Hospital Life

I was asked to write an article recently titled “Understanding me”. It was a positive request borne out of the curiosity of particular groups of health care staff who cared for our son Otito. I have published it because we hope that it can give others who care for families and their children with complex health needs insights into how confusing it can be for those families. Families place a great deal of trust in health care professionals (HCPs). Sometimes, for legal reasons, HCPs take step back from families who need their crucial input when making crucial decisions about the care of their loved ones. This is the era of human rights and they don’t want to be seen as pushy. If you read the article further, you will see our case study as a family and how it would have made a huge difference to us if our HCPs steered us in the right direction rather than handing the reigns over to us. We had absolutely no clue what we were doing. Why were they asking us to decide? After all, they were the professionals.   I later got to learn that parents are the best professionals with regards to the care of their loved ones. When this statement is made, what is taken for granted is that professionalism comes from experience. Yes today, I can say, I am… or rather we as a family were experts with regards to all things pertaining to Otito. However, at the start we were absolutely clueless. It was very scary for us as a family to find ourselves being left to make decisions about if Otito needed to have various key procedures or not… you know, that thing called consent. I hope you find this article useful. Well. without any further ado, lets begin the article ….   UNDERSTANDING ME   When our son Otito was born, little did we know about what lay ahead. He had been diagnosed with a metabolic condition called propionic acidaemia and it made his body unable to break down his proteins properly. It made him very sick because his body built up dangerous toxins called ammonia instead. As a mother, I felt extremely overwhelmed by the whole situation.   What went well? After he was born, he needed to have a dialysis to clean his blood and reduce the Ammonia levels. He was only 3 days old. I think that the medical staff realised that we were extremely anxious. Most of the staff were very patient with us and answered most of our questions. One particular nurse asked us to take photos to show him when he was older. I thought that was a positive statement because seeing him with all the tubes and machines made me constantly feel that he was going to die. I could not imagine how someone so little would survive all the poking and prodding from all the staff. It was not what I had envisioned his first few days of life to be. I kept being told by staff that it was for the best.   I said very little at the time but I was very impressed at how members of staff were sensitive to my unexpressed feelings. They explained every process to me. Most of the staff went beyond looking after my son and extended some of the care and attention to me. This made me feel very happy and valued. I had delivered him through a caesarean section. One morning, a nurse on duty asked me how I was feeling. Upon realising that I did not have a natural birth, my hospital hotel room was changed to one with a lift access to ease the stress of using the stairs. I felt very well supported and more able to contemplate a life with a sick child.   What did not go well? Subsequent months made us realise the extent of our son’s ill health. I thought that the staff did not do enough as the months progressed to prepare us for what to expect. Otito struggled to keep up with his calories on a daily basis. He needed to consume a fixed minimum amount of calories daily to provide his body with enough energy. The problem with the inability of his body to use proteins was not limited to his diet. When his body attempted to use his own body’s proteins, it also encountered the same problem. His body also built up toxins instead of converting the proteins into energy. Not keeping up with this daily minimum calories made him very unwell.   His consultant suggested that he needed a gastrostomy to help him maintain the minimum calorie requirement. I had never heard of a gastrostomy before. As a result, I could not contemplate a life for my son with a hole in his stomach. All I could see every time I was told about this device was the big hole that will be on his stomach and so I declined.   What was important to me? As a parent, information was very important to me. I found it very hard to build trust with health care professionals easily because I had been let down a few times within the first few months as a carer to my son. I was very protective. I just kept being told about what my son needed and at the same time, I was told that the decision was up to me. It was an intimidating position to be in. Here I was as a novice mum to a sick child (with a condition I could not pronounce) being made responsible for something as important as his nutrition.   I was very scared of getting it wrong. I saw the idea of accepting the gastrostomy as synonymous with accepting defeat. I did not want to give up on my son’s ability to feed. I was properly informed about the fact that it was his medical condition worsening his appetite. The more I tried […]

Understanding me … not just me but our needs as a family with a sick child.

Hello everyone. I gave a talk about blood transfusion in February 2017. It was a parents’ perspective on the whole process. It was an honour to be invited to present my views in a gathering of intellectuals. This is one of the talks closest to my heart. You see, coincidentally, after the talk on Thursday the 2nd of February 2017 at the Birmingham Metropole, Otito haemorrhaged and subsequently crashed on Sunday the 5th of February 2017. It was really weird for us as a family. He bled out because his pancreas failed. I have never seen so much blood being given to one little person in my entire life sincerely. It was surreal. There I was talking to this group of people about why blood transfusion was amazing, life saving and all without realising what was lurking in the corner.  He must have received nearly 20 bags of different types of blood products (without exaggerating) over the course of the 2 weeks that he spent in the intensive care. The fact that he still passed away in the end made it difficult for me to talk about the experience. Well, today, more than one year later, I feel really able to share with you my story about why blood transfusion is wonderful. I know there are very many varied opinions about if this should be done – especially from religious, traditional and cultural points of view. I acknowledge them but I must put forward my case in support of blood transfusion. Had it not existed, not only would I have missed out on sharing the life of my little warrior for as long as we did in the end but I would have lost him on that very Sunday that he haemorrhaged. I know it sounds silly and he never woke up anyway but you see, having the option of transfusing blood bought the doctors more time to try to save my son. It also gave me the opportunity to gradually come to terms with the possibility of a life without him. If I had not had those 2 weeks to read him his favourite stories, sing him his favourite songs, play his favourite music compilation to him, I would never have been able to accept his depature. Thanks to all the hardworking people who work tirelessly to make this process happen. Thanks to those who establish systems that make the process safe. You are all heroes and as a parent, I am extremely grateful. So please I hope that you enjoy the piece. At the end, I also added a link to the feedback and comments from the day. Enjoy! BLOOD TRANSFUSION TALK Paediatric and Neonatal Transfusion programme My near initiation as it were into being a blood transfusion recipient was actually a few years ago after a caesarean section. I remember being told that my blood count was very low and being prepared about the likelihood of getting one. My first feeling was that of horror. You see, I grew up in sub-Saharan Africa where anything blood related is viewed rather superstitiously. Blood represented life. Important traditional contracts or covenants are sealed in blood. Blood could not be mixed without care. During marriages blood lines were traced even up to four generations to prevent incest. Royalty, warriors and servants were identified through blood lines. Discussions around blood were not done lightly. Although a lot of civilisation has watered down many deep rooted traditional beliefs, myths and superstition, we still retain many fragments of the old African traditions and cultures. I felt that the blood discussion was best avoided. The thought of having my blood mixed with that of a total stranger was disturbing. Despite my education and knowledge, I had always been unable to see the need for it. I also had bad memories of seeing blood transfusions go badly and this fuelled my anxiety too. It was quite customary locally to blame subsequent infections or health complications arising post-transfusion on the “blood transfusion”. The mostly inadequate and weak health system could not provide any alternative answers and so locals demonised the whole blood transfusion process further fuelling the general aversion for blood transfusion. As there was absolutely no confidence in most of the systems responsible for blood transfusion, relatives became the culprits and producers of blood in areas where blood banks were empty. Sadly, this led to the discovery of blood related diseases in such kind volunteers further leading to a sense of grief and misconception about blood transfusion. The local adage “what you don’t know won’t kill you” fuelled this rumour. You can now imagine my horror at the mention of a blood transfusion. My thoughts were fixated on the lack of existence of any available relatives to provide blood for me. I would still not have wanted a stranger’s blood in my veins. Luckily, I escaped without needing a blood transfusion on that occasion because my blood count improved with medication. Well a few days later, the son for which I had the caesarean section (Otito) was diagnosed with an inherited metabolic condition called Propionic Acidaemia which compromises his body’s ability to breakdown proteins. As I was dealing with that news, I got a call from the “heel prick” people to say that my son also had the sickle cell gene. Well, without boring you with the details, somewhere along the line, there was talk about blood transfusion again only this time no amount of prayer, positivity or optimism could will it away. After a few months of life and having had several hospitalisations, he had to have a central venous line – a portacath. It improved his quality of life drastically however, the consequence of that was that his blood had to be discarded each time a blood sample was taken. He also became more prone to line infections leading to even more sampling. Together with his sickle cell trait, he became a frequent candidate for blood transfusion. In the last year he suffered […]

NHS Blood Transfusion Talk : A Parent’s perspective on Blood Transfusion

It was an absolute honour for me to be asked to share my views about parent caring during this Carers Rights Day 2016. The Local carers team did an amazing job setting this up and putting it all together. Many thanks to the Citizen newspaper for publishing the article. I hope that by creating more awareness, many parent carers will find the courage they need to confront all the uncertainties that lie ahead of them with their children more easily. The UK government tries to provide support through various agencies like the Carers UK,  Social services, Community paediatric teams, Community nurses, and doctors within or outside the hospital setting. In some areas hospice care is made available to families with severely disabled children to help provide some well deserved respite from care while ensuring that their children are still cared for in a safe enviroment. If carers do not come forward to access and the explore various support outlets, they just remain there unused. This defeats the purpose for which they were set up. This is why it is essential for Parent carers to access every possible help and support available. There is really no need no need to carry the burden of caring for a child alone. There is no need to habour fears about consequences of accessing well deserved support. Most of the fears will be reduced once parent carers begin to ask the right questions about what is available to ease the burden of care life throws at them with the existence of the illness of their child. There is a saying that a problem shared is halved. True, but I always like to think that this only holds if you share it with the right person. Getting support, asking questions and letting others help will be synonymous with sharing your problem with the right person. It is  truly the right of every carer to access this support. You are not being too demanding you are just being wise and proactive. That on its own deserves applause! I decided to share the article here To show my support for awareness being created on this Carers Rights day. Thank you as always for your support and readership. I know you do not realise it but every time you click, read and share my work you not only spread the word about what you have read but you support me on my own journey. It is strengthening that you find my work useful. Thank you. So sit back, relax and enjoy the interview…. Carers Rights Day takes place on the 25th of November, a national campaign which brings unpaid carers, support charities and local communities together to help carers understand their rights and the support they are entitled to. Carers MK supports over 4500 unpaid carers in Milton Keynes providing essential advice and information to those providing unpaid care to a relative or friend who due to illness, disability or frailty cannot manage without support. Case Study:  Parent Carer, Mrs Hope Carers UK support those providing care and support to a child who is ill, has a physical or learning disability or additional needs. Parent carers face huge uncertainties, stresses and challenges when faced with coping with their child’s condition, and it is important that they receive emotional support, advice and information to help them in their particular caring situation. Parent Carer Mrs Hope has a four year old son who has an inherited metabolic condition called Propionic Acidaemia. His body cannot break down proteins but builds toxins in his blood. He was diagnosed when he was just 3 days old after he went into Coma due to an overload of toxin called Ammonia. and in February 2016 was admitted to Great Ormond Street hospital with chronic pancreatitis. He cannot be fed by mouth but with specialist intravenous feeds called TPN into a big vein in his heart. Mrs Hope is now juggling visits to Great Ormond Street while also looking after her 5yr old son Mark. She and her husband take turns in shuttling between their local hospital  and London to care for the boys. It is extremely strenuous on the whole family, emotionally, physically and psychologically.   Q  &  A   What are the biggest challenges you face as a parent carer? My biggest challenge has been accepting that my 4yr old son will not be perfect in every way a child should be. It was very devastating when he was diagnosed. Initially I felt overwhelmed with guilt because I learnt that the condition was an inherited one. Simply meaning that it came to be as a result of mine and my husband’s matching but defective genes. The realisation that his condition was incurable and degenerative fuelled my sadness for him. It was also hard to make his 5yr old brother understand that his younger brother was different. My 4 year old also suffers from severe autism (as a result of the Propionic Acidaemia). This meant that the 5 yr old brother initially struggled, believing the 4yr old deliberately chose not want to play with him. Our acceptance of the whole condition early meant we were able to reach out for help and support for our family.       How do you manage caring for your son in hospital while looking after other members of your family? I have managed considerably well since I began letting everyone in where safely possible. With a son as delicate as my 4 yr old, I initially felt I needed to do everything for him myself to get things done properly. Unfortunately, I struggled that way. I learnt to share the responsibility for him with the nurses at my local hospital or GOSH London (depending on where he was admitted). This freed up time for me to go home at least once a week to be a mum to my other son- to do the school run, take him to the park or just cuddle him. I have fed off this bit of normalcy. […]

Interview with the Local media

Do you know what I did for a few weeks during my son’s hospitalisation? I went home! Having been hospitalised for 5 months at the time without any hope of  discharge, I had to swallow the bitter pill of detachment. I began the transition a few weeks earlier by letting the nurses assist with some of the tasks that I alone performed for him. He did not take to them at first but he soon relaxed when he realised that I was not budging. It proved that bath time could still be fun even when anchored by someone else. I knew deep down that I needed a break. I had to spend some time with the rest of my family too. While at home, I kept wondering how my child was in the hospital. I must have called a million times on my first day away from him and each time, I got told that he was fine. At times when it was impossible to get through to the hospital,  I felt emotionally and psychologically helpless. While at home, I was floating about, not able to actually enjoy my supposed break or even relax.This was my story for the past few days. What kept me going was family. The warmth of being around them. I went on to spend time with them and even allowed myself enjoy that time out. I was happy. We had laughter and of course the odd disagreements. It was fun fun fun! At the end of my break, the time came for me to return back to my duty post beside my sick child in the hospital and did I crumble inside? Of course I did. Don’t get the wrong idea, I love being with my child here in the hospital during his long admissions. On this occasion however,  I think I got too cosy at home and remembered the comfort of lying in my bed and just being at home. It hurt! You see, when you have a sick child and find yourself hospitalised for a long time, initially you struggle to adapt to being restricted to the hospital. However soon enough you adjust and become completely used to the routine. You become hospitaley. It works well for you when you are the parent in the hospital. You adapt to the monotony and sluggishness of time. You start making new connections with staff (to guarantee the consistency of care your child receives) and other parents (to maintain your sanity and give you a break from your thoughts, endless games of candy crush or just boredom!). Going back and forth from home to hospital can sometimes be inevitable especially when you have other children to look after. However it doesn’t make it easier for you as the carer – just wrecks havoc to your otherwise perfect adaptation strategy.  Silly right? It is quite normal to nurse many hospital frustrations and crave home. You may even find that you keep these feelings secret because they sometimes leave you upset with yourself for being selfish. The good news is that you are not alone in experiencing these feelings. Now listen to this there’s more! When you get discharged home with your child, you may find that you walk right into another set of emotions. Every time your child as much as coughs especially in the first few days post discharge, you may see that you begin to feel very terrified by the thought that your child will end up back in hospital. This feeling may petrify you (if you are already cosying up to being at home), or annoy you (if you begin to wonder why your child cannot just be stable? Surely that’s not too much to ask!). As you begin to adapt to home life, the stress starts again to build up with endless things to do and no time to rest! The key to surviving all these emotions that we beset us as parent carers is to stay calm and accept that the ill health of our children are way beyond our control. There is no need letting it make us too sad because it will not really change anything. Some parents have expressed feelings of resentment towards the sickness plaguing their children and this too is quite normal as long as we do not dwell on those thoughts for too long. So you think it, you discard it so that you can move on to the next thing which is survival. All these feelings do not make us as carers wicked or bad. They make us human, tired and most times, exhausted. What we all need from time to time is rest . We get offered help as carers from family, friends, community health teams, social workers and so on. What we have to learn to do is to take as much help as is being offered to us by way of support. Sometimes, we turn down help because help can be feel intrusive even though this is hardly the intention when it is offered. Accepting help can make us worry about our homes being turned into hospitals with healthcare practitioners streaming in and out. I worry about that too. However ,in my experience, it is best not to turn down well meaning help so that when things get too stressful for us, we can always be guaranteed of some respite. This is because, such help although annoying may be the only opportunity for us to relax sometimes as carers. I will tell you some of the reasons why you cannot really go wrong accepting help and support It helps your child learn to allow others help: Reaching out for help and accepting help when it is offered are the elements that can help you survive your journey as a parent carer. The saying that no man is an island becomes even more apparent when you care for a sick child. When you nurse your child, you know how delicate they can be emotionally. Many carers know how difficult it is for sick children to adjust to […]

Hospital life : Why you need help and support.

It had been a crazy couple of weeks for me. I had thought that through it all, I would have found time for myself ! Well sadly, I did  not. I had very tight schedules with many crazy deadlines to meet. I also had early mornings, late nights and everything in between. What I needed was some me-time but that was impossible to get. I used to be able to steal this me-time within the chaotic days but not these past few weeks. I could neither consistently put down as much as a scribble on paper nor could I even go for a walk. It was absolutely chaotic and left me feeling very messed me up! I always feel that we have it in us as humans find deeper sense in our lives by engaging our hands and feet. I know that it sounds silly but somehow by engaging these two parts of our anatomy to varying degrees and at different times, we secure some time within the nearly impossible schedules we have as parent carers to be by ourselves and therein lies the hope of some sanity for us. The more we are able to steal this me time, the more possible it will be for us to create more order and gain more control over the rest of our day and hopefully our lives. With our hands, we write, colour, sew, do the washing and so on. With our feet, we simply walk (notice that I did not say run because that may be stretching it too far for already exhausted carers like us!). Those of us  who can perform these two activities nee to pause now because there lies one thing to feel very thankful and fortunate for. Do you know why I begged you to pause? Well, It’s because if you are a parent carer like me, you will know that within our chaotic lives, it can be nearly impossible to ever find something to feel fortunate about. It is during these seemingly mundane activities that I find for example that it is possible for me to steal some of this me-time.  That alone time can be 5 mins or less. It just allows you organise your thoughts, make plans  or simply stay quiet. This me time does not necessarily mean that you have to be physically alone to enjoy it, you can still grab it even during activities by shutting everything out and relaxing your self even for as few as a few minutes at a time. Such peace and serenity can be all you need in several bursts throughout your day to restore some calmness and orderliness to different parts of your upsey, downsey or what I like to see as the yo-yo emotions that sits within most of us carers. So for example, a typical day in a carer’s life may start with needing to do administer medicines and give the child a wash. As a carer, you can practice some relaxation by taking deep breathes as you perform these simple activities. Time is one thing that is precious and never in abundance especially where carers’ needs are concerned. It is the most sought after companion that is never accommodating to us. So one helpful way to create time for us amidst our busy lives is learning to make that time within the activities we perform. Learning to take deep breathes even as we perform all our activities can drastically improve our well being. Here are some tips that I practice and find useful: Multi-tasking is good but the downside is that it can leave you stressed. Break down all the tasks for the day into segments before working through them. Reduce your self exertion by performing and completing the task(s) only a few at a time. Remember to breathe and focus your thoughts on each task(s) you perform. This makes you perform them better with more focus and stops your mind from being overwhelmed by everything outside the task at hand. You can sit still in time clusters. So throughout the day, you can sit for 3 mins in every 1-2 hrs just catching your breathe. When you start to get worried and stressed, writing your thoughts in a book can help declutter your mind. In the end, what you may find is a more relaxed you amidst your day. There are many other ways that parents find to cope through the stress of caring for their children. As long as the method is safe and the end result is some level of calmness and stress relief to that parent, then fire away! Every parent will find their own way in the end. No one has any formula but hopefully hearing about different strategies adopted by different parents will help you formulate your perfect method. Thank you for reading. If you enjoyed reading this, you may also enjoy some other topics we have discussed in this series. Photo credit: Pixabay    

Hospital Life – The Parent caring “Yo-Yo” effect

Have you ever wondered what it must be like for a parent to be told that their child has an illness from which they cannot recover? That the child may live but have a very low quality of life? That the prognosis is so dire that their life span cannot even be guaranteed? I never had to ever have these thoughts before I had my sick child. It was a random portion of misfortune that had been apportioned to me by nature. Suddenly the lottery of birth had dealt me this very devastating blow. There are many like me who now have to live with the problems associated with this type of news about their children. There are so many aspects to becoming a parent of a sick child that I daresay, not even a single book on the subject will cover.  In fact looking back now, the things I thought were problems were actually not problems and its funny also how my definition of worry has changed with time. On a daily basis many parents in my new world have to deal with these sorts of information. I pray that you never have to because when hit with these possibilities and probabilities, your life changes forever. Some of us have been living on the edge not really knowing from one day to the next what the future holds for our children. What their quality of life will be and how they would cope with their disabilities long term. Some of us even add the worries about our own life expectancies to it. Oh! What if I die? What will become of my child? Who will look after him/her? STOP!!! I will stop you there please. The brain is not made to cope with information overload. So how then can it deal with question over load? That line of questioning only leads to despair.  There are too many unknowns to deal with. Even in mathematics, equations are used to get values or answers for unknown variables. As the unknowns increase, we need more equations to help substitute and solve them. Also, as unknowns increase we just generally stop and give up on any hope of a solution. Life is filled with unknowns. Sometimes we just need to breathe because there is also something beautiful that life is also filled with…Hope! I will give you an example. Who knew some 20-30 years ago that there will be such medical advancements and prowess as there are today? In the past a diagnosis of diabetes or HIV would have been a life sentence. However, fast forward 20-30years later, today, that is no longer the case. There are better outcomes, management plans and treatment options for those patients. In the past, amputees did not get the care and support that are now readily available to many of them. So many have now gone on to become olympians and actively enjoy their lives to the fullest. So there is still hope. Some rare conditions are being researched into daily leaving tomorrow pregnant with hope for better outcomes. The effects of particular illnesses can also vary from patient to patient. This means that there are very different outcomes for different patients even with the same illness. Even amongst the healthy still lie life’s uncertainties. Who said that healthy people do not die in different ways? We will all get to answer the clarion call somehow.  That is also part of the unpredictability of life which we have no control over. What we can control however, is how we choose to live our lives. We can choose to be happy by spending as much quality time as we can with our children- healthy or sick. We can make every living moment count. Worrying too much about death and the impending end of our sick children can rob us of all ability to enjoy life with them. These different situations we find ourselves in, make us stronger people, better people. Only if we allow ourselves power through our challenges. There is so much strength deposited in everyone. They only become available to us on a need-to-use basis. Many parent carers are gurus at multitasking and joggling. Most of them are very resilient. The sad thing is that because they are so busy getting on with their challenges that they never notice how strong they are. The act of caring for your sick child means that you learn to be a more patient person. Can you count how many hours you have sat staring into space waiting for a blood test, or a result, or an operation or just waiting for your child to get better. Did you ever imagine that you had it in you to sit still? Sometimes you find yourself praying for days and weeks for your child to feel better. You find that you possess some form of faith or strong will (which you never realised that you possessed) to help you stay focussed through a stormy bout of deterioration. Did you ever know that you could be as prudent as you have become with your finances? You suddenly find  that you are able to find ways to make your finances stretch through your demanding circumstance. So although problems differ, they all have stress, frustration and uncertainty in common. We can however, control how we allow those problems affect us by adopting a different approach to them. So look inside of you and draw from the strength that lies within. Do not focus on the problem at hand but on the hope that it will get better. Keep taking baby steps in the night directions. Stop over thinking about the future, it is so unpredictable that it seems a waste to allow it weigh us down. Take it one day at a time. One hour at a time and one moment at a time. Deal with each step that lies before you. After then ask yourself what the next step is. Deal with that and then […]

Hospital life – One step at a time.

Being a parent carer is really not all doom and gloom. It’s hard to be yourself because most times you put yourself last on the scale. However, as carers, we need to take care of ourselves. Our health, our backs and even our emotions. Constantly ignoring that symptom you have because of the attention your child or loved one needs will do no good in the long run. It’s a good idea to always bear in mind that as soon as you become unwell (especially after ignoring niggling symptoms) everything breaks down. You begin to worry about who will stand in for you when you are ill. We all know that worry. It is made ten times worse if you are anything like me. I get caught up in the thought that no one can look after my child as well as I would. This may be true but when you are unwell, it is what it is- you will have to let others step in whether you like it or not. They may not necessarily do as good a job as you can be but they will definitely give it their best shot. Adopt proper posture when performing daily tasks : For some of us, our caring role means we are either constantly lifting or  bending. It is a good idea to adopt proper lifting and bending techniques on time. You really do not want any wrong postures that will leave you in pain over time. It’s quite easy to take bad postures for granted but bear in mind that caring for your loved one may be long term. Make sure your vaccinations are up to date : In the colder months the flu vaccination is a good idea especially if you normally have one. Do not forget to check with your doctor before having the flu jab in order to ensure that it will be right for you. If your child or loved one is very prone to the flu, they may be offered the flu vaccination anyway. The vaccination you get will just stop you having the flu and reduce the risk of exposing your child or loved one. Get some fresh air : Emotionally, carers are at risk of becoming lonely and depressed. It will be a good idea to try to get some exercise as often as possible. The fresh air never does anyone any harm. For those who are unable to enjoy the outdoors for various reasons, even sitting out in the garden or by the window may make a difference. Just watching as much nature as you can through the window, strolling in the meadow etc can uplift a carer’s mood. Stay connected with help and support : In addition, there are support groups for carers in England. The carers UK, or a local branch of carers can provide listening  support and sometimes advice on days when you struggle. For those abroad, similar support may be available. Where unavailable, all hope is not lost, friends and family are always invaluable. Providing support to those who struggle. It always helps when we can talk about our feelings. Remember, that’s child or loved one will want you to look after yourself better if they knew how much you were struggling. It will ultimately impact them adversely in the end. It is a good idea to seek help when you struggle. It does not make you weak, it only means you are strong and working hard at keeping strong. There are lots of things to support parents in the community. Parents who have kids with disability especially can have access to some benefits for them and their kids. When my child was diagnosed, it took me a long time to come to terms with the full implications of the illness for him and for us all as a family. The last thing on my mind was seeking any help. There were too many things to get used to. However, a lot of the stress would have been halved if we sought had sought help sooner. In the UK, it is worth speaking with the citizens advice bureau on time to advise on what is help would be suitable. This is because different families have different needs. However, I found that the government website also provides information. Disability living allowance is made available to children with disabilities. The level of care required for the child is used to determine how much would be awarded. There are two categories: mobility and care elements. Some children can be awarded both or either of the elements in the disability allowance. At times children can still be awarded even without clear diagnosis. The main criteria used are the level of care or mobility needs for the child in relation to children his or her age. The main carer for the child can be the parents, foster parents or any other person. If that person spends over 35 hours a week caring for the child, he or she can also claim a carers allowance. There are rules to be adhered to while claiming the carer’s allowance. It is taxable benefit meaning that it counts towards your personal allowance in every tax year. There are limits to additional earnings per week and it is worth checking before embarking on any extra employment. There is also a restriction on the number of hours the carer can be in education. Part-time education not exceeding certain hours a week are allowed. Some families may struggle with caring for their child and it may genuinely impact on the families ability to work and earn enough money to meet their living costs. Families can apply for income support and child or working tax credits. There are different criteria used to award these and it is worth calling them for advice early enough. When the income is low or the  family claims income support, it is also worth checking if you are eligible for housing benefits.The Turn2us website contains  an online calculator that parents can use […]

Hospital life – Taking care of yourself as a parent carer (Physically and Financially)

Children start to get frustrated , the longer their healths deteriorate. They act out these frustrations in so many different ways. Unfortunately their nearest and dearest are left on the receiving end of these feelings. Its hard to empathise with a person living with ill health. No matter how much love, attention and affection you have to dish out, it does not stop the child having the monopoly as regards the ugly effects of the sickness. I remember when I was pregnant and completely sick. I remember thinking that it was the worst feeling ever. Constant tiredness, sickness, vomiting, constipation, nausea and my mouth tasting like tar became my daily ordeal. Not that I had ever tasted tar but I imagined it tasted like it, smelt and looked like it! I had my loved ones waiting on me hand and foot as I lay immobile on the “bed rest” prescribed by the doctor. No matter how much they cared, I still felt sick. Too horrible to even speak. In fact sometimes I felt like screaming for them to leave me alone. I had the common sense not to because I could not even walk to the bathroom without help. I envied their wellness. I wanted to eat but I couldn’t. I wanted to sleep but the baby turned on my belly into a champions league field. But I understood what my sickness was. I understood the time range. I even understood that I was pregnant afterall  I was an adult with common sense. Sadly, even that did not diminish my frustration. So, although pregnancy is nothing compared to the ill health that children experience, imagine how it must be for a child. Children are supposed to be free, to play, scream, run around and just be children. Illness does all the things to the child that limits their ability to be children in the way they are meant to be. Sometimes they become restricted, stay for long periods in hospital, it keeps them in pain or constantly nauseated and feeling sick. It  limits their breathing, speech and the list is endless. For some kids, they have one or a few symptoms, for others, they have a combination of symptoms varying in duration and severity. Imagine how frustrating and annoying it must feel that your body just lets you down constantly. Imagine how frustrated they must feel when without any intention we imply that they should get on with it and be used to these feeling? No one can get used to being sick not even a child. For children with siblings, they are left confused about why they are the ones with the illness. They wonder why their symptoms do not reduce or why they cannot be cured, saved or rescued from whatever condition it is that they have. All these feelings may not be easily expressed by the child. Here are some common reasons : Sometimes children do not even realise why they feel frustrated leading to anger, resentment, hostility. Some children feel demoralised as a result of their constantly ill health and experience a total loss of interest or zest for life. Some children get too worried about worrying their parents and tend to bottle up their feelings leading to even more frustrations.. You see, your child loves you and as their health deteriorates do not only see your efforts, they feel your pain for their situation. They worry about you unknown to you and this worry can become a barrier becoming a stumbling block leading to an inability to let you in regarding their feelings. Some children’s feelings get messed up by the effects of several medications in their blood stream. This may impair or aggravate their feelings. Some children begin to get muddled up emotionally as their healths deteriorate because of the neurological effects of some health conditions in children. Sometimes, unknown to us, kids see our fragility especially at times we think we try the most to hide our feelings from them. I always feel sometimes that they know more than they are letting on but with good reason. Unfortunately and unknown to the child, one thing that always erupt to the surface are unresolved feelings of pain, frustration, anger and so on. When these feelings erupt, parents, carers, or even Health care professionals (HCPs) can become the targets. For children well enough to still attend school we may stretch the list to include their classmates and teachers. While we cannot really blame them for lashing out, we cannot also accommodate inappropriate behaviour especially when these outbursts becomes regular and unsafe. It becomes our duty to help them as best as we can. It is a difficult but not an impossible task. Here are some tips Listen – Providing a listening ear to a sick child can be the one thing that will stop things deteriorating. By listening, you are able to detect the reason(s) for their sadness and frustrations. Knowing these may help you address them. Listening provides an opportunity for a you to reassure your child, calm their fears and refocus their thoughts. It is true that their illness may be incurable, life-threatening, life limiting thereby making them very delicate amongst other things. However, by listening you can give them the opportunity to half their problems. As a problem shared is halved. Expressing themselves can relieve the burden of bottling things up. This outcome although halfway to the intended outcome of resolving their feelings is better than no outcome at all. Do not take things personal – Do not blame yourself for the attitude of your child. Try not to think in the first instance that the child is deliberately attacking you as a parent. Most of the things children say to their parents when they are unwell do not necessarily reflect on your parenting skills. Remember that  as much as you love your child, the illness is theirs. This in itself fuels the frustration which they may channel unfairly at you. Realising this fact can […]

Hospital Life – How listening to a sick child can help

How do you stay strong and positive when there is really nothing to be happy about? This is one of the main questions parents contemplate every day when dealing with illness of their children. Thousands of children in this country are chronically ill. Some need tonnes of hospital care in addition to needing around-the-clock care when they are at home. Their healths are not only as fragile but also unstable. Their parents and carers are the rock solid people that cope with these emotional troughs and peaks around the clock. But are those calm and calculated exteriors really for real? Could there be butter jelly real-life people standing behind those calm and strong exteriors that many parent carers appear to possess? The answer is an emphatic yes! When the whistle of life blew everybody planned to grow up, get an education or learn a skill, become successful, get married or into a relationship and have kids…. healthy kids. I will be very worried about anyone who before encountering their child’s illness meticulously spent time planning and expecting it. It is no wonder then, that many people who find themselves in this situation are not only clueless and confused about what to do but are also overwhelmed by it. One of the safest mindsets that many of the parents I have come across have is pessimism. Pessimism and not been positive is like a safety net for their emotions. In fact until very recently I shared the same opinion. Think about it this way – if you are not expecting anything good, or not expecting good news about an issue how can you be disappointed? Disappointment is a feeling I think one experiences when people or situations fall below our expectation. If there is no expectation, then there is no disappointment right? Well, that’s how pessimists and “not positive” people think. You will notice that I do not call them “negative people” because my interactions have shown that there is a big aversion for the “negative tag”. It’s like an extreme description that is perceived as a defeatist description of how the mindset that these “not positive” people have. See, whatever we call it, firstly, I will like to bring up the ideology of the “glass”. I am sure you are all familiar with this analogy. Imagine a glass on a table, its capacity was say 100mls but 50mls of water was put inside. This means the glass held half its content capacity. When we all view this glass, we can choose to see it either as half full or as half empty. But I want to ask you one question, does this change the volume of water in the glass? – No. So my point is that, like we all know, the glass is either half full or half empty but one way of viewing this glass can give hope, peace, calmness to the viewer. Remember the contents remain the same. So sincerely it is true that not expecting anything means you do not get disappointed. But the risk in that is that “not ever expecting” or “not being positive” can leave you feeling as low as your expectation. That lowness can leave you sad and constantly existing in a state of sadness can have health implications for you. In the end, the problem may or may not go away but what we lose is “you”. We lose your true self, your true happiness, your true zest for life, you become hurdled into an emotional corner trying to save your heart from heartbreak that may occur as a result of your child’s failing health. Mind you, children feed off the energy we exude. No matter how we put on a front, our true feelings are hard to mask from people we spend hours with. Our frustrations, irritations and sadness filter through our remarks, comments, temperaments, and mood swings. We do ourselves an injustice because we also unknowingly lose out on quality, valuable and irreplaceable time that we can share with our children – Sick and healthy. It is true that by being “not positive” we can shield ourselves from disappointment (remember the no expectation no disappointment argument). What we also may end up doing unknowingly is erecting a wall around ourselves. Only a few people can handle being “not positive” and staying in control of their emotions especially in other aspects their lives.  What really tends to happen when we are “not positive” is that we start to slip away and stop living because we tend to mainly experience worry (even though you don’t realise it). I remember as a child we got told this story- full credit to the unknown author: A man was sent to a village from a shoe factory to see if there was possibility of expansion for the business. He got there and it was a very backward village with people wearing leaves, on barefoot. In fact it looked like Stone Age. He walked all around and the story was the same so he went back reporting that it was a total waste of money going there stating that the people had never even heard of shoes. After a while, the company sent another man to see if any development had come to the village. He did but the story was still the same. So he went back and told the company that there was a massive opportunity there. They asked him if the people had become civilised now, he replied to the contrary. They wanted to know why he had such an idea. He told them that their lack of civilisation was his opportunity. The people had never heard of shoes and it was his opportunity to market it to them. In the end he made massive profits selling more than anyone in the firm. So, why this story? You see the two people like in our glass analogy, saw the view of the same situation differently. It did not change the fact that the village was still in Stone […]

Hospital life – Staying strong and positive

Tribute to CATS   I have this teddy bear cat in my house. It is orange with brown whiskers. It sits proudly on my son’s bed. It is an emblem to us as a family. It represents hope, peace and a united fighting spirit. We call it CATS seems cheeky right? Well you will know why we chose that name in a moment. Looking around my home, you will find many of those CATS around, perhaps ten of them. CATS actually stands for Children Acute Transport Service. It is an acronym. When my son was born, he was very unwell. As soon as I had him in my arms, I knew he was not right. I could have brushed it off as paranoia but because I had been through extreme experiences after birthing each of my boys, the consultant knew not to brush off my concerns and thankfully so. In no time, he was in a coma. He was slipping away. That was when I heard the name CATS for the first time. CATS was the intensive care ambulance we were waiting for to transport us to Great Ormond Street Hospital where hope lived. CATS was the name of the service I apprehensively asked the nurses about when I wanted to know their proximity since the last time we heard that they were on their way… amidst their pleas for me to calm down. How could I? It was hard to be calm when my son’s life hung on a balance it was hard to think straight or make sense of anything. Then suddenly, CATS arrived! When CATS arrived, it felt like an army of knights had arrived. Looking at them, they looked built for the occasion. There was a doctor and a nurse on board. They took what seemed like ages to transfer all the equipment from the hospital into the ambulance. I am sure it happened very quickly but that day, it felt like years. We were on our way to the intensive care unit in London to save my boy’s life. Neeeee…… nooooor………neeeee…..noooooor The sirens blared. I cried with each beep because I had no idea if he was going to make it. Neeeee…… nooooor………neeeee…..noooooor I was scared but reassured by the expertise before me from where I sat on that ambulance. They were pricking and prodding my boy. Putting cuffs here and thermometers there. They simply knew their onions. Although my heart was heavy, it was hopeful. The CATS team were super professional. Reassuring me of our arrival in no time. They tried to keep me distracted by talking to me. I felt cared for…. Not shoved away because I was not the patient. There was a seat for us his parents on the ambulance. After we arrived and our child was transferred into the intensive care, CATS bade me farewell and gave me a parting gift – the CATS cuddly cat. Since then, we have made over 10 of such trips. We unfortunately have had a lot of intensive care admissions but there has not been a time where I have doubted the capability of the CATS team to deliver my son to where help lay. I know many parents appreciate them and we are all thankful for the excellent service that we enjoy via CATS for our kids. My son recently needed CATS again but we got given a bag for life bag with mini brushes and toothpastes for freshening up on the go. This year I understand CATS is 15 years old. 15 years of delivering hope to our little fragile ones. I am thankful to them for a great service. My son will not be here if CATS did not do their job as well as we all know and love them for. So once again, as I look at this cuddly soft toy – CAT I remain happy and hopeful that come what may, help will always be on the way. Thanks for reading. If you enjoyed reading this, you may also enjoy some other topics we have discussed in this series. Photo credit: Pixabay      

Hospital life – Tribute to CATS

The army of parents helpers. Yes, I like to think of all the friends I have made along my way on this journey of parent caring as an army. A legion, in fact a confraternity! There is something very comforting about meeting and knowing parents on the hospital ward where your child is being cared for. It feels like we all share in that unity of purpose. We all find ourselves trying to be the best parents we can be to the children who are all severely unwell. There is a comfort in sharing our journeys together. I like to group the parents into three categories: the short stayers the long stayers and the returnees Yes, it is pretty self-explanatory. This short stayers come to the ward and stay for a short while. Some are out within a matter of days. The longest ones here stay a couple of weeks. The long stayers are the hospital Methuselahs like myself. They stay for months and sometimes years. While the returnees have been on the ward for  either long or short stays in the past and find themselves back again staying for a long or short time. It doesn’t really matter. I have struck many a friendship on the ward. They are very sincere and true friendships. Unlike other friendships – normal ones that happen in your normal lives outside the hospital, these hospital friendships have no baggage. It is just simply struck over a chat, a cuppa or on a corridor while watching the kids play. There are no complications where these friendships are concerned. These friendships do not depend on class, money, status or things like that. Life humbles us like a pack of sardines and we find ourselves brought together by fate. Our paths cross as a result of something otherwise negative – sickness. These beautiful friendships blossom and grow amidst  our struggles. We seldom plan to strike them but the positiveness and strengths we draw from them keep them alive. We share and unburden our pains with one another without any fear of being judged. There is a comfort in knowing  that when you say the weirdest thing about how you feel, the listener not only understands but chances are that they have felt that same way before. We share thoughts we cannot even disclose to our otherwise nearest and dearest. We moan without worrying too much about boring the other party. It is an interesting type of moan where we all take turns. We listen because we learn from one another. We don’t switch off midway like our regular friends who we feel tend to moan about things we do not consider to be problems and who feel we are broken records. We rejoice when the other party rejoices over the progress of their child. We are allowed to feel jealous and wish for the same progress without being judged. We are sad when we hear the other parents kids are deteriorating. We whisper  prayers for each other. We draw strength from one another and pull ourselves along the path. My friends feel like a support group because in no time, we exchange contacts and carry on our friendships even after the long/short stays. With these army of parent helpers as I love to call them, we are never truly alone. It is always interesting to meet them when we return to the hospital. It is of course sad to be back but for some of us with seriously unwell children, hospitalisation is unfortunately part of our existence. For this reason, it is inevitable that children’s admissions coincide and we see again. It is always fun to catch up on all the progress and gossip from the last time we were on the ward. Thanks for reading. If you enjoyed reading this, you may also enjoy some other topics we have discussed in this series. Photo credit: Pixabay

Hospital Life – The army of parents helpers.

One of the perks of being alive is feeling life flow through you. Sometimes this is all a parent carer feels thankful for. Trust me, I have been there. When you wake up day in day out in a hospital ward with your child, without a discharge date in sight, it can feel very dark inside even when the sun makes an early appearance in the sky.  You may feel ready to take on all the challenges awaiting on one day while you may feel stressed when you wake up the next day. Hospital life can be so unpredictable. They can range from being quiet and having a lie in on the ward to becoming quite full on with your child having to deal with so much pain. One good thing about being positive after all the lashing positivity gets is that it can help keep you in a good place psychologically and emotionally.You know I too like to stay positive. It can help you deal with things that are outside your control by giving you a calm head with which to face the situation. We all tend to only have the ability to give only what we have within us.  If we allow ourselves to be constantly stressed, frustrated and unhappy in our mostly challenging circumstances with our children, then that stress is all we will have to give. You may find that you begin to feel very irritable and pressured. Even the best among us have reported that at such times, they tend to snap at the Health care providers (HCPs)(who by the way mostly mean well), or even start having a go at their children. This brings me to the need to try to find if there is any way of finding this situation palatable. Can there really be anything positive about being in the hospital with your child? Hospital! How can anyone see anything positive about such an experience. Well, you will be surprised, I have squeezed out some positives that I noticed about this hospital life. The most  important one being the ability to have this conversation with you through this medium. It never would have happened if I was living my old life. So for that, I am humbled. I thank you! You learn to be patient : One virtue worth possessing in life is patience. Well, until you are stuck in hospital either as patient or carer, you would never imagine the level of patience buried within you. You have to wait, wait and wait for nearly everything. Wait for doctors to come, wait blood tests, wait for results, wait for your child’s to get better! It’s like an endurance test. This is a fine attribute that most parents in hospital posses which they take for granted. So here I am raising your awareness to it because it is a real virtue that you possess and should be proud of. You learn that you can be creative too : Another funny lesson you learn in the hospital is how to slow down.  Oh! I could just zap through life if I could. But with time you learn to perform activities very slowly to pass the time. If you do things too quickly then you are left with too much idle time which by the way fuels boredom. You start to find creative ways to pass time which only ends up being to your advantage as a human being.. At one point, I was going to the kiddies play room to collect colouring sheets to paint on. Imagine that level of boredom. You will, if you allow yourself get very creative. I know people initially struggled with this in hospital but later became gurus at passing the time. There are many activities that you can try. You can do some colouring, puzzles, crosswords, read books, browse the Internet, the list is endless. You get in touch with your social side : A beautiful privilege you can enjoy is meeting lots of different people. I was lucky to be in a hospital as rich in its medical prowess as it was rich in diversity. People from all over the world were treated there. If you look around you in whichever hospital you find yourself, there will be many people from various walks of life. Hospital life needn’t be all doom and gloom. It can be an opportunity to meet people, exchange ideas, hear people inspiring stories about how others cope with their struggles. Such stories derived through first hand interaction can be quite strengthening. You appreciate how adaptable your taste buds are : Although you might argue that hospital food is not the best in the world, you will agree that by trying various dishes on the menu, you become exposed to so many different types of food. do you realise that if you were not thrown into this situation, you would never have dreamt of tasting many of the near-delicacies you have experienced. Wether or not you enjoy them will be a subject for another day. So you might argue that what I said now was just putting a positive spin on your horrible food experiences. I agree but it does make sense. In all sincerity,  I have increased my recipe library as a result of trying out new tastes acquired while in the hospital. Just keep an open mind, you never know what you might discover.! You learn to be more prudent : Another important skill you acquire during a long hospital stay is prudence. Everyone knows it can be very expensive living away from home. You have feeding costs, transport costs, and even at times it can cost you your job and means of livelihood too! Sadly, not all bosses can accommodate long absences. You learn to spend wisely, find ways to reduce transport costs. For instance, I discovered that by downloading apps for the train, I could get very cheap deals on advance train tickets! You are also prudent with your time. You learn to allow […]

Hospital Life- hospital stay can have it’s lessons

As I stood at the reception waiting my turn today and just before me was a man waiting to be seen. It was his turn. He had his daughter in a wheelchair while he stood behind her hanging on some of the bags he was holding on the handle of the wheelchair. He smiled at the lovely receptionist. He seemed surprised to see her. After exchanging pleasantries, he announced that it had been three years since his last hospital appointment. Luckily, his daughter had taken a good turn these past few years. “She has been a good girl and stayed at home”, he joked. We all smiled. I couldn’t stifle my giggle. He was certainly a jolly good fellow. That was when he expressed his surprise at seeing the receptionist (confirming my initial thoughts). “How about Mason?”, He asked “Oh, he was transferred”, the lady announced sounding surprised. “You remember Mason? He left over a year ago”, she added. “How can I forget Mason?”, He asked turning towards me as he did. “Did you know Mason? Sorry I can’t help asking because he was such a helpful man”, he said. “Ah yes! I remember Mason, he was certainly one of the nice ones”, I replied. That was really putting it mildly. I had to give a short answer because I was in a hurry and couldn’t wait for it to be my turn. Honestly Mason was excellent. We could have gone on and on about his nice attributes and not run out of accolades to qualify him with. Every meeting with Mason had been an opportunity to be given a positive experience. One that you took happily into your day. The fact that someone who had not used the service for the past three years remembered him obviously said something about him. It got me thinking about how much of a shame it was that not everyone in the hospital was like Mason. You see, for a place where the primary aim was to nurse back frailty and care for less able children, it didn’t feel like too much to ask for! The last few years have seen the services rendered by the NHS decline at a geometric rate. We hear these things in the media about cuts to the NHS service, shortage of funds, pressures on the system due to rising population, migrant exploitation of the service, inability to hit targets set by the NHS governing bodies and we shrug them off. They really mean nothing to anyone who does not depend on these services to exist. Some of us see it either as an exaggeration or scaremongering tactic but it is actually a reality. Pressures on hospital services have meant that many of the staff are overworked and trusts are short staffed. Consequently, the end users of the service are left to bear the brunt. For occasional hospital users, this decline is neither noticeable nor worrying. However, for those who rely daily on the service to cater for their children, they cannot help but worry about the future. Despite all the grim facts, some staff still shine brighter than others. I joke in my head a lot about the medical profession being like priesthood where ideally you need to have a “call” to it. Although remuneration can be arguably attractive, without this “call” to the profession, challenges like the ones currently faced by the NHS create unfavourable experiences for end-users like parents, carers and ultimately patients. The attitude of many medical and auxiliary staff can be blamed on the level of pressures they have to deal with as a result of the shortcomings inherent in the system. However, the existence of a real call and genuine desire to be in the profession can create the right attitude amidst the trials. Merriam Webster online dictionary defines a calling to be “a strong desire to spend your life doing a certain kind of work… A strong inner impulse towards a particular course of action…”. For those who attempt to enter any field without the strong desire to do so, the challenges that the field might throw at them can potentially lead to a change in focus from giving the best to living for the perks on offer eg remuneration, holidays and other benefits. These perks are good but when they become the focus, they can cause disinterest in the job when hard times strike. At such times, they can make work feel more like a chore, become less enjoyable and frustrating. Subsequently the end users of the services rendered by these category of people become the proverbial blades of grass that suffer at the hands of their internal disagreements between the elephants of frustration and irritation at their job. So as it got to my turn to be served by this lovely receptionist, I remembered Mason. He had set the standard for me and I hoped to come out feeling positive after being served by the new receptionist . There is still hope for the future of the service. Despite the hard times, if all staff play their own parts properly, they can make a difference. This will make the overall experience enjoyable for staff, parents, carers and patients. Thanks for reading. If you enjoyed reading this, you may also enjoy some other topics we have discussed in this series. Photo credit: Pixabay

Hospital life : Attitude can make a difference to the service you receive

Many parents know how difficult it is to cope outside the home. What they do not realise is that it is even more challenging when that time outside the home is spent in a hospital ward. Unfortunately, children who became poorly may need a bit more time to get better in the hospital. The good news is that with a few simple steps, it is still very possible to cope even while in hospital with your child. Here are some tips for you which I have found to be invaluable to me as a parent carer. Stop feeling sorry for yourself– I know it’s easier said than done, but all that energy spent feeling sad and sorry for yourself will not change the situation with your child. What is more likely is that by feeling despondent, you will be kept in a state of emotional despair. Try not to dwell on the gravity of your circumstance, take things one step at a time. Ask practical questions about your child’s illness to help you understand things better. Find out about the treatment plan and try to follow the plan one step at a time. For instance, if there will be a blood test, before a scan to decide if an operation will be done. Don’t sit worrying about if the operation will be successful or if everything would ever be normal afterwards. These possible outcomes are real but quite far off. What I found easier to do is To break down the possible events into little chunks. After that, deal with the first part of that chunk sized problem. Next, you can work your way through them one by one beginning with the most imminent step. So from the above example, take the first step by presenting your child for the blood tests, next wait for the blood test results, then get the scan done, after that you wait for the decision about  if the operation will be carried out or not. Only then should you allow yourself contemplate the operation. Working through what lies ahead in this way will help reduce anxiety and keep you more settled. When the operation comes, the team will tell you the next set of plans. In some cases if the blood test results are fine, you may not even need the operation. Therefore if you have expended energy being anxious and scared, it would have all been for nothing. So don’t forget, one step at a time. Know when to ask for help – When parents care for their sick child , they assume full responsibility for them. At home, they are responsible for administering the medicines, preparing and feeds and performing various activities at certain times for their child. Most parents, guardians etc usually like to retain control over these activities even when in hospital. They sometimes request that staff allow them carry on their home routines for medicine administration and/or self-care. Hospital staff will normally accommodate this. However, it is important for carers to know that they can and must ask for help if they begin to struggle. It is alright to speak out without feeling awkward. Staff may not offer to help after the initial request to continue as normal. This is usually out of respect for their wishes. Therefore it may yield no result if carers continue waiting for staff to notice that they are struggling. Not reaching out can mean that help may be delayed. This also applies if you find you are getting stressed and cannot cope emotionally. Accept help especially when offered – Yes! this is a big one. When in any difficulty at times you may find people offering to help you. They may offer to help you take the kids to school, to help you do the shopping, to help you with the ironing. All you most of us keep saying is no no no! You need to realise that the more you decline, the more reduced your chances are of being offered more help in future. People do not like to feel like they are interfering or being too full on. Now please answer this question sincerely – why do you keep declining the help you keep being offered? When people offer you help, it is mainly because they want to. Do you just say no out of habit? Accepting help does not reflect badly on you in any way. It does not even make you weak or a burden. Remember, you are being offered. Even when you go asking for help, it is still a sign that you are strong enough to put your hand up when you feel unable to cope. It does not mean that your acceptance means you are unable to fend totally for yourself. It’s just help. Don’t over analyse why they want to help you. Just snap it up. People can see or sense that you are struggling and generally like to help. So please accept as much help as you can when you are in hospital. There can never be an overdose of help. Make sure you rest – Usually being in hospital is most times synonymous with stress. It becomes impossible to find a downtime amidst the troubles and trials. You must always bear in mind that you matter too. In order for the wheel of your life to keep spinning, you have to be well. If you break down, everything about your superb joggling act either slows down or totally breaks down. You cannot live on air or chocolate and crisps, you need good food and rest for optimal energy levels to be released by your body. So while I agree that it is hard to find good food in a hospital environment, you can at least find shops around that sell good fruits and vegetables, drink lots of water or even bring food from home where feasible. Try not to complain too much – Constantly complaining about your circumstance can increase your stress levels. If you find complaining to be a good […]

Hospital life- How to cope with caring for your child in hospital

A gastrostomy is a device inserted through an opening that is made surgically from the abdomen on the outer skin into the stomach. You can find medical information about the gastrostomy on the GOSH website. Having a gastrostomy tube, means that your child can be fed directly into the stomach. The kind of feeds that ideally go through the gastrostomy  are  in liquid form. So things like milk, water and medication are given through the gastrostomy. It is not correct to give anything into the gastrostomy if the doctor have asked you not to do so. Sometimes in children with stomach/abdominal problems, the gastrostomy is not for feeding into the stomach but for allowing excess secretions to be expelled from the stomach. There are many gastro-intestinal conditions that can lead to this but it is quite normal for the gastrostomy to be used for this. If this is suggested to you as a parent , please do not be alarmed. For us as a family, it was very traumatic to hear that our son had to have this bag. Considering all he had been through, we felt “what else could possibly go wrong”. The good news is that with time, we became more welcoming of this extra bag as we saw the relief it gave our boy. So if this is you right now, just hang in there! For the excessive gastric fluids (or juices from the stomach) to be expelled, a bag is attached to the end of the gastrostomy tube. The doctors used the term “free drainage” to refer to this new bag that our son had to have. You may also hear medical staff say “the gastrostomy is on free drainage” don’t worry, it means the same thing. So what do you have to do on a daily basis with a gastro bag? Here are 3 of the things I did and found most helpful: Empty contents regularly : The bag is emptied at intervals daily. Sometimes the bag can be full of air or bubbly juices. Removing the bubbles from the bag can also help to relieve the child. The bag should be emptied regularly because, if it gets too full, it will be heavy thereby pulling on the stoma (this is what the doctors call the hole through which the gastrostomy tube comes out of the stomach). It can also make the child vomit causing more discomfort. Check the colour of the juices – Ensure the colour of the juice in the gastro bag is not bloody, greeny or any colour other than advised by your medical team. If this is the case, make sure that you contact your medical team as soon as possible because it may be an indication of something. It may also be nothing but it is best to get their advice. Check the gastrostomy stoma site: Sometimes the gastrostomy stoma site can become smelly, oozy or have abscesses. You also need to check the site daily for this. If this is the case, you also need to let the medical staff know so that they can advise you. Sometimes, you may need to be seen for the doctor to decide what to do. It may not be anything major but as you know it is hard for doctors to make decisions over the phone hence, the need to see the your child for a proper assessment to be made. They may also take swab samples of the oozy gunk to look at under a microscope. This will tell the doctors if there is an infection or not. Some infections require antibiotics or other medicines to be ingested. Some other infections can be topical (on the skin). They may give you a cream to apply daily. Generally, these are quite normal occurrences with the gastrostomy that can be resolved if reported quickly. To help avoid ooziness around the gastrostomy stoma site, It is a good idea to clean it daily. Here is how I did: 1 – Use a disposable towel or a dedicated towel. 2 – Moisten with water 3 – Loose the triangle around the gastrostomy (PEG) this will not be required for a MIC button type of gastrostomy 4 – Clean around the site, wipe thoroughly 5 – Examine site for any irregularities or anything unusual 6 – Put triangle back.   If there is oozing  – report it immediately. Only after that and on doctors advise can you care daily. You can 1 – Follow steps 1-5 above * 2 – Apply cream if given. 3 – Put some gauze around the gastrostomy to soak ooze. 4 – Put some paper tape ( only if your are sure that your child is not allergic ) to hold it in place   For gastrostomy bags, there are nice pouches you can buy on amazon to help the child carry the bag discretely. These bags strap around the child’s waist comfortably and the gastro bags can be placed inside. If the gastrostomy extension is too mobile you may ask your HCP for clinifix to help stick the tube against the skin. For PEG users : To stop the gastrostomy disc from sticking/embedding into the stomach wall, ask your nurse to show you how to push, pull and rotate the device. This is advised once a week. You can: 1 – Open the triangle to release the gastro tube. 2 – Push it into the stomach up to one centimetre 3 – Rotate the tube 360 degrees. 4 – Pull back towards yourself ( the 1 centimetre that you pushed in early ) 5 – Secure back in the triangle Thank you for reading. If you enjoyed reading this, you may also enjoy some other topics we have discussed in this series. Photo credit: Pixabay

Hospital Life – The Gastrostomy Stoma Case

What would you like to be when you grow up? Do you remember the question?  All the answers we gave as children always saw us thinking of ourselves as successful high-flying achievers. One of the things no one imagined was the possibility of things playing out differently. Unfortunately, even with perfect planning, the uncertainty of ill-health sometimes rears its ugly head striking us or sometimes our loved ones down. In some families, the ill-health of a loved one does not come without demands. These demands are mostly down to the constraints imposed on the family’s financial, emotional and even mental abilities. Coping despite these new stresses can be almost impossible. Sometimes the illness of the child means that the current home may become unsuitable. It is very heartbreaking for a family home to be assessed as unsuitable for the child . It can leave the family members especially the main carer feeling helpless and inadequate in this regard. Some parents can be left feeling like they have failed in their duty of providing a safe place for their child to live in. Some have gone on to have a resentment towards the Health Care Professionals (HCPs) who make this assessment. These feelings are quite common but it’s important not to see these HCPs as enemies but as people who have stepped in to support the family. Many families find in the course of caring for their loved one that their current living arrangements may need to change. Homes may need to be redesigned to accommodate equipment like wheelchairs as the mobility needs of the sick child deteriorates. Some families may need more space to accommodate specialist equipment in addition to existing ones in the home. Endless reasons abound why formerly comfortable and cosy living arrangements may become inadequate. Moving house can sometimes be the inevitable option for a family. It is a difficult decision to take and carry out. Housing can be a very personal and emotional subject for most families. A house over time becomes a home, a haven and safe place where most family memories are created. The prospect is even made harder for a family with a sick child to contemplate. For this category of families, moving house not only entails the actual house “move” but also means that the services that support the family may have to “move” as well. The structures that have become part and parcel of the family’s coping mechanism may have to change. When there is severe illness in the home, support although readily available may be inaccessible to the family for reasons such as lack of information, time or a simple dis-interest. Over time as the family becomes even more pressured, they begin to become more aware of support structures and gradually access them. Accessing support requires time, patience and adjustment. It is hard to accept the interference of other parties in the home however well intended. Once accepted, families begin to adapt to their new routine and fit in this support into their daily routines to the point of comfort. This leads to a smooth flow of seamless support from the community to the home. When house moves occur, structures which are mainly tailored to suit the family’s peculiar needs may become altered, irreplaceable or totally lost. The prospect of this change can put a family off from taking the next step in accessing more adequate accommodation. Some families are lucky enough to find suitable housing within the same locality. For those who have to move far away, the case is totally different and adds to the already stressed family setup. Change of energy suppliers and familiar infrastructure which seem quite normal can be very disruptive to a family with a sick child. Children may need to change schools. For siblings or children in the home this can be very traumatic. The school setting is more than a place of learning to them. It is a hub of stability, a safe haven. The social ties and friendships formed impress greatly on them emotionally and psychologically affecting their overall well-being. These social ties protect their otherwise fragile and delicate emotions from the goings-on at home. Changing schools can bring even more disruptions to an already chaotic home setting. The familiar school setting can be the one “constant” amidst the dynamism that sums up their daily lives. For parents who live in the same community but have moved far from the school, the commute may be too strenuous for them to embark on with their children. Support exists within the community to help families through this adjustment process. The children and family practice, carers UK and even the social services can advise on issues relating to home-to-school transport, volunteer school-run groups. Changing the GP surgery can be another inevitable change to expect during a house move. The GP surgery is a structure that can evolves into a hub of information for the family. Many GP surgeries in addition to providing primary health care to all families act as sign posters to other services within the community that can support families with sick children. GPs kick start many support and diagnostic processes by making simple referrals which help families access further help. Moving houses may mean changing surgeries. It is normal to feel lost at the prospect of changing GPs. However it is worth noting that since 2015, all GP practices in England have been free to register patients outside their catchment area. Although this is totally at their discretion. it can be worth discussing your family situation with the surgery if you feel your child or loved one may not cope with the change. Things are easier when discussed with the right people. The cost of moving home may be of concern to the family. There is support out there to help families through this process. This can be provided by the social workers and/or community paediatric teams. In some cases where a bigger home is required to accommodate the needs of […]

Hospital life : when your home becomes unsuitable 2

Relationships Relationships! A lot has been said about how to keep your relationship flourishing, thriving and growing. There are tons of books about this. I find many to be very true with tips and tricks to revamp even some of the most written off relationships. However, I cannot help feeling that they are not in touch with my reality. You see, there are relationships like mine that start to feel cursed because of an un-foreseen external factor- having a sick child. At the early stage of a relationship, that lovey-dovey-you-can-do-no-wrong phase no one sees it coming. Two people come together, feel strongly enough about each other and then commit to share themselves entirely with each other. That decision forms the basis for what later becomes a magnetic union… a fusion… where children are supposed to spice things up! Well, not for everyone sadly. How about when having a child feels like the worst decision ever. A completely wrong move for you and for your partner. How can your relationship still go on to stand the test of time despite all the new challenges you both become beset with  and I forgot to add for no fault of yours…? Let’s insert a disclaimer here for the purpose of clarity. When I refer to relationships throughout this our heart to heart, I do not in any way imply that the two people must be married (although my religious beliefs may scream). I refer to relationships in both the rigid and loose sense of the word. Let’s just agree to see the relationships I am referring to as the coming together of two like minds hopefully for the long haul. Right? Good, now lets kindly jump right in! So how can your relationship thrive despite the challenges you face as a carer? How can you both still look at each other and still feel lovey-dovey?  Here are some ideas that I have found useful: Expressing yourself – This is a key ingredient that can keep your relationship  thriving. By expressing yourself in your relationship, you  overcome the trap of bottling things up. When a barrier exists between you and your partner, you will be unable to constantly share your problems with each other. The reason it is important to be able to rub you minds together as often as possible is that, ultimately, no one else can understand the gravity of your circumstance more than your partner. Take time to listen to each other. Within your relationship is an interesting symbiosis that holds strengths within it. Sometimes one person is strong for the other. But like a race, you ultimately keep passing this baton of strength to each other. Let pride have no place between you both or else the flow of strength will be limited. If one person is constantly strong and never allows the other to help them when they are weak then the pressure starts to  build up. For the stronger, the inability to keep expressing themselves  hinders self-release. It ultimately leads to frustration, lashing out and undue pressure. Similarly when the other person keeps leaning on the stronger one without getting a grip especially when it matters, they become weakened by the situation thereby losing the ability to be strong. By supporting your partner, even when you cannot feel it, you assume the strength that they lose when they are weak. You each then by that act allow each other to be toughened and strengthened by the situation and challenges you face. It is okay to cry. I cry, it is a nice release if used appropriately. However, like all in life, it requires moderation as crying constantly may trigger self-pity and at times build up stress. Sharing the pain – The challenge of having an ill child is easiest when shared. No member of your partnership must assume monopoly of the child. Mums tend to be guilty of this. They feel that they are the ones best suited to care for the sick child. This may hold true initially especially when the illness is short-term. For example the odd flu or immunisation temperature, the periodic flu and so on. However, when the illness is long-term both of you need to consider a readjustment. Sometimes illnesses stay longer than we think and if they are lifelong, then like with everything else you have to adapt the new routines to suit the family needs.  For starters, the child belongs to you both. It does not matter if both of you are biological parents or not. What matters is that you have both agreed to share responsibility. Let this  responsibility not be shared by mere lip service. Put it into action. Allow your other half to care for the child. If they cannot, help them to learn kindly. If you are learning, be willing to learn. Remember that a problem shared is halved. It is also good for the child to feel the attention from both parents. In addition, especially for parents with other kids, this swapping becomes very useful for the other kid(s). Remember like we said earlier, if you take on too much then the pressure builds up. How can your partner appreciate the challenges you face caring for the child if you do the caring all by yourself. It will be easier for them to appreciate your efforts by experiencing them firsthand.  If your partner is not helping out, encourage them to see that it is actually the responsibility of each parent in the relationship. Create time for each other – This is a very crucial factor. In fact it should be key. In the first place, you are both the bedrocks… the founders of your family. To ignore each other will be as good as switching off the oxygen in the relationship. You both matter. The parental challenges imposed on the relationship due to illness can put a strain on the romance once shared by you both. It is important to put the needs of the children first but do not forget […]

Hospital Life- Relationships

I saw something of my attention today. It was called the 6 C’s of nursing. I was very curious as I saw it conspicuously posted on the noticeboard in the hospital. 6C’s? I thought. A further look reviewed the wheel where each of the C’s were outlined. They were, care, compassion, communication, competence, courage and commitment. It makes sense that these C’s appeared to be the main things nursing was supposed to deliver. I furrowed my brows as I walked away giving each item further thought. I immediately embarked on an unintentional mental assessment of the standard of nursing that I had been exposed to since my son was born. As a team, hospitals dwindle around the standards they are able to deliver from time to time. For example on the weekends hospitals become like ghost zones lacking staff and standards. Facilities are not as looked after as they are during the week. Medical staff are not enough during the weekends. You rather find that weekends are covered by a few familiar staff, predominantly “locums” and  “bank staff”. To me these are mainly roving staff who otherwise have no way of appreciating the delicateness of some patients. Many have no way of knowing the promptness individually required to care appropriately for each patient. In this case not because they lack the skill or competence to do so, but because they have no prior knowledge of the patient as a result of their roving nature. The essential knowledge that familiar staff possess about the delicate patients is taken for granted by the recruiters of these roving staff. It should a prerequisite for caring for people with life-threatening diseases. Notwithstanding, we would never survive without the input of these roving “bank staff and locums” because they not only make up for the ever dwindling workforce on the weekends but stand in when staff go on holiday. Support from the weekday staff may help bridge this knowledge gap if their presence on the weekends can become more proportionate. With that said, sadly even the familiar weekday staff fall short of these 6C standards. Unfortunately not all familiar staff meet these standard 6C’s. The nurses to me should be an embodiment of the 6C’s of true nursing. Here is my layman understanding of what the 6C’s on that wheel should mean. Hopefully I will not be far from the truth but somehow pondering their deeper meanings may help put my thoughts in perspective about the state of nursing in general. Caring for the patients means that nurses should be interested in their patients. This will help them to know and care for them adequately. This level of care proposed by the existence of the 6C’s helps nurses bond with their patients enabling them tailor the care to suit each patient. Compassion to me is another essential ingredient of nursing. A heartless person without any human feeling or sympathy has no business nursing people back to health. Communication as a requirement is quite straightforward. Nurses must be able to understand or find ways to understand the needs of the patients. They in turn must be able to explain clearly their plans to their patients or the carers. Communication also entails understanding clear plans handed down by doctors and carrying them out carefully and accordingly. Nursing will certainly be brought to a halt if this element is missing. Competence is a prerequisite of nursing. A nurse cannot be a nurse until proper schooling and acquisition of the skills required for nursing has taken place. Personally, nursing as an institution has this responsibility to the public. They ensure that the nurses in hospitals are competent before permitting them to practice. I have noticed that further training of students are carried out through hospital placements. When new nurses are licensed, they still undergo further training on the job and are initially paired up with more experienced colleagues before getting signed off for things like medicine administration, cannula handling, using of equipment and so on. This ensures that competence is not only acquired but supported. Courage is another essential element. Nurses have to undergo many scenarios on a daily basis. Some are easier than others. From wound dressings, to highly pressured resuscitation scenarios. Nurses confront humans in their most vulnerable forms for example accident victims, mental health and even death. To expect a nurse to be courageous is an understatement. Courage is the element I think that gives nurses the strength to confront the various challenges that the nursing role throws at them on a daily basis. Commitment was the last element of nursing on that poster. It means that the staff who call themselves nurses must be willing to uphold all their standards of nursing every single time both in and out of the hospital. For example you expect a nurse to be a nurse at all times. You expect that they will show care, compassion, communication competence and courage whether they are in the hospital, on the street or train. There will be committed to saving human lives and fostering public health everywhere possible. As such, nursing is an extremely demanding job both physically and psychologically. However, as with every job done daily, over time, many nurses master these skills until they become second nature. Having been through many scenarios of care delivery, I find some nurses become either “more nursey” or “totally un-nursey”. I appreciate that these are not really words but I am sure you get the point. In my personal experience, some nurses take ownership of the job. The skills and experience acquired over time make them not only excellent nurses but transform them into extremely humane individuals. For these category of nurses, when you’re in their care you can feel at home. They become the embodiment of the 6C’s of nursing. On the flip-side, the other group of nurses allow their experience of nursing turn them into ogres without any human feelings. They become like ice, disregarding every single element of their 6C’s of […]

Hospital life : The 6C’s of nursing

  Caring for a loved one can be a fulfilling experience. The prospect of being the one that another individual looks up to for partial or total support can be rewarding. However after a while the novelty wears off. Suddenly the harsh reality about the unending nature of the now burdening role hits you. It is made worse especially when the loved one shows no signs of improvement. It can be an endless pull on an individual. The sad part is that carers can hardly confront these burdensome feelings without an equal weight of guilt. Pangs of guilt weigh them down each time they confronts their feelings of internal frustration. “Why should I feel this way?”, they think. “I must be a selfish person after all I am not the one who is poorly”. At other times another line of thought springs up; “I really have no right to feel this way because I am not the one who is sick”. Most times these feelings keep cropping up in their consciousness leaving them emotionally exhausted. It can feel like being carers means that their needs cease to matter. As though the needs of carers should take a nose dive in terms of relevance. I have been privileged to meet many carers who have expressed these same feelings at different times. In my experience, I have come to appreciate that although these feelings are common they are the least expressed. Carers are each alienated in their individual worlds and the mix of individual experiences as a result of this role, helps them find ways to suppress these feelings. On a short-term basis, it may be easy to bury those feelings somewhere within the carer until the need for providing care for the loved one seizes. This works only in instances where the loved ones get better and everyone lives happily ever after. Some of us are living our new lives as carers and each time we stay hopeful about having such outcomes, a new symptom resurfaces. We are then snapped back to the reality of the long-term nature of our roles in the lives of our loved ones. Sincerely, on the outside, and honestly most days, we do not complain. We carry on happily. Our abnormal lives become normal for us. In our respective homes we raised the bar for “normal”by the number of activities we become able to juggle more easily. Some of us complete record-breaking number of tasks daily. This in itself can produces a sense of fulfilment. On darker days, we remember ourselves. We are jolted back to the reality of the implication of the sacrifices we have had to make in order to be there for our loved ones. I call those dark days because for me, on those days all I can think of are the things I have missed out on in my life by being here for my son. The things I wish I could do, the things that continue to elude me. On those days I feel overwhelmed by the fact that I cannot get back out there to do something for me. I feel so aware that my dreams are not just impossible but also not feasible. At times meeting an old friend can remind us of things we used to do. Such meetings make us unconsciously compare the success and progress of friends and family with all our inabilities. This thought process tends to produce sadness… Somewhat of a sinking feeling. A yearning for a life we cannot have for as long as we remain carers for our children or loved ones. It’s important to pull ourselves out of these lines of thought. We can learn to focus on why our current roles as parents carers are also fulfilling. For starters, who else will care better for your loved one? Isn’t it a privilege that you are available to do so? You could have been unable to for many reasons and still felt unhappy. What if you became unwell, will you not expect another loved one to care for you? There’s no use beating yourself up about being the one stuck with caring for your loved one when you can enjoy your ability to be there for them. You can use the opportunity to show that you care and to pour out your love into them. It is helpful to think about the bigger picture of your role as a parent carer. It’s all about finding that point where your needs and that of your loved one are adequately met. Your needs matter too and must never be overlooked. You will find a way to meet your needs while accommodating the needs of your child or loved one who depends totally on you. One of the reasons I find that parents carers feel very frustrated in their new role is because they miss their old lives. They miss being able to do things in the ways they were used to for the became parents carers. Suddenly their lives are not theirs any more. They live for their children and lose themselves in doing so. They lose control of their time, associations and social networks, hobbies and activities that or add to the substance of their lives. All those things give a carers life more purpose. It makes them feel like they make a difference every day. Being able to control when and how these activities take place give the person a sense of control and a feeling of responsibility. Some of these activities pay the bills, provide resources for acquiring things or adding to the substance of that person’s life. In reality these activities give substance to one’s life not because of the activities themselves but because of what we are able to achieve as a result of performing them. Your job for example can give you a sense of purpose, make you feel responsible, help you feel in control of your life only because you let it. It’s all down to […]

Hospital Life: When caring for your loved one feels a bit too much

During my recent visit to the hospital school at Great Ormond Street Hospital (GOSH), the Special Education Needs (SEN) arm of the hospital asked for my feedback on the service. You see, my son Otito was admitted there for one year before he passed away. It was a service that made an absolute difference to him. He loved school and was very fond of all his teachers. They were absolutely brilliant. Looking back, I can only be grateful for their input because they not only gave him the best time in  what became the final days of his life, but also they provided us as a family with lasting memories which we will treasure forever. They asked me to highlight areas where they did badly but sincerely, I could not find any. All I found as I took the trip down memory lane were areas that could be improved on. Many of the you here have sick children or know people who do. Some of your children use GOSH London and other hospitals. I thought that it would be a lovely idea to share the feedback here to help give everyone an idea of what to expect from a hospital school SEN service. Another objective of this article, in addition to leaving this feedback, is to also add to the visibility that you will hear me propose at the end of this article. I hope you all find it useful and also gain confidence in using this service in whichever hospital your child is admitted especially if they have Special Education Needs (SEN). So let us start with the good bits…What worked? Child-led interaction: The GOSH SEN school program was centred around my son Otito. I thought that the fact that he was allowed to dictate the pace and direction that the activities took made him feel in control. This method respected and acknowledged not only his needs as a child but gave him dignity. It saw him as a human being and not just as a statistic that needed to be ticked off the box. The result was a boost in his confidence because he felt more able to flourish in his own peculiar way without being pushed beyond his abilities.  Do I think this child-led style of interacting with him worked? Yes! and here’s why It increased his confidence: Otito was given choices of activities to choose from each time. By selecting an activity he felt in control of the space and made him feel like he took part in deciding what he wanted. The child led approach helped the teachers decide the pace and speed that the session should go by not being pushy and overbearing in delivering the session. It helped the teachers stay in control of the plan and intended outcome for the session.This in my opinion, increased his confidence and modelled good behaviour to him. It helped him build trust: It helped him build trust for his teachers. Children like Otito with special educational needs- SEN are accustomed to being interrupted for interventions as a result of their complex health needs. This means that they become very protective of their own space. The child-led style of interaction helped reassure him that his opinions were acknowledged during the learning sessions. This helped Otito build trust towards the teachers that allowed him to learn. For a child like Otito whose complex health needs challenged everyone including the teachers, it was a relief for him to be able to take sessions slowly on gloomy days and enjoy more fast-paced sessions on perkier days. I remember times when Otito became unwell during sessions and how the teachers tactfully ended the session. For Otito his response was usually a mixture of dismay and relief. It made learning fun: The child-led teaching helped my boy look forward to teaching sessions. The fact that he was kept at the heart of the flow of the lesson meant that the whole experience became less of an ordeal for him. The child led interaction helped the teachers become more sensitive and empathetic towards Otito’s needs. As a result, they were more able to identify cues and behaviours that signified engagement, distraction or disengagement during the sessions. The teachers were very innovative in their expressiveness and choice of activities meaning that sessions were absolutely fun for him. This helped the teachers form a bond with Otito. This  further improved the teaching and learning experience for both teacher and student. Tailored teaching: It was very encouraging to see that at GOSH the teaching plans were tailored to suit the specific needs of the child. How? Initial sessions were used to assess the peculiar needs of my child before determining the particular equipment or tools to suit him specifically. This assessment also acknowledged feedback from us as Otito’s main carers about his particular likes or dislikes. There was a lot of observation of my child during individual play to help the teachers familiarise themselves with him, It helped the teachers make sense of what would or wouldn’t work with him. This method of teaching struck a chord with me as I felt that Otito was respected and dignified throughout the process. It allowed his perculiarities to be taking into consideration during the process of planning, preparing and executing teaching sessions. In his case, the teachers were able to determine what worked for him (for example music toys, light up toys, cause and effect toys and sensory toys) and what did not work (for example messy play and water play). Engagement: By mirroring Otito’s preferences with their choice of tools for teaching him, they were able to tailor the teaching sessions to suit him every time. Engaging him in this way not only kept him interested for longer, but gave the teachers the chance to keep steering him towards more complicated outcomes. It gave him the chance to excel at tasks we believed were impossible. For example by using light up toys, giggly balls, cause and effect toys and sensory toys […]

Did the Hospital school make a difference to Otito at GOSH London?

Today I wanted to tell you about an event I attended. It was in support of  the  Learning Disability (LD)Week 2017. I was privileged to be invited to sit on a panel alongside Experts and parents to share our lived experiences in order to help health professionals appreciate the impact of the care they provide through our own eyes. It was a fantastic day at Great Ormond street Hospital London. The heat was less, allowing us to have an enjoyable session. It always feels great to come home to GOSH! Mencap– the voice of learning disability in the U.K. Supported us and it was a fantastic and empowering event to have been a part of. The need for LD nurses on the NHS cannot be over emphasised. We talked about the huge difference staff could make in transforming care for children and the families of children who walk through the hospital doors. We revealed how important it was to have someone who understand the needs of the children. Nurses in their role could also mediate on behalf of the children when their voices could not be heard as result of their Learning Disabilities. Learning disabilities limit the ability of sufferers to understand and learn. It made them appreciate things slowly but not impossibly. Parents talked about the impact of a “smile” from the staff. It helped foster the always values of the hospital. It made them feel more welcome and made an absolute difference to stressful outpatient appointments. Patient said they wished they could be acknowledged more and included when decisions about them were being made. Breaking down communication by using simpler language helps patients with learning disabilities feel included. Non-verbal does not mean that a child or young person cannot understand. Body language and tone of voice hold a strong an essential key to communicating with them. They can help non verbal children warm up! We also discussed about the difference a little patience and empathy can make in the lives of patients and their families.  It was nice to hear feedback from health professionals about the our challenges with dealing with children with learning disabilities. Notable among the feedback we received was how the “Patient passports” that provide more detailed and specific information were found to also fuel the anxiety of staff in delivering the care. Worrying about getting things wrong with these children compromised the confidence of some staff. It was reassuring for them to hear from parents how much it meant to see staff go above and beyond for their children despite their inner misgivings.  Parents were acknowledged as experts with their children by the Health Care Professionals but ultimately, the general consensus was for there to be a partnership between all parties with the child always at the centre of the decisions. This was in line with the GOSH  slogan The Child first and always. The event closed at 4pm and we all felt richer and more informed. Chapter 18 of the book “Through our eyes: what parents want for their children from health professionals” written by Jim Blair and Parents was the basis for our meeting. Jim Blair is a Consultant nurse in Learning disabilities and an Associate professor. Mary Busk, Hayley Goleniowska (Author of down side up), Simon Hawtrey-Woore, Sue Morris, Yvonne Newbold (Author of Special Parents Handbook) and Stephanie Nimmo were all contributors to the book and Experts by Parental Experience.  Photo Credit: Pixabay                 EVALUATION AND FEEDBACK FROM STAFF AFTER THE EVENT Through OUR eyes what people with learning disabilities and parents want from health professionals   The majority of staff were nurses or HCA’s others were doctors, play therapists or from facilities environment design department    How well do you feel the learning outcomes were met today? ‘Very well, much more informative than expected’ ‘The session fully met my expectations’ ‘I don’t know what the learning outcomes were’ ‘I think the session was very important. I feel I can take away new skills and knowledge and use them in my practice.’ ‘x4 Very well’ ‘Beyond expectations.’ ‘V good.’ ‘No outcomes given at start’ ‘Very well, met my learning outcomes.’ ‘ They were met well. A lot of discussion that prompted other topics to discuss.’ ‘The session has been very usful. It has provided me with the knowledge and the experts experiences was interesting.’ ‘A good start, foundation to find out more. Good patient / carer interaction., More.’ ‘Quite well, very out patient based, maybe some more ideas of facilitate nurses and teams on ward area.’ ‘A really interesting discussion and insightful to hear parent experiences.’ ‘I feel the outcome has been met and even several spots have been touched on. I belive understanding, acknowledging, confidence have been the key aspects.’   How will today’s session improve your practice? ‘To not be afraid and be more confident when dealing with patients with disabilities’ ‘I will consider the specific needs of the LD community in the design of departments’ ‘Might consider exploring idea of artist led training sessions for clinical staff around LD’ ‘it helped me to understand the concerns the people with ld have’ ‘By talking what the parent and patient needs from listening. Listening to listen not listening to speak and by working in partnership with them’ ‘x2 Greatly.’ ‘Increased awareness of specific accommodations that can be made for people with learning disabilities.’ ‘it will help me understand the struggle, stigma and fight the patient and families may have been through and how to approach and respond to them. It also has taught me not to be afraid or fear them but to smile and be confident when dealing with a child who has a learning disabilities.’ ‘See, say hello and smile.’ ‘It will make me more aware of how I communicate with patients an dtheir family. As well as how I offer care.’ ‘By treating all patients with LD the same way but ensuring communicating in the way they need to be […]

Learning Disability Week 2017 at Great Ormond Street Hospital

My son Otito was born with a metabolic condition called Propionic Acidaemia. This condition sadly compromised his body’s ability to breakdown proteins. The implication of this was that he suffered with lots of metabolic decompensations and his body easily built up toxins called Ammonia in his blood. As a result of this degenerative condition, he was developmentally behind for his age.  His social and communication skills where severely impaired and he mostly existed in a world of his own. As a result, he was subsequently diagnosed with severe autism and learning disabilities. It was a huge shock to me as his mother to accept that my son would be different from other children. I took steps to overcome this feeling by getting as much information as I could once the diagnosis was made. His consultant at the time was very kind and eager to explain the condition to me. Before long, I understood most of the implications of the condition for my child. I also learnt about ways to spot the early signs of a metabolic crisis. Sadly, detecting the early signs did not prevent the metabolic crises that he characteristically suffered. The rate at which they occurred meant that he became a very unstable child. He became frequently hospitalised to keep him safe. Unfortunately, that also meant that he spent more time in hospital than we all would have hoped. By his 3rd  year of life, he suffered  a further complication of his condition with chronic pancreatitis and became hospitalised for one year to keep him safe. During his admission, we encountered many Health Care Professionals (HCPs). These were made up of medical staff functioning in different capacities and across various disciplines within the hospital.. While they all had the sole purpose of delivering excellent healthcare to our son, it was hard to get them to understand the care he needed because his level of development impaired his ability to express these needs appropriately. As his mother, I was also his advocate. I sprang to his defence like a mother hen every time his needs were missed. It was difficult to get the staff to listen. His inability to communicate left him non-verbal. He was also unable to express his emotions appropriately. For example, his expression of pain was not by crying or screaming as characteristically normal for most children. Instead, he became more quiet, withdrawn, less mobile and inactive. This pain response was mainly interpreted as being calm but not in pain. He was also very sensitive to being touched or held. During pain episodes, this touch sensitivity always became worse. His only position of comfort was always one where he could lie curled in a foetal position. He tended to pull in his limbs and stayed in the corner of the bed grinding his teeth. It was heart breaking to see him suffer at a time when he was closest to care. I cried for him every time he pulled away. I cried for the pain he could not express. I wished more than ever that he could do the same. I could not even communicate that to him. It was a helpless situation to be in as a mother. I could not pick him up to cuddle him or comfort him either as he could not tolerate such interactions as a result of being autistic. When the pain team got involved, I was a bit hopeful. However, his scores were low on their charts. The pain charts recorded higher scores for pain based on normal responses. For example screaming, being irritable and displaying active movements especially kicking to show pain was ranked highly. Incidentally, the pain endured by most pancreatitis sufferers I had met where always likened to excruciating labour pains experienced during childbirth. It was no wonder that the HCPs only disagreed with me every time I suggested that he was having yet another bout of the pancreatitis pain cycle. They could not justify the need to give the level of pain relief I was requesting since the pain scores they charted did not support my claim However, given his status as a severely autistic child with learning disabilities it was really not far-fetched. Their lack of experience with this type of autism that could lead to such pain responses in children meant that my son was unintentionally left to suffer. I knew I had to seek help for my son but had no idea how. As time went by my son became very withdrawn. While what the health professionals saw was more of a quiet boy, what I saw was less of my child and more of a chronic patient. To them his quietness was only a confirmation that he was after all unwell. We kept hitting brick walls at every corner trying to get him the help he needed in those first few months when he was admitted. It was while out on a walk along the hospital corridor one day that I made a discovery that changed the course of my son’s care for the better. After one of my routine arguments about the need to administer more pain relief for my son, I needed a change of scenery. That was when I accidentally stumbled across a leaflet hanging casually from a rack on the wall. It revealed the information about the existence of an expert in the hospital called Jim Blair who specialised in supporting families who had children with learning disabilities (LD). He happened to be a consultant and lead nurse in this area. Surprisingly and in the most unceremonious fashion, help finally arrived when I least expected it! Jim was very helpful and approachable. I was able to discuss my concerns easily with him. It was relieving to find someone-a health professional who finally understood my son’s plight. He simply got it! The pain responses that I described to him were anything but alien. In fact he said it was quite common with children who had the level of […]

Hospital life : Getting health care right in hospitals for people with complex health needs and intellectual disability

As I was on my way out to get some food this afternoon, I saw a group of people. There were like hundreds of them walking along the corridor towards me. They appeared to be on an organised walk. What was interesting was the presence of the lady in front of the pack. She should have left them to go on their own because they simply ignored her! There was a din. Lots of chitchat going on. Suddenly the corridor leading to the hospital restaurant was like a marketplace. The people seemed to be cooing at everything they came across as they walked past. “oh this”… “oh that”….”wow this”… “wow that”! Honestly, I could not understand why they all looked so surprised. It was a hospital after all and nothing was new. It had walls, interesting pictures, a lovely ambience, clean surroundings and so on. It really had nothing inconsistent with what you would expect from a hospital especially in England. …Yet the babbling went on… The lady moderator was speaking but it seemed like the more she tried to raise her voice, the less attention she got from them. As she screamed louder, it got worse. I found the whole idea of the walk around the hospital absolutely irritating. You see, Great Ormond Street Hospital or GOSH was one of the creme de la creme in terms of paediatric medicine in the world. It was always a privilege in itself to walk along such a corridor where historical breakthroughs had been pouring since 1852 when it was established. It was a hospital whose main source of funding addition to other means of funding was made possible through charitable donations and thankfully so. The well-meaning public through various methods contributed a great deal to the fund base at GOSH. This was why from time to time one could understand why the hospital opened its doors to members of the public. It was however highly appalling to witness a near breakdown in decorum when one of such visits was allowed. I imagined that it must have been exciting day out for these people. However what they failed to bear in mind was that it was “a hospital” in the first instance.It was a place of treatment and recuperation. It is therefore expected that the serenity, calm and tranquility of the hospital must be preserved and respected by all who walk through its doors. Although it is not likely that visitors will be given a tour of the main wards, they must be made aware that parents, carers and visitors to the hospital may find all the hullabaloo disturbing. They have to be more considerate about the feelings of these main hospital users who have to use the corridors alongside organised walks such as these. Personally, as a parent, seeing the people behave in this way made me feel a bit vulnerable. It made me feel like the idea of patient-hood was being put on display and made a show of. I know it was not the intended purpose of the exercise but perhaps if the decorum and tranquillity of the hospital was not disturbed, the visits by these people would have yielded a more positive experience for hospital residents like me. On a different day and at a different time, I am sure that many parents and carers like myself may have overlooked the noise. However, the feelings of parents and carers tend to be very erratic, varied and unpredictable. The hospital walls housed people who were being pushed to the limits of their psychological strength by the sickness of their children.These category of people unlike most have had to cope with all sorts of treatments, plans and news about their children. Many were very sleep deprived while others looked forward to the corridor walks as their only time of respite. While these seem like only a few minutes of break, for these parents, they were important even for their sanity. At the end of the day, it was still sweet and appreciable to see people take time out of their own busy schedules to visit hospitals especially  paediatric ones like GOSH. This act of kindness must take into consideration the feelings of all users. This way the thoughtfulness of the well-meaning  members of the public would translate into a good experience for all concerned every time it is expressed. So next time we visit places like hospitals, care homes, hospices and so on even for the sake of charity or any other reason, it may not be such a bad idea to follow the lead of the moderator, quiet down a little, step the excitement down a notch to allow our presence not disturb the peace of the place. This way the good we intend to do will count. Thank you for reading. If you enjoyed reading this, you may also enjoy some other topics we have discussed in this series. Photo credit: Pixabay

Hospital life: When groups visit the hospital

Having a sick child may mean that you have to accept many bitter pills concerning your child. One of such bitter pills is your child’s development. Every parent who has a child knows that one of the joys of parenthood is witnessing the attainment of various milestones by their child. It seems like the most natural thing to expect from a growing child. The beauty of beholding the newborn and watching them blossom as the months go by creates lasting memories that parents capture, share and treasure. Unfortunately, the incidence of sickness means that some families are robbed of this . It is a devastating blow for all parents in this category. From new parents who never get to experience these emotions to experienced parents who experience a certain kind of grief for their child. The existence of other children earlier born in the home means that there is a constant unconscious tendency to compare the inabilities of the sick child against the abilities of other existing siblings. Though not deliberate, this mental exercise can leave the carer in a state of grief and helplessness. For the new parent, this blissful ignorance is taken for granted. One of the impacts of lots of hospitalisation early in a child’s life is that the child misses the opportunity to experience the freedom of trial and error offered to them by being able to roam freely in their natural habitat- home. Children in hospital find themselves confined to beds, cots, playrooms and generally- four walls. This affects all children in different ways irrespective of their physical abilities. Even where physically able to explore, the restrictions imposed on them may be the only way to safely administer all that they require to be nursed back to health. For the more delicate and less able children, these restrictionss and their physical inability to explore their surroundings further compound the issues affecting their development. Thankfully not all children with life long illnesses have to remain hospitalised. Some recover as they grow while others are managed at home with medication, care and experience. Irrespective of the category Sick children later fall into, the long stays in hospital take their toll on early development. Some escape with mild delays that leave them playing catch up with their peers while others remain severely delayed. Speech delays, movement delays, feeding delays, social and communication delays are not uncommon. It is therefore important as a parent carer to be prepared in terms of your expectation from your sick child. While parent carers seldom admit that they set high expectations for their sick children, their sadness at their children’s inabilities can be interpreted as such. Here are a few strategies that a Parent carer might find useful in helping them deal with their feelings of sadness and helplessness concerning their child’s development; Give your child time : As highlighted earlier, children require time to recover from the effects of frequent hospitalisation early in life. Even older children who become unwell and needing frequent hospitalisation also suffer from these same effects. They deal with feelings of shock and uncertainty about the future. They also have little understanding about the effects of the new diagnosis on their lives. Parent carers need to give enough time for things to settle after their sick children are discharged for some of the effects of hospital long stays to wear off. For example A recuperating child who may be finding it difficult to settle back into routines at home may be seen as becoming difficult. Parents and carers also need to give themselves time to understand the full implications of the prognosis for their child’s future health, development and general well being. The dust always settles in the end and every family always finds a way that will work for them as long as they stay calm and patient through the whole process. Try to avoid comparison : The growth and development of a child can sometimes feel like a race. Children appear to constantly face comparisons because their levels of development seem to be constantly measured based on scales and milestones. In reality, these scales and milestones should only be guides as they are derived from averages and do not reflect the differences inherent in the vast population of children’s statistics from which they are derived. More importantly, when a child is sick or recovering, these scales should not apply. Every child is different. Even two children with the same condition may be affected differently by the illness. Therefore to cope better with the possibilities regarding a child’s development, it may be a good idea to view your child individually and measure their progress based on what they were previously able to achieve so that even the most infinitesimal progress can be celebrated. If comparisons are necessary, then they have to be fair and be from a category that the sick-child actually falls under. Do not be too hard on yourself : It is quite common as a parent to beat yourself up about everything relating to your child. This is usually more on parent carers or any parent under any form of stress as a result of the pressure imposed on them by virtue of their position as parent carers. Parent carers may experience sadness because they feel like they are constantly comparing their child one minute and not comparing them enough the next minute. These feelings are very normal. Every parent wants the best for their child. It is quite normal and natural to look up and see how we are faring against others and just because you are a parent carer, you are not exempted from this feeling. What is really not normal is for a child to be unwell and so this is why your child is falling behind. You have to come to terms with this in your own time and at your own pace. While getting to the point of understanding your child, try not to spend most of the time beating […]

Hospital life : Worried about your child’s development

I have now stayed over one year in the hospital with Fred and a whole lot has happened since then. There have been tears, laughter, sadness but most importantly, hope. Just “good old hope” about positive outcomes or at least finding the positive sides to our outcomes whatever they may be. One very interesting should I say side effect of the whole hospital experience has been that I have become more “hospitaley” than I would like to admit. I can now exist in chaos; beeping machines and screaming toddlers make up the sound track of my life. I have turned into an art waiting an art. Somehow I have become less fussed about dates and postponements, they always come in the end no matter how far they are thrown. One less part is that I can now eat bad tasteless food. I can eat fast foods, bad food, good food and you would never tell from my face. My taste buds are as bad as my ears to less than desirable foods and sounds. I have also conveniently forgotten how to do house chores, live at home and be normal. Our life has been quite split into hospital and domestic. Karl handles the domestic side expertly ( and for that I feel blessed and remain thankful) while I handle the hospital side. It has been working for us. Fantastically, I must add because as “Adam Smith” said – division of labour leads to specialisation. Karl and I have become gurus in our chosen fields. Sadly the downside is that I have now honestly forgotten how to handle the domestic side. One of the mums on the ward calls it “being institutionalised”. I can still cook (that will take more than a year to get de-skilled) and that but when I say I have forgotten the domestic side, I mean, I now experience a feeling of apprehension when it is my turn to stay at home with Mark. I find I secretly can’t wait to leave. No one notices this but deep down, i know my brain will rather do what it has now become used to – cleaning beds, clearing up vomits , chanting nursery rhymes, making sure Fred is fine. It is stressful but it has become my new normal. I can’t seem to find where things are kept when I am at home. I can’t get over how much Mark has grown. He sees through our white lies (which by the way are meant to be my parent secret tools). One year is a long time in a child’s developmental clock and it seems like a shame to feel a sense of loss. There is always time to do something. Many parents with sick children especially those who have long admissions can relate with this. There are some ways to try to overcome this hurdle: Communicate: If you feel left out of the lives and routines of the family, it may be time to have this discussion with your partner or one who shares the care of your family with you. Keeping your frustrations bottled up may not allow you find solutions. It may fuel your helplessness. For those without partners or who are single parents, it may be a good time to speak with HCPs or social services. They are there to provide support and signpost you to other services that can assist you. Swapping: It may be a good idea to consider swapping. By swapping I mean allowing a partner, family member or person of trust swap places with you for a few hours or days at a time depending on what is available. No matter how little the time off is, it will still be helpful. Some local authorities provide only a few clustered hours of care depending on the family needs and what is available. Do not decline help except you are sure that it is not really suitable. My rule of thumb is to accept anything I get to enable me consider my options before declining I find it is easier than declining and later realising it may be a good idea to avoid disappointment. Maximise the quality of time spent with the rest of the family as the time at your isposl may vary and be limited, it is not such a bad idea for you to plan the activities you intend spending with your other children or family members. Remember that if you only plan to do anything, you may end up doing nothing. Also, having a plan will endear positive sentimentality towards you. It will make other family members or children feel important and cared for. The siblings of sick children normally feel neglected. Little steps towards improving the quality of the time you share with them can help foster family unity which in turn can be stress relieving for the caregiver. Don’t feel guilty: As long as you have made adequate arrangements for the care of your sick child, there is no need to feel guilty about the time you take from caring for your them. Guilt is emotionally exhausting. It also robs you off the enjoyment of the short time you have to spend with the rest of your family. It can make you appear absent minded and unhappy to be with the family. The other siblings can pick up this from you and in some cases resent you for it especially when they can compare your mood and demeanour and find a sharp contrast between your behaviour with them and the sick child. You deserve a break. Spending time with the rest of the family is good and healthy for you. It can make you happy. Happiness impacts positively on your overall well-being as a person. When your well-being is improved, you can feel refreshed and rejuvenated, becoming the best carer you can be. Make time to rest: resting can help lighten your mood and leave you feeling less stressed. Time spent with the rest of the […]

Hospital Life- The past year

Those of us who spend longer than the normal time in the hospital know that it becomes inevitable that new “weird” associations become formed. It becomes normal to be intertwined in the lives of the doctors, nurses and staff looking after your child. As much as these health professionals will prefer to keep all dealings with parents strictly professional they seldom do. Such a feat is only easily implemented and achieved with parents that embark on flying visits to the hospital with their children or loved ones. However, for the rest of us who have become co-opted into the “lifetime users’ league” (if ever we had an office) of the hospital wards, this is simply impossible. Daily we witness and are privileged to share different milestones with these health professionals. They become like family to us. Some undergo their training placements and begin being supervised. Others progress into the next level, getting signed off by using our children as learning vessels while we watch them grow in confidence. In no time, and right before our  own eyes, they become qualified doctors, nurses, healthcare assistants and so on. Similarly, sometimes we are privileged to snoop out some of the gossip. Some become married,  divorced or even pregnant. Others go on maternity leave, holidays and secondments. These various experiences bring with them different emotions that we as parents become privileged to share in mostly by virtue of our perpetual presence. We then experience some of these highs and lows with them. They in turn become our friends, standing by us emotionally when we are sad. Since our moods determine how we deal better with the challenges we face as parent carers, they make it their duty to scoop out some of our personal gossip and help us work through some of our challenges. They are happy when our children improve and shed a tear when they get worse. The funniest is the bittersweet feeling they experience when we finally get discharged. We imagine that they are sad to see us go but happy that the child is well because  they know the family will finally enjoy some stability while it lasts. On the day I wrote this article, it was the day many of the doctors finished their placements in our hospital. Many of them got transferred to other hospitals. I imagined it to be our turn to experience the same bittersweet emotions. Unfortunately, the finality of these exits unlike the type of emotions ours evoked in them brought with it a sense of quiet dimness. In our case, we were always expected to return. However, in their case, it was final. I felt truly happy and privileged to have known many of them, yet sad to see them go. It was a career growth for them and a good thing. I knew however that it was going to take me time to adjust to. My son although oblivious of these as a result of his health constraints was caught up in a net of endless cuddles and coos which he seemed to endure. He hated being smothered but on that day we made an exception and permitted a squish here and a squash there. They wished they could take him along. Clearly he had left an impression on them and hopefully his zest for life would be theirs to remember forever (especially now with his abrupt exit). As for one of his favourite nurses, her departure was especially felt by me. It was a big blow because when we started to say goodbye it was only because we thought she was off on holiday. Sadly, the cat was let out of the bag when I found  her getting extra cuddles from her colleagues. That was when I realised that her departure, like the doctors’ was final. Our sweet nurse was off to pastures new, pursuing her dream of a lifetime. She was part of the team that looked after Fred at birth when he was diagnosed. The thought of saying goodbye to her felt like a snip to the umbilical bond that I attached to her endless presence. She was meticulous, professional and had an unrivalled sense of attention to the minutest detail. It was our loss but certainly a huge gain to the new hospital. As for one of the doctors who I like to think of as Fred’s favourite in an ironical sense, he had grown to endure her endless cuddles until he began to expect them. He stroked her hair and smiled sometimes to show his approval of her. We all knew that to be a big deal in Fred’s books. It feels like the end of an era when I think of it now. Like Dorothy said in Wizard of Oz,  “people come and go so quickly here”. It is the cycle of life. Everything keeps moving. People keep coming and going in different ways. These were people who formed a big chapter in the story of our lives. It is this chapter that was forced shut by the events of the last couple of weeks. Now we have to look ahead towards meeting new people, creating new relationships, and experiencing new challenges in not only our hospital life but in our life as a whole. So here’s a big cheer to you all… Our crew! We wish you all the very best of luck for the future. May the sun always shine down with a smile for you all. Thank you for all your efforts. The battle is now over for Fred but it was a blessing to have had your input for as long as we did. Ciao! or as they say in the movies “Astada vista!”. So amidst these cheers and tears of joy I ask you … Have you ever had to say goodbye to some of those in the care team for your child or loved one? Thank you for reading. If you enjoyed reading this, you may also enjoy some other […]

Hospital life: Saying goodbye to some of your Child’s team members.

Some children are sick for prolonged periods, warranting the need for at least a parent, guardian or loved one to stay with them in hospital. This provides the much needed companionship, warmth and familiarity that children miss out on by being hospitalised. Hospitals across the country do a lot to support parents when their children are sick in hospital. One of such fantastic support provided is accommodation. By accommodation I don’t necessarily mean providing a place for a parent to stay outside the hospital ward. I also include the acceptance of the fact that at least one parent is allowed to sleep beside their child overnight. Usually hospitals provide beds for at least one parent beside the child on the ward .The bed can be a folding bed or sofa bed depending on what the hospital can afford. This humble boarding “accommodates” the parent right next to their child. Provisions like these seem like the logical ones for hospitals to make for parents. However, in the past this was not really the case. I was once told by an experienced and retired nurse that in the good old days (over 20 years ago now) parents were only allowed to come into hospitals for visits. As time went on, these visits led to children endlessly longing for their parents. Not long after, the whole visitation arrangements that enabled parents see and interact with their kids by visiting the wards were scrapped. This decision had far reaching effects on the children because they were left feeling sad and abandoned. Thankfully many years later, the decision to allow parents stay overnight with their sick children was made. Now parents can enjoy the privilege of being able to nurse our children back to health alongside the healthcare providers within the hospital environment. Hospitals now allow parents visit their children at anytime with at least one parent expected to stay overnight with the child where possible. Hospital admissions can be planned and unplanned. In some cases admissions may occur on an emergency basis. Emergency admissions are not pre-planned they usually occur as a result of an unexpected deterioration in the condition of the child being cared for. When this is the case, some hospitals are able to provide emergency accommodation for both parents but not usually including siblings. This mostly happens in the case of children needing intensive care. Otherwise, hospitals customarily provide accommodation for only one parent by their child’s bedside. Recently we fell into the category of parents needing emergency accommodation as a result of an interesting and somewhat unexpected reason. Otito had outgrown the baby cot provided by the hospital. We certainly could not blame a child who had stayed one whole year in the hospital for growing. As weeks turned into months, we saw this progress but could not really have a formal conversation about a transitional bed for him. There always seemed to be so much going on with his treatment medically which made this type of conversation very secondary. In the meantime, Otito decided to entertain the doctors with a very disturbing acrobatic display during the last “ward round”. As you can imagine, his doctors were in horror. In an instant, the conversation about a transitional cot for him became began. It was clear that something needed to be done to ensure his safety. Somehow, without realising it, Fred himself had given us the nudge we needed. Something was finally being done to make his sleeping arrangements safer. By morning, a very large “specialist” cot-bed became our only option. It was humongous in fact the bed looked like a cage. It was a big transparent box-like bed. It was as wide as it was high. His hands could hardly reach the top of this new cot-side. He was definitely safer in this bed and perhaps even too safe. Our joys were short live as in no time, we began to experience some slight technical issues with the new box-bed. We missed the old cot bars because we could not reach him easily in the bed. We also found that the emergency resuscitation kit was difficult to connect to him whilst in the bed, That was how huge the bed was. We also lost the space for the parent bed beside this new cot. Unlike the old baby cot which had sliding sides to carry him in and out, this new cot bed had a large door which opened outwards, needing more room to operate the bed and robbing us of the space in the already small corner, It was agreed that we needed additional accommodation to be provided for us – Otito’s parents. It would have been a bit straightforward if I was the only parent. Or if I had a female partner. I say this because the only emergency accommodation available was for women. In a place called “the mother’s unit” women were being accommodated. Men were not allowed anywhere near the unit. I had always heard of “the mother’s unit” in the hospital and automatically assumed that there was also a father’s unit. Even though I had never heard it being mentioned, I still assumed that it was because fewer fathers stayed in hospital compared to mothers. Never in my thoughts did I imagine that it had never been mentioned because it did not actually exist! In 2017 it was highly inconceivable that a provision was being made for women and not for men. In an era of equality. A time when human rights had taken centre stage. Where the adage what is good for the goose is good for the gander was seen being made apparent even when it was irrelevant. Well I found this out rather unceremoniously at the event of Fred’s growth and development. Considering all the bad news we have had to deal with in the last year, the one positive news that Otito was growing as he should, finally doing what he should naturally do without any help- growing had to be marred […]

Hospital life: Father’s needs matter

Moving house can sometimes be an inevitable activity for a family. It is a difficult decision to take and carry out. It is hard for a family with a sick child because not only does the house “move”but even the services that support their family may have to “move” as well. The structures that have become part and parcel of the family’s coping mechanism may have to change. When there is severe illness in the home, support although readily available may be inaccessible to the family for reasons such as lack of information, time or a simple dis-interest. Over time as the family become even more pressured, they begin to become more aware of support structures and gradually access them. Accessing support requires information, time, patience and adjustment. It is hard to accept the interference of other parties in the home however well intended. Overtime, families learn that their new routine will involve accepting this well meaning “support”. The family adapts to the support they receive to the point of comfort until there exists a smooth flow of seamless support from the community. When house moves occur, some of these structures which by the way are at times tailored to suit the families peculiar needs become altered, irreplaceable or totally lost. The prospect of this change can discourage a family from taking the next step to accessing more adequate accommodation. Some families are lucky enough to find suitable housing within the same locality. For others who have to move far away, the case is totally different and adds more stress to the family setup. Changing energy suppliers and other familiar infrastructure seemed quite normal but can be very disruptive to a family with a sick child. Children may need to change schools. For siblings or children in the home this can be very traumatic. The school setting is more than a place of learning to these kids. It is a hub of stability, a safe haven. The social ties and friendships formed at school impress greatly on them emotionally and psychologically affecting their overall well-being. These ties protect their otherwise fragile and delicate emotions from the disruptions that having a sick sibling can bring to the home. School becomes the one “constant”amidst the dynamism that sums up their life. For parents who live in the same community but have moved far from the school, the commute may be too strenuous. Support exists within the community to help families through this adjustment process. The children and family practice, Contact a family, Carers UK and even the Social services can advise on issues related to home-to-school transport and volunteer school-run groups. Another aspect of moving home may involve changing the General Practice or GP surgery. The GP surgery that the family is used to can be a structure that evolves into a hub of information for the family. Many GP surgeries in addition to providing primary health care to all families act as sign-posters to other services within the locality that can support families with sick children. GPs kick-start many support and diagnostic processes by making simple referrals which help families access further help. Moving houses may mean changing surgeries. It is fine and totally normal to feel lost at the prospect of changing surgeries. However since 2015, all GP practices in England have been free to register patients outside their catchment area. Although this is totally at their discretion, it can be worth discussing your family situation with the surgery especially if you feel your child or loved one’s condition is too delicate for a new surgery to adapt to. Things are easier when discussed with the right people. So while it may be a stressful time for you, we hope that you do not feel alone at this time. Thank you for reading If you enjoyed reading this, you may also enjoy some other topics we have discussed in this series. Photo credit: Pixabay  

Hospital life : Moving home when you have a sick child

I have now stayed in the hospital for over one year with Fred and a whole lot has happened since then. There have been tears, laughter, sadness but most importantly, hope. Just good old hope about positive outcomes or at least finding the positive sides to our outcomes whatever they may be. One very interesting should I say side-effect of the whole hospital experience has been that I have become more “hospitaley” than i would like to admit. I can now exist in chaos; beeping machines and screaming toddlers make up the sound track of my life. I have turned waiting into an art. Somehow I am now less fussed about date postponements, cancelled procedures and generally people turning up late for simple conversations. I have learnt that no matter how far into the future a particular time seems, it always comes in the end. Another thing I can now interestingly do is look forward to meal times with some optimism however unpredictable the actual “plate of food” may turn out to be. I have learnt to eat and even enjoy bad tasteless food. My expectation from food has moved beyond tastefulness and presentation to just good old satisfaction! With this new focus, I have now begun to also make an art of feeding myself. All old fussy eating habits have been laid aside. I can eat fast foods, bad food, good food, smelly food, watery food, hard food (I think you get the point). I eat them without giving away the true blows dealt to my palate as they are being consumed.  My taste-buds have unfortunately become as dead as my ears to less desirable foods and sounds. The other side to  becoming “hospitaley” is that I have become a deskilled mum on the home front. It feels like I have somehow forgotten how to do house chores as happily as I used to. My brain cannot seem to settle into my normal life at home. I keep feeling I need to go back to Fred in the hospital when I am at home with Mark. Our lives have been quite split into hospital and domestic. Karl handles the domestic side expertly (and for that I feel blessed and remain thankful) . I handle the hospital side of things. It has been working for us fantastically I must add. We have proved the famous Economist “Adam Smith” right because like he proposed, division of labour has certainly led to specialization even in our home. Karl and I have become not only guru’s in our chosen fields but also feel very satisfied and settled into these roles. Sadly, the down side to this division of roles is that I have found that I do not cope very well handling the domestic side of things when I go home. It is not easier to be in the hospital either but I guess the brain just prefers doing what it has become used to. Cleaning beds, vomits, chanting nursery rhymes, being the entertainer, teacher and making sure Fred is okay is also challenging. It is stressful but it has become my new normal. I feel a sense of panic when I have to go home. I can still cook (that will take more than a year to get de-skilled) and that. However, I have noticed that I now experience some apprehension whenever it’s my turn to stay at home with Mark. I can’t seem to find where things are kept when I am at home. This makes me feel like a stranger in my own home. I can’t get over how much Mark has grown this past year and it hurts me as a mum that I have missed out a lot on this part of his life. One year is a long time in a child’s developmental clock and it seems like a shame to feel a sense of loss because I have been absent most of the time. I feel too tired to play and either want to constantly sleep or leave. No one notices this but deep down I do and it leaves me feeling sad for my son. He deserves to have me fully too and although he cannot know how I feel, I still carry on. I don’t believe that I am alone as a mum and carer. These feelings that I experience and keep safely internalised are very common amongst many parent carers. During my numerous interactions with parents around the hospitals I have been privileged to visit, this is a resounding dilemma. So as a parent carer who is already stretched by the demands of a sick child is it possible to stretch further to accommodate the demands of parenting your other children or loved ones? Honestly if you are not able to do more than you are currently doing, no one will blame you. The only thing in my experience that I find is that in the long run, you still feel cut off from the rest of the family. So why the need to find a way to address this issue? The existence of each child/children on either side of the sphere- home or hospital means that as parents we have to deliberately step out of our comfort zones. So although staying put on either side might work well for our families, we have to find a way to alternate between these roles for the sake of the children. It puts more demands on us as carers but it helps address the needs of the children. Each child in a home deserves the attention of each parent where realistically possible. We miss out on the lives of the other children if we stay put at home or in the hospital. This need to create time for other children is not only restricted to parent carers in hospital, It also extends to carers whose sick children’s demands at home make it nearly impossible to give any attention to the other children. It can be misunderstood unfortunately by […]

Hospital life : Finding the right balance when you have other children

It was one of those evenings where I had decided to write a piece. It was turning out to be an emotional one but I could not stop myself from writing. Honestly, I was enjoying the distraction but at the same time, it was beginning to feel exhausting as my eyes were hurting and so were my wrists in short, I was just knackered. I knew I had to stop writing but my fingers just carried on pouring out my thoughts and I just continued to write with a life depending urgency. I had been through a stressful day with Fred and as always, writing was my stress relief therapy. When suddenly, tap tap tap..  I looked up and … phew! I stopped writing. I felt like the blaring speakers must feel during a power failure…relieved. It was like my writing jinx had finally been brhellos oken. It was the nurse just coming to announce to me that there was a parent carers art workshop downstairs at the activity center. Normally, I would have declined but I had to admit to myself that I needed to relax in another way. I accepted the invitation and abandoned all my writing materials. In a few minutes, I had my coat on, bag in hand, scarf on neck, sandals on feet and I was out of the ward like flash. As the lift descended, my thoughts were tilted towards the pleasures that lay ahead- colouring, painting, cutting, sticking and a bit of messy play like the kids… what could possibly go wrong? The thought of mingling with other parents all stuck in this hospital for different reasons (but seeking the fulfilment of our one elusive desire-fun!) gave me the oomph I needed to press the buzzer before me, I had a smile spread across my face when the young lady let me in. I bet she thought I was being polite. Honestly only you can tell her the real reason I could not stop smiling. “Bring on the art!” I thought ,as I walked in. So this young lady dressed in jeans, a top and black cardigan ushered me into a room with only a handful of parents. I could feel my smile begin to turn upside down but I was not going to let the poor attendance dampen my fun quest. I was greeted by the artist-in-waiting who quickly took over from the young lady. I said my hellos to everyone and sat down for the briefing being delivered by the artist. He said something about cutting ( which as you know was right up my street) and making box cards – pop-up ones (hmmm… I was not sure I liked the sound of that) but I was going to have a go anyway. It sounded easy when he described what we had to do. The other parents seemed to be Picasso’s and not even budding ones at that mind you. Their art pieces were starting to pop-up (but to be fair, they had started their work way before I walked in).  It was beginning to feel like art class. I am not sure how I felt about that. Anyway, the best thing for me to do was watch. Honestly, I was too tired and had lost ounce of competition left in me. I felt snuffed out. The events of the day had left me too exhausted to speak. I just watched and listened  to every chatter and banter. I became an on looker somewhat of a floater in this room that was not-so-filled with parents. It was fun to see them concentrating and creating art works from scraps of everything that was available from card boards to coloured paper. It was amazing and I must say relaxing. I wan in fact feeding off all their positive energy like a monster. By the time the artist came to inspect my work, I had nothing but cardboard and papers to show. He was really funny and gave me a slight nudge with his words. I started to glue something but the paper was so blank, it looked whiter than snow. In the end, I found a bowl of grapes and crisps on the side for company. At least it helped me showcase my creativity in the chewing department. It ended up being a relaxing evening. I had a nice chat, tea, crisps and company. There was also lots of colouring and creativity to brighten my evening. At least it was fun to see everyone else do something nice apart from caring for the little ones. I have added a few pics from our little parent carers art workshop for your viewing pleasure here. Hey, we might even have an exhibition soon. well done to everyone who attended including the organizers. If you are at the Great Ormomd street Hospital (GOSH) London, the Parents carers art workshop is held every last Thursday of the month at the activity center. You can find the activity center in  the Southwood building level 2 . You can join other parents and relax for a few minutes cheers! Thanks for reading. Related posts are  Boredom Busters and you can also click here for more. Photo credit: Pixabay

Hospital life : An Escape To the Arts Workshop

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I remember when Otito was born… Life went wrong. We felt lost. In an instant everything came crashing down on us. We were at the centre trying to make sense of it all. A simple birth had turned out to be a disaster… One that was heading in the direction of the disaster we had a few years earlier. At times we reached out to others but it felt like the more we did the more we were misunderstood. Social circles disappeared, best friends walked away. Not because they did not care but because they could not care. They lacked in them the ability to be for us the comfort we sought in the new circumstance we found dictating our lives. It would have been easier to bury our head in the sand and pretend that by locking away our feelings, our problem will disappear and Otito will be perfect. But we knew that although the ground we stood on was sinking, we still had to find a way.  It was only then that we were able to raise our head up from the sand. That was when we understood that we were never alone to start with. We were surrounded by people who wanted to help. They were all new to us, but they could only take our hands if we reached out. That is what we saw when we found you …. We saw your smile and it gave us hope. We heard your voice and filled us with joy. It was not the kind of joy or hope that made our pain go away. It was rather the kind that melted away the fear. You have stood by us from near and from afar. You look after us as a family. To you it’s just a job. To us it is a lifeline, a job only you do best. We know sometimes you get it wrong and nobody said you were perfect but the fact that you keep trying means Otito’s life is what fighting for. You see, you came into our lives when we were at our lowest. We thought all hope was lost when our son Otito was diagnosed. But you did one beautiful thing. You never hid anything from us about the full extent of our reality. We have never felt ignored, fooled or taken for granted. You have treated us with respect and preserved our dignity as a family in more ways than one. The more we reached out to you, the more you stood firmly by us. Always reassuring and never pushing us away. We could never have carried this burden without your expert help and strength. For this we are thankful…. The end of the year for most people ushers in the yuletide season but for us it means way more than that. It is always a time of reflection for us as a family… a time when our consciousness is drawn to how lucky we are to still have Otito in our lives. The end of this particular year marks the fourth year in the fight to keep Otito alive and stable. It has been by far the most difficult year for him as a person. In our eyes it has also been the year when the depth of your knowledge about his condition has been tested the most, weighed on a scale but never found wanting. There have been times when we have wondered about the sense and worth of this fight…times when the illness has made Otito less of a boy and more of a patient. Times when he has been reduced into a literal ball of pain curled up in his cot. At those times our strength has been drawn not just by Otito’s zest for life but by the reassurance of your expertise and unrivalled professionalism in carrying out the duty of care to him. We have found our way as a family. We have found our rhythm during this most difficult year but never without you all being beacons shining brightly and pointing us in the right direction. There have been those who touched our lives in ways that have not been medical but which we have found invaluable. Some found us and touched our lives without even knowing us directly. Although they remain far away from us, their contributions and works of charity have doused the fire of stress and chaos that sometimes envelop us as a family. Their efforts have nearly eliminated our confusion and struggle at times. Some others have supported us emotionally, psychologically and even spiritually with their prayers. We thank …. Rays of sunshine, Gosh Charity, Family fund, Newlife Charity, Campbell burns trust…Just to name a few… You plastered a huge smile on our faces when you touched our lives and spilled that ray of hope in Otito’s life. Let your benefactors know that your drops of kindness to us although little to you, were big enough to enlarge our ocean of love and support. He may never personally understand your kindness but we see his positive energy and know that if he could he would appreciate you. We thank you all… For everyone who runs, walks or clicks their glass to different charities we want you to know that your kindness has touched us in different ways and made us believe that love and kindness still reside in this world. We thank the huge online community who have supported us by reading, liking and sharing the content on our website. Your kind comments and e-mails have meant the world to us all here at the Whispering Hope HQ. We also thank The Naked Convos for providing us with a good constructive distraction. We say thank you…. As we step into this New Year with Otito, we have no idea if our rollercoaster ride with him will be bumpier than we are used to. What we hope for is that however high or low it goes, it should be smooth. We know we’re not alone and trust in your presence directly or indirectly in […]

An Ode for Otito as he turns 4…Dedicated to every one who has ever supported us.Thank you!

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This story began here last week. By morning after an exhausting night battling with my emotions, controlling my temper, crying, breathing… I felt calmer. Later that day, my son was transferred back to the parent hospital to my excitement. They thought he was now safe for the trip. I did not think he was any different from how he was the previous night though. He had been observed overnight and all was fine. We got to the parent hospital later that day. Sadly, no sooner had I arrived the main hospital, than another battle erupted about whether or not to restart a particular medication. Before I could say Jack, the doctor smacked in my face the fact that if I wanted my way, I had to append my signature in my son’s notes to show that it was my idea to go against their advice. He had not even given me any advice regarding this medication. So how can I be going against an advice that I had not yet received? I told him to explain this advice and he did. He said he had assumed I knew already. After a thorough explanation I was not only convinced about the plan of action but fully in support of my child remaining on the medication in question. It appeared to me that the hospital we got discharged from had something to do with this alien attitude towards my simple questions. I could not help but feel that somehow they had fed this back to his hospital. In all the years I had used this hospital I had never been asked to sign anything. I had been allowed to disagree, voice my opinions and concerns, ask questions and I had listened for answers which in most cases were satisfactory. I was used to being given thorough explanations about the plans of actions being made for my son before they were executed. During these explanations they accommodated my questions and clarified all my concerns. I would not  have understood my son’s illness as much as I did if not for the understanding and patient way things had been explained to me over the years by the same doctors. It really was a shock to me that this behaviour sprang up from out of blue after being transferred back from the hospital that day. It was too much of a coincidence. I appreciate that it is both very difficult to listen and to be listened to when one communicates too emotionally. However, being the professionals, I believe they should have been trained on crisis management. It sometimes feels like parents risk being tagged by some of them as crazy as soon as their ideas about treating their kids are at cross purposes with those of these professionals. It feels like parents are not allowed to be angry, upset or frustrated. Like they are not human beings expressing their feelings. It feels sometimes like opposing opinions held by parents become a recipe for their psychoanalysis by some healthcare professionals. This I think is not only unfair but unnecessary. Many parents feel like they have to assume a demeanour of coolness, put up an act of calmness for this reason. Deep down, parents are sometimes not in agreement but for fear of being over-analysed by these professionals, they practice this nicely and expertly until it becomes second nature. Soon enough despite constant mental rehearsal, the shroud of coolness slips and their true feelings erupt. This does not make the parent crazy, it just makes them angry, frustrated, tired- but mostly human. We see these feelings been accommodated from people -everyone else, and they are seen as normal forms of expression. Many are even proverbially allowed five minutes of madness but not parents with sick children. One will feel that having the added stress of caring for a chronically ill child will earn a parent even an extra minute of madness but rather it removes any such allowance. As a parent or carer, you can’t help but feel discriminated against every time you express those same feelings. How can a question about the safety of your child be the bone of contention when the issue at hand is your simple inability to accept a treatment plan for your child? How do you go from not wanting something for your child to endangering them just because you dare to express your disagreement? What happened to making parents see sense? Where did the word crisis management disappear to? What happened to finding ways to calm the parent down? Perhaps discussing such issues later could be thought of as a solution? Just so people know parents experience feelings of entrapment because they have disabled children and it’s totally unfair. In my case I had to have a chat with the member of staff to express these feelings and luckily got listened to and understood. I pointed out that parents are mostly misunderstood. I feel this misunderstanding is because most of the healthcare professionals are not in touch with our reality. It’s quite hard for human beings to empathize with a situation they know nothing about in terms of experience. Unfortunately as much as healthcare professionals feel that they deal with sick children on a daily basis, such proximity is not synonymous with experiencing dealing with the same sick children as their parent or carer. The stresses we all go through as parents and carers on a daily basis, the emotions we confront, the strengths we have to access within ourselves to keep all together, the highs and lows are just a few of the things we deal with to steer our family ship and keep things on track. These are not what these healthcare professionals have to deal with in their own lives. Our children will always be a job to them while most of what constitutes their job… is our life. However in the end we all- parents, carers, healthcare professionals, staff and so on, should have the interests […]

Hospital life: Is there a gag order on parents? PART 2

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“You may not be aware that some of the doctors and nurses return home to their own disabled children”. That was what the staff I spoke to told me at the end of what was a long venting speech from me. The subject was about the frustrating weekend the other health professionals providing care for my son had left me with. Luckily for me this nurse provided a listening ear. As he said those words, they hit me like a ton of bricks and they sunk right into what I like to think of as my understanding. It had been a rather long weekend. It was just Sunday morning but it felt like there had been six days in that weekend. My son had developed a new complication which meant the solution lay beyond our current hospital. Salvation awaited him in another hospital within town and in no time we were on our way to obtain it. We arrived late that night and by morning the necessary investigations were carried out. In less than a few hours, the new hospital had delivered on its promise and saved my son from deteriorating any further. I was happy but soon, I began to get restless, irritable and very protective of my son as it appeared that the hospital had no discharge plan for him. They only seemed to want things done their own way. This was a different hospital with totally alien structures to me. It was not like anything I was used to in the hospital I came from. I felt like I was surrounded by highly opinionated doctors who were more interested in reminding me that they were in charge rather than listening to my concerns. My son was too delicate for any trial and error. Moreover, if all was completed, and they had delivered as promised, I wondered why we were not on our way back! My frustrations rioted within me to the point of chaos. I could not bear it anymore and just had to be heard. I asked them to discharge my son immediately. They tried without success to convince me that he had to be observed as stable before releasing him back to the hospital where we was transferred from. As long as I was not getting what I wanted, I was getting more frustrated and feeling that they were not listening to me. It was so exhausting. I was making no progress. In no time, I started to cry. The tears were anything but calming. I felt even more frustrated and helpless. Well in the end, after all, I had to stay. The staff did not budge. They cited his safety as the main reason for their decision to keep him in. If that was supposed to calm me down it was the wrong move. It rather made me more upset. Where they implying I wanted to endanger my son by requesting he be transferred back to our original hospital? It was ridiculous. They sounded like they loved him more than I did. Suddenly I felt like they were trying to take over, my role as his mom. I was the one meant to protect him, to keep him safe… Not them! To be continued… Thanks for reading. Photo credit: Pixabay You may also like other write ups like these.They make up the series I fondly call The Hospital life

Hospital life: Is there a gag order on parents? PART 1

Walking out of my room today I had a lot on my mind but try as I may, I just could not settle. It was like all my racing thoughts wanted me to think them all at once! It was the craziest feeling…my thoughts all wanting to be thought about at the exact same time. My heart raced, I blinked too many times. On the outside, I was really cool as a cucumber but inside I was anything but cool…I felt mad! A lot had been happening in my life and the last few hours saw me reaching the end of my tether. I had so much on my mind to the extent that I could not even complete one thought before another sprung up, crushing whatever was initially on my mind. I tried to refocus on the new thought but then another sprang up, then another and yet another…. I found myself going down the lift, still standing tall when in reality I was about to be crushed by these endless array of thoughts. My emotions were running riot. I just wanted to scream. I wanted to cry too and then laugh all at once! If I had more than one mouth then that would have made my life easier. At that point I realised that like my thoughts, I could not even choose a suitable way to express my feelings. Tip…tap… tip…tap…. I could hear the sound of my feet behind me (or so it seemed). I walked down the long corridor that led outside. I desperately needed to calm down. The thought that I was by myself  at last was very comforting. Honestly I would have messed up any attempt to speak to anyone the way I was feeling. I focused on the sound of my feet…. Tip… tap… tip… tap…. Then the giant sliding doors flung open on my approach. That now- beginning- to- be- relaxing sound was drowned out by the sound of rain hitting the hard ground of the streets. I stood under the canopy at the entrance and let myself watch the rain as it fell. I looked up and the sky was grey– very grey. It looked even greyer today. I followed the rain with my eyes and began to see everywhere it landed…. It landed on cars that in turn splashed the puddles on people as the cars swished by on the street. It landed on a woman I remember her because she wore a white jacket, grey frilly skirt and very high heels (I wondered if she would not have been better off indoors as those shoes were definitely not safe in the rain). I smiled as she jumped to avoid the splash from the tyres in vain. It was such a funny sight. I just smiled. That was my first smile that day… Pitter…patter…pitter…patter…. The raindrops made a cacophony of sorts as it hit different surfaces. The streets, the rooftops , cars, people… in fact everywhere! The strong wind added character to the rain. Wooooooh…woooooh…. The wind seemed to scream fiercely. It blew up the rain cover as a mum pushed her toddler in a buggy. The little tot screamed as some drops splashed on her. It was a girl (or at least I thought she was with all the pinkness surrounding the otherwise cosy buggy). Next was the turn of a dog that ran by looking for shelter… then down the road. There were men in reflective vests pushing wheelie bins into a big green truck Beep….beep…. The truck blared from its stationary position as the bins were being raised into the van to empty their contents. Afterwards, another group of men were standing in raincoats and seemed to be arguing about something down the road. It just felt like they were all putting on a film show for my viewing pleasure. From where I stood, I felt well entertained. As the rain subsided I ventured in. I needed to be a part of this day. I could not resist taking in the view. Green trees, a hedge with a little fence, children behind running about happily at play. I only managed to walk down the road and decided to return. The strong smell of coffee drew me instead. I decided to follow it to the Costa shop where I relaxed and savoured a cup. Right there when I sat down to have my coffee, I realised that not once had I even remembered to focus on the thoughts that forced me out of the building in the first place. So I decided there and then to take at least a walk at the height of my emotion laden day. The fresh air and outdoors can have enough distraction in them to keep you calm and possibly a bit more settled. Have you discovered any other way to keep yourself more distracted on a stressful day? Please leave a comment below to tell us all about it. Thank you for reading You may also find more stories like this here Photo credit: Pixabay

How to stay calm on a stressful day

I first heard about the term central line when my son was a baby. Born early and with his failing health, he needed lots of fluids (drips) and sometimes blood to be delivered through his tiny little veins. At other times, he needed blood tests. This meant more pricking and prodding. He cried and wailed a lot when the need to either take or give him fluids increased. By the first 6 months of his life he had so many scars on his hands, feet and even his head. That was when I got told that he needed a central line. My first thoughts were that he was going to be given a drink in the centre of his body. I consented to the procedure without batting an eyelid. All I could think of was how to lessen his suffering. It was carried out under general anaesthetic and it certainly improved his quality of life especially from a trauma point of view. Well fast forward many years later, my son has had so many central lines done at different times. We have mostly had to remove them due to infection rather than age. One of such infections was nearly fatal. In our case, the central lines have become a permanent fixture because his medical needs are way higher than we all wish. He still needs fluids and samples collected from him on a fairly regular basis. For a family new to the idea of having a central line, it will be useful to ask as many questions as possible before, during and after the process. Here are some questions I got answers to which you may find useful. Remember that these answers are based on my understanding of what the health professionals handling my son’s care have advised. In case you notice any contrary advice, kindly seek clarification with your child’s medical team in the first instance and always follow their advice. This is not a medical write up and should be used only as a guide to  give you an idea of the whole central line shenanigan … So please, now that we have cleared that up and without any further ado, here they are! What is the central line? It is a tube made of soft plastic material. The tube is placed in the child’s chest until the end of the tube inside the child’s body is sitting close to the heart. Why does my child need a central line? From what I was told, it sits in a big vein close to the heart and makes life a lot easier for the child and medical practitioners in terms of giving or collecting fluids, blood, feeds and for carrying out necessary intervention as the need arises. It is also useful for collecting blood samples for tests. It is used for giving medicines that will otherwise be injected thereby reducing the direct trauma to the child. This is because only the tube will be used for access rather than pricking the child with needles. How long does it last? It depends on the type of central line you are given. At one point our son had a port-a-cath. It can last up to one year- sometimes more. Other central lines like Hickman lines and Groshong lines have their different life-spans so don’t forget to find out. Can my child swim? Once again it depends on the type you have. For a port-a-cath (like the one we have), the device sits under the skin. When in use it is accessed with a needle from outside the skin and stuck down with tape. During access it will not be safe to swim with. Once de-accessed, your child can swim because there will be nothing outside the skin. If it is a Hickman or Groshong line, you will have to check the suitability for swimming with your child’s doctor. How will the central line be inserted? It is usually done under general anaesthetic. As the child sleeps, the line is inserted and secured. The child will not feel it. The child may be sore for a few days afterwards. Like with any operation there are risks of infection, scarring, bleeding etc but all these will be properly discussed with you before you consent to the procedure. What happens to the skin around the central line? The skin will be regularly cared for. Some children (like my son) may find the tape securing the line to the skin irritating. Irritation can include soreness, itchiness, rashes and oozing. Report this as soon as you notice to the doctors and nurses caring for your child. A skin rescue protocol can be devised by the practitioners looking after your child to protect the skin. Aqueous Creams, steroid creams and other ointments can be used to soothe the skin regularly. In general, central lines are medical devices that should not be taken lightly. You have to monitor your child. Make sure they do not get broken. An emergency kit should be provided in case this happens. You must ask for one before your child is discharged. Your doctor will explain fully what you have to do if such an emergency arises with the line. You will be given details about who to call and where to go in order to sort out your child’s device. Proper hygiene is also required when handling central lines to avoid infection. You can check out the GOSH and Macmillian websites for more information. They use these lines regularly and have more resources that you may find useful. What are your experiences with them, good or bad? For those new to central lines, ask away and one of us here will point you in the right direction. Thank you for reading. Photo credit: Pixabay You may also like other write ups like these.They make up the series I fondly call The Hospital life

Hospital Life : When your child needs a Central line…

Honestly, this topic was written today after an encounter I had today in the parents’ kitchen. If your child has ever been admitted in a hospital you will notice that there exists a hot spot within each ward- the parents’ kitchen. It is the one place where all the parents meet. It is like a meeting place. All in the name of needing a well deserved cup of tea or biscuit, parents randomly escape into this place. It is called a kitchen not for the same reason you call the one in your home as no form of real cooking actually takes place within it. It is just a kitchen because it warehouses cups, plates and various cutlery to aid parents’ feeding. You find a kettle situated within it as well as tubs for tea, coffee and sugar. Some hospitals have a sink and even sofa for relaxation. It can be a place to relax away from the ward. Relationships are struck between parents over cups of coffee. Ideas are exchanged. Some parent come in also to show off their excellent parenting skills. Some come to express their frustrations while others come to listen. The ears they provide may be all another stressed out parent finds comforting. For me, I find it to be very magical. I have received lots of good advice from parents in the kitchen. It is one of the places I dutifully locate as soon as my son is admitted into the hospital. You see, it is not a beehive of activities all the time. Sometimes, it can be deserted. The level of pressure and care required by kids vary at different times impacting inversely on the number and mood of the parents you find there. When children are very sick and dire, parents tend to sit beside their kids and appear to zap in and out of the room hurriedly. However, as children begin to stabilize and parents start to feel less tense, they begin to realise the boredom of being in the hospital. As a result, they start to be attracted to the parents’ kitchen where they then mingle with other parents. As much as parents converge here at different times, it can be reassuring to meet parents who have tales to share about their children. Some parents share very personal stories that strengthen and reassure others at various stages of their own journey. However, this is not always the case. Sometimes, the information shared can be very alarming. New parents and parents with newly diagnosed children are usually the most alarmed. As they struggle to deal with their children’s diagnosis and worry about what lies ahead, information shared by other parents can be anything but comforting. The stories can be horrifying and can leave them wondering about if these things they hear about will equally and inevitably befall their children. This is quite a normal worry for everyone who hears an alarming tale for the first time. Try not to worry too much about this. Remember that some stories are told to relieve the teller’s frustration about the issue being discussed. It may not be totally factual, it may be exaggerated, it may even be true but will by no means replace what your own health professional has advised. We all tend to carry out an unconscious mental comparison when a child is being discussed by their parent in the parents’ kitchen (or wherever we encounter them)There is no use comparing your child with the child being discussed as you listen. every child is different. The child being discussed may have a totally different illness and so there automatically becomes no basis for comparison. The illness may be the same but because your child is of a different age and unique in his/her own way, there also is no reason to spend valuable time working yourself up by engaging in this unconscious comparison of sorts. New parents who hear these stories should try not to worry too much about the future prospect of the stories they hear. Most of the parents in question have had enough time to deal with their children’s illnesses and so worrying about your capability and suitability as a parent will be unfair to you because you have not have as much time to deal with the meaning and implication of the diagnosis on your own. As much as advice is good and information is key to surviving the diagnosis, not all knowledge initially empowers. Sometimes knowledge can weigh you down when there is information overload. For this reason, I agree with the saying that less is more! Accepting little bits of information at a time can help preserve  your sanity all through the process of coping. So stay strong and stay in control. Thank you for reading! You may also like similar posts in this series Photo credit: Pixabay

Hospital Life : Worried about what other parents say

Oh dear! What a day. I honestly did not want to write a word today because I have had one of those days. But who doesn’t? So in my usual practice what you preach kind of way, I decided to soldier on, pull myself up and drop a line. I had series of meetings with different doctors today regarding the best course of action to move my son’s treatment forward. Honestly I felt like all my pleas to go in a different direction were just falling on deaf ears. I guess it is also a dilemma for the doctors too. At the end of the day they also wanted what was best for my boy. It’s just that I was not seeing any sense in their argument. Fred has suffered with acute and chronic Pancreatitis for a few months now. In fact that was the primary reason for this admission. Unfortunately, in the mean time he bagged some other complications along the way (you don’t want to know the details of that!) Pancreatitis is an excruciatingly painful condition that attacks the pancreas in the gut. In fact I met a lady who refused to discuss the subject simply because she had suffered with it for 2 weeks previously. She was so worried that by talking about her experience she would jinx her life and re-invite the pancreatitis into her system. She scarily likened it to a constant labour type pain. Panky (as I like to refer to the horrid disease) struck my son last year. He was in a lot of pain all the time. Unfortunately being a non-verbal child meant that there was really no way for him to clearly communicate this to us. For my son, being non-verbal meant an inability to communicate with words which led to frustration and ultimately crying. The bad news about cry-communication was that there was no way of telling what each cry sequence represented. For example I don’t want more food, cry. I want to go out, cry. I want the TV channel changed, cry. I have a dirty nappy, cry and I really need to be changed, cry. We had to always guess what he wanted. It was an elimination process until we could isolate and narrow down his needs. At the time, he cried constantly. So we took him into hospital and he had many tests. The results did not indicate Panky’s presence. So we just honestly put it down to an attention seeking behaviour. His school thought the same too. I decided to ignore the constant crying but unfortunately things got to a height when he cried non-stop for 2 straight days. Something was definitely not right. By the time I took him to the hospital, he was in excruciating pain at which point the diagnosis was made. Well fast forward 6 months later and we are still here waiting for the Panky’s departure! (it had definitely overstayed it’s welcome). We are not only dealing with Panky but also all the friends it has dragged in without even any notice (by this i mean the various complications as a result of it). At one point, he was in so much pain that he had to be on very strong pain killers to snuff out the pain. The problem was that he was nearly snuffed out alongside. As soon as the medicines in question were administered, he slept off instantly (and for hours too) waking up in pain for which he got given more pain relief (and obviously going right back to the sleep from which he had just finally arisen). Although we wanted him pain free, we lost our son to an endless marathon cycle of sleep, groggy awakenings and painful screams. We also felt helpless as parents. It was so sad to watch especially as in no time, he seemed to be a bit resistant to the medicines. There was also the real fear that all the concussion of painkillers could strike with horrendous side effects. The doctors (in their infinite wisdom) at the height of the pain decided to bypass feeding him orally into his stomach. They fed him an intravenous (IV) nutrition called TPN. The pain did not disappear immediately. It took about 2 months of not feeding him orally (into his stomach) to relegate Panky to the background. He was then weaned off the painkillers as his pain subsided. The IV feed idea has been God send because although Panky is still in the picture, not feeding into his stomach has meant that we have seen less of the patient (that has defined my son since he was born) and more of the boy- my little boy. That was all just to give you an idea of how the past two weeks of near pain disappearance has felt for the whole family including all the staff here. We have watched him play, scream happily, hum his songs and become a little mister full of character (at one point waking the whole ward up at 2am with his sing-songs!). He has been the best he has been since he was born. I never knew he could glow as much as he has done. It has been a pleasure to behold. However, amidst all the joy, the presence of Panky was never forgotten. It loomed in the background reminding us of its existence by sending sporadic pangs of pain every now and again. Unfortunately, the time for the IV TPN feed seems to have come to an end. The doctors in their numbers  have come in today to tell me (in not so many words) that we have to restart his oral feeds again. Now, we all know that will be equal to inviting Panky to resume its attack on my son! I can just see it accepting that invitation with all pleasure and leaving us all helpless. But they insist that it is a chance we have to take. He cannot survive long term on the IV TPN feeds. […]

Hospital life – Real effects of Pancreatitis (Panky) on our son

There is one frustration I face daily as a carer. It is the feeling of a sense of loss. It is a loss like no other. Interestingly, this feeling is quite common amongst many carers.  Many carers do not even realise that some of the anger  they direct towards their caring role is as a result of their feeling of loss. Many times, caring is done fully by the caregiver-usually a parent or guardian. In an instant, the needs of the child take precedence over the carers’s needs as a person. Carers give up hobbies, careers, social ties and most of what gives them substance. This in my opinion leads to what I like to think of as self loss. The self loss creeps in slowly and inevitably. As more demands are placed on the carer, their own needs begin to pale in significance. With good reason, the child’s needs take centre stage. As parents or guardians in the first instance who better to assume the role of complete and absolute responsibility for meeting their needs? When your child or loved one is sick for a short time, this is not a problem. In no time, the child becomes well and things  return back to normal. For some other carers unfortunately, things never return to normal. The chaos becomes the new normal, they become forced to accept the new normal and adjust their lifestyles and everything to suit looking after their child. Initially, it does not seem like too much of an ask from the carer’s emotions and psychological well-being. However, as time goes on, the cracks begin to become apparent. The cracks form emotionally and psychologically and gradually assume their existence in the carer by becoming deeply rooted as a feeling of loss. The existence of these feelings of loss though deeply impressed on carers are sadly not only normal but very common amongst carers. The only difference being their time and degree of occurrence. are very normal. My question today is this – is it possible to avoid these feelings? Perhaps care in a better way to make the carer rocksolid against these feelings? I fear the answer is no. These feelings come to everyone in this position but what we can do as carers is control the  extent to which these feelings affect us. How?  By managing the extent to which we let these feelings ruffle the feathers of our existence. It is okay to feel frustrated about not being able to do the things you really feel deprived of as a result of your caring role. Trust me, even the rock solid people you see around whose circumstances differ from yours will feel exactly like you if they walked in your shoes for as long as you have. What I am saying is please don’t be too hard yourself. On the flipside, fellow carers like you who seem emotionally strong do not feel that way everyday. They experience high days and low days. What we all aim for is to have more high than low days. To have more high days, we consciously look at the things that help trigger and sustain the high days and minimise our exposure to the ones that trigger the low days so that they will not inger on for as long as they currently do. When we consider things that trigger and sustain the “high days” we look at everything even the most insignificant things. I will give you an example – Azi is a parent carer who finds himself very frustrated on  some days, he discovered that he feels extremely happy at the sight of the bowl of red grapes on the table. It is not an explicable reason for happiness but it just so happens that the sight of the bowl of red grapes in a bowl on the table by the kitchen window always leaves him experiencing a feeling of elation. The sight more than the taste of those grapes makes him happy. In his minds eye, it triggers happy thoughts that take him back to his days on the family farm when he felt happiest basking in the warmth and comfort of his family. In fact, the more he asks himself why the grapes make him feel so happy, the more he realised its significance to him. Another example is John a parent carer who in his frustration and boredom found himself colouring the pages of an empty notebook. It all started out of boredom but with each stroke of his brush, he found that he began to feel elated and lost in the distraction provided by the burst of colours he created as he marked the pages. Today on very stressful days, John creates time for colouring pages. He has colouring books, painting projects and so on that help him through difficult days. As carers, people lose the ability to do the things they really wish for. However, adopting a new approach can help them to do different things for themselves. They may or may not be remunerated for it but the distraction availed them by such activities make the activity “their” own thing to do amidst the uncertainties posed by the caring role they face daily. So we technically begin to find ways to create a yearning for what surrounds us or begin to learn to wish for new things to sustain and distract us not only from our current circumstance as carers but also from our inability to live the original dream. It so happens that we tend as humans to keep chasing either what we do not or cannot have. In order to cope with an otherwise stressful caring role (where one’s well-being is absolutely more fragile than they realise), we need to find a way to distract ourselves away from our inherent human tendency to chase what we do not have. This idea can allow us to find and trap happiness even momentarily. In due course one can create lots of “moments of […]

Hospital life : The carers’ loss of self

Without play at GOSH, the hospital will be a mere brick wall filled with injections, medications procedures and ultimately “PAIN” for our children. They will otherwise be left frightened and confused about the meaning of all they have to cope with on a daily basis here at GOSH. Play helps mirror the intended reality that every person should rightfully experience especially in their childhood when the best memories that carry one through life are forged. Unfortunately, illness and disease try to snatch these away from our innocent children but the existence of play here at GOSH, means that the horribleness is reduced and at times eliminated from the lives of our children. Play achieves this by creating the ability for children to escape their present and sometimes entrapping realities. It then catapults them into an imaginative realm where they can feel safe. During play, children can calmly relax and be at peace. At GOSH this experience is guided painstakingly by the play specialists. The constant use of play to assist patients here at GOSH helps create a new type of reality for our children. It helps them forge new positive connections with the staff involved in their care. It reduces the confusion that leads to fear in a young mind regarding the incessant interruptions and interventions needed to keep them safe. Play also provides a conducive atmosphere for patients to interrelate and communicate appropriately. Oftentimes play is intended to be a distraction for our children. However in reality, it adds to the enrichment in the quality of life that our children become privileged to experience by being here. Endless tools, toys, materials etc are employed by the play specialists to excite, engage, entertain and educate them. At GOSH, there are no gimmicks the only effort required for the children to benefit from play is to simply but participate in the various activities planned and set before them consistently by these play geniuses. The fact that every play tailored and customised to suit each child makes it even more special and memorable to each participant. It creates a more personal and specific activity for each child to look forward to every time. Play has most importantly become an invaluable coping mechanism for children here at GOSH- especially for those in pain. Sometimes and unfortunately when pain re-emerges despite medication, play can become the next option for some children. The distractive nature of play can be a subtle medium for alleviating an otherwise endless cycle of suffering for some of these children. In this way, play becomes transformed into a tool of respite for these ailing ones. It can be the only reason that a child smiles, shrieks, brightens up and even gives the littlest reaction amidst a trying episode in their day’s journey here at GOSH. Play once more, provides a hopeful reassurance that the flame of life will be kept aglow in our children against all odds. For us parents and carers, we are not left out of the play experience provided at GOSH. We indirectly feed off the positive energy we witness in our children as they perform and enjoy each activity. That smile, that joy we see as the children play always makes each moment spent at GOSH more hopeful. After all their joy is our joy and all we live for. These play geniuses extend the care for our children to us (parents and carers) by carrying us along. They equally provide us with distractions and play materials. The play areas also create calming and relaxing escapes for parents and carers. All these remind us never to lose sight of the inner child within despite our individual circumstances. In the end, we too, like our children find that if we can keep playing we will not be held down but propelled by our challenges. So yes! Play does matter to us all and we are blessed to be surrounded by one of the best play teams in the world! THIS ARTICLE IS SPECIALLY DEDICATED TO THE PLAY TEAMS ON THE WARDS, THE HOSPITAL SCHOOL & ACTIVITY CENTRE AT GREAT ORMOND STREET HOSPITAL FOR THE GREAT WORK THEY DO DAILY. Thank you for reading Photo credit: Pixabay People who read this article enjoyed many others in the series.

Importance of play in a hospital- The Great Ormond Street Hospital (GOSH) case

In this our era you will agree that compared to the previous generation, there has been a rise in the number of working class women. It does not even matter whether they are educated or not. There just is an awakening in the female species in our country. As a result, many young ladies grow with a need to fulfill this desire. However, for many different reasons, this can be a reality that is either not actualised or thwarted due to marriage and having kids. Women constantly, like their mothers before them, find themselves feeling “forced” to put the family needs first. Is this really a bad thing? Is it the end of the world? Does not working nine to five or having a business mean a woman is unemployed and less of a Y2K compliant new-school woman? Let us look at a typical scenario. Dumebi is a young beautiful woman whose husband is equally young and resourceful. He earns well enough (no make that “earns exceedingly well” by all standards) and cares for the family, providing anything money can buy for their comfort and enjoyment. They live in their personal house, have two other rental duplexes in Lagos. In addition to this, they have their own house in the village. Cars, holidays and everything they need are at their disposal. She has two sons and a daughter. In fact life is good…  However, she found herself very unhappy recently. The object of her sadness being her inability to contribute equally to the family pot “financially”. Her husband although in the dark regarding her true feelings neither complained about being the sole provider nor did he even want her to lift a finger. She had graduated from a reputable university and earned herself a degree however, she felt under-utilised in her role as a full time house wife/ mum. She was so troubled by these feelings that she called her friend Stephanie one morning. Stephanie listened as she poured her heart out. She expressed strongly her feelings of helplessness to the situation as well as the fact she found herself extremely unhappy as a result of these thoughts. Stephanie probed to see if possibly some peer or family pressures may have led to Dumebi’s strong desire to gain employment and contribute to the family. It appeared not to be the case at all. It was just a personal need to feel “useful” as Dumebi described it. She had full control of the family accounts, ATM cards and her husband was accountable to her for even his own spending yet the fact that he earned all the money bothered her. As usual, talking exhaustively helped Dumebi release the inner feelings of helplessness and sadness that she felt. From the scenario above, you can see that Dumebi does not even see her role in the home as “useful” simply because it is not tangibly remunerated. This situation is a popular one mainly among women. There seems to be a growing need to assume an earning role. I will say that as part of a couple myself, communication is key. It seems a bit sad that Dumebi’s husband was very oblivious of the unhappiness lurking behind her smiles daily. The fact that she did not feel confident enough that he would understand her feelings also says something about the communication level in their relationship. However, by not telling him, she was not giving him a chance to be aware of her feelings. She simply assumed that he would not understand her need for usefulness. Every human being needs to feel “occupied”. The word occupation is derived from the root word occupy Merriam-Webster online dictionary defines occupy as a term that means “to fill or use ( an amount of time)”. While the same dictionary defines occupation as “(1) the work that a person does; a job or profession, (2) An activity that a person spends time doing” among other definitions. Just because an activity is not paid for does not make it less of an “occupation”. It takes up one’s time and the person expends effort and at times intangible resources like time to accomplish such an activity successfully. The problem Dumebi has is that her role as mum and wife in the family seems irrelevant simply because she is not being paid a salary. She needs a salary which she can physically see and contribute to the family financial pot to satisfy her “usefulness” criteria. However, what she fails to see is that she is performing a role that is invaluable and necessary for the smooth running of the home. In her role, she sees to the day to day care that the children require. She is available to give adequate attention to the children. Provide a warm hub for every member of the family to return to. She is in charge of housekeeping and basically turning the otherwise brick walled house into a homely haven. Her children in return are well behaved and mannered, her husband is loving and she creates a secure stress relieving home for him. In reality, her role is even more difficult than her husband’s role. She does not go on break or leave like he does with his work. For even when the family took vacations, women like her remain on full duty, ensuring the travel plans, packing, shopping, hotel reservations and all the endless requirements are met. If you find yourself, a loved one or even your wife experiencing these feelings, encourage her to hang in there and try to reappraise her feelings about her role as mum and wife. It is a necessary and praiseworthy sacrifice whose remuneration is not quantifiable. In the case of Dumebi in our above scenario, she was quite fortunate that her husband could meet all their needs, care for and love her totally without dropping any hints of frustration or pressure whatsoever on her. For some of my other women who are not so lucky, they joggle the pressures of earning a living with […]

Family matters: Does staying at home with the kids make you jobless?

The beauty of a precarious and tumultuous stage in life is that it becomes the time when all the lessons life intends to teach are actually learnt. It is the time when you are down and out. It is the time you finally begin to “pay attention”. The only thing left to do apart from wallow in self-pity is to start to use all our self-will to pull us out of the bad situation we find ourselves in. I personally have found that the only way for me to make any sense of my own life is to see life through everything else around me. Feed off new energies- positive energies. Since life has decided to keep pinning me down I have decided to keep rising up. I can now finally see. I used to live a very fast paced life. At the break of every dawn, it always felt like a whistle was blown. It was a rush to prepare to start my day, a rush out of the door into the car hoping to bit the traffic (which was silly now I think about it because I never managed to!). I got to work, rushed to hit all my targets, rushed my break, rushed to close in order to get home early enough. I was always so knackered at the end of the day. Honestly, I even rushed through sex at night with the hubby just to get me some sleep and start the whole cycle again. It was like I became the hamster in the cage. All I did was rush, rush, rush. It gave me a buzz. I even seemed to enjoy moaning about how stressful my life was because I honestly made no effort to slow down. Well, as soon as life started gradually to pin me down, the first emotions I felt were not relief from rushing but grief. I complained about my life until that point but the minute its course was set to change, I fought it. I tried to combine my work with caring for my son. I kept telling myself I could do it. It was hard to accept the reality that my son was not going to be safe in any regular crèche. All I could see was everything I could not have. Everything I was missing by being a carer. Everything I ever really wanted was slipping away- and very fast. With each passing day as my son’s health grew direr, I began to confront the prospect of giving up my job. It was emotionally strangulating- until I began to pay attention. You see, the secret of survival is to stop looking for what you want. Especially when you know that you cannot have what you really want. Stop searching. It’s like when you look too hard for your keys, you never find them. How about when you try too hard to remember a name or event, you never remember- until you let go. As you tilt your attention completely away from the puzzle of the lost key or forgotten name, suddenly, you will remember. Amidst your new quest, it slips right back into your consciousness when you least expect it to in a kind of eureka fashion. At my lowest moment, I decided to stop trying too hard to be who I wanted to be but to embrace who I had suddenly become. It was hard to find anything to do with all the time I spent beside my son both at home and in hospital. There was so much time. Don’t get me wrong, I was very busy in reality as a carer- I was doing feeds, changing nappies, giving medicines, nursing my son back to health and so on. However, I felt idle inside as a person. Deep within, I felt like I was wasting away. I remember thinking about if this was now going to be me? After all the years in university? All the years building my career? All my dreams? It was weighing me down way more than all the physical exertion of caring for Fred.The physical aspects of caring became my only means of escape from my crumbling reality– all because I was not paying attention. I began one day to notice during one of my walks one spring morning that a small leaf had grown on a tree. I suddenly discovered a trail of slugs too along the path- that made me smile each time I passed by. I found myself looking forward to seeing as much of them as the weather could permit. I noticed a cat along another path every morning and found myself wondering about it on days when it failed to appear. For the first time, I began to SEE my surroundings. I had all the time in the world now. Suddenly, a new world seemed to open up to me. I began to see the rips in shirts and tops around the house. I opened my needlework set for the first time in ages. . I redid my husband’s trousers meant for the bin and converted it into shorts and in no time, I acquired a sewing machine. That gadget can now testify to completing many a project with me. I went from doing up my interiors to redecorating for friends who have to date given me endless referrals. I used to love colouring and drawing as a child. Hmmmm, I had an idea to revisit that as well. I changed my walk direction the next morning towards the book store and bought a simple colouring set to get me started- nothing fancy. In no time, I was colouring so much and getting a real buzz. Before long, I was busy borrowing books from the library. I suddenly had time to pursue other aspects of my life that otherwise lay idle. I suddenly stopped only having ideas but also bringing them to life. It was an empowering feeling. Surely the boost my life needed- like […]

Wipe your eyes and pay attention

I promised last time to tell you all about the drastic step I took to help me finally decide whether or not to accept the gastrostomy device. Thank you for following the story right from the first part. Prior to the gastrostomy tube, my boy had a nasogastric tube fitted (It is that tube that goes from your nose into your stomach). It was a traumatic device to even insert. He seemed to pull it out nearly every hour. I also had to go back to the hospital every now and then to have it reinserted. It got to a point where I got trained to insert it at home. As a mum, that was a heartbreaking and traumatising thing to have to do to my child. Having a gastrostomy meant that this activity will become history in our home. Despite all the reasons in favour of accepting the gastrostomy device for my son I still did not want to consent to it. I even told you all about the feelings of worry I secretly nursed. I talked myself out of them one by one but still, I was hesitant. What was holding me back? I was so unsettled. It was fear! I knew I hated admitting it but it was simply fear! The fears were many… The fear that perhaps they were being too hasty… The feeling that it did not feel right that my son was to be fed through a hole in his stomach… The fear that he might react badly to having a foreign device sitting in his body. I was drowning in the sea of fear mixed with worry. “Perhaps he needed more time”, i thought. Having spoken with many parents, I knew it was not a wrong decision to make…but it was so hard to sign!… They had sworn by it. They testified to the improvement in the quality of life being experienced by their children post gastrostomy. They talked about how much easier it was. “How can it be easier to put a hole in a child’s stomach?”, I thought, “what if it got infected?”, I wondered, “it is a hole after all”. I could feel myself getting traumatised by the idea of the hole in the stomach. “Surely the nasogastric tube was better! No surgery was required and I could do it – albeit amidst horrible screams as many times as required”. One fateful evening while Fred was admitted into hospital I decided to walk in the shoes for that evening. It was just a thought… a scary one. (The fact that I considered it scary bothered me because it was something my son had to endure nearly on a daily basis, and worse still it dawned on me in that moment that although the gastrostomy could save him  from enduring all the pain, I was the only one preventing this respite). The resolve became stronger…I had to walk in his shoes! I called on the nurses and looking intently at them (secretly hoping that my request will not sound stupid enough to be discarded immediately), I requested for the nasogastric tube be inserted in my nose! I could see the look of pity in the eyes of the nurse-in-charge as she considered my request. She looked at me knowingly like she understood my dilemma. Then smiled at me and granted my request. As she walked away, she gave me a pat on the back and told me it was going to be arranged. “Get ready for it in an hour”, she said, “I wish you all the best of luck, because you’re going to need it!”. Surely it was not going to be a herculean task after all my son went through it every single day. I felt the nurse was being a bit dramatic. “Luck? , grrrrrrrr!”, I blew a raspberry. I began to feel quite excited as the hour approached. The prospect of experiencing what my son was going through made me happy because then at least I could now know for sure what all the fuss was about having a gastrostomy instead of the non-operation requiring nasogastric tube which i could insert for him as many times as he needed it. Finally the time arrived and I sat happily in the treatment room. About five nurses accompanied the nurse in charge. I wondered what all of them come from for. They all looked intimidating as the approached. Wearing sullen looks that seemed to say: are you sure you know what you’re about to do? I ignored their looks and focussed on the task at hand. I was told that all the nurses were there to restrain during me the process. “Fair enough”, I thought. I shrugged my shoulders in a away that meant “well, you have to do what you have to do!”. Then it began… The nurses held me, each nurse holding a limb. The last one held my head down. And the nurse in charge announced that she was starting. She brought out a massive tube. In that moment, it dawned on me that she had to bring a tube that was for adults. Not my son’s little tube. I bet it looked to me as it would have looked to my son. I was in horror as she approached with this tube looking at her each time. I imagined this was my son’s horror too every time I held him down and came at him with that tube. Then suddenly she started to inserted you down my right nose. It was okay to start with “that’s easy”, I thought. Suddenly it hit me right behind my nostril before my throat. I felt like I was going to die. I couldn’t breathe. I began to struggle and kick. Then the restrainers took over. I wanted to run away but they held me down as per my instruction (I remembered telling them not to let me go at any point no matter how I struggled because I […]

Hospital life : Does my child need a device? “Our gastrostomy case” Part 3

Last time, I told you about how difficult it was for me to consent to a gastrostomy operation for my son. He had been having difficulty feeding and things reached a climax with him becoming averse to all things food. It was clear that the way for him to proceed was to get help with his feeding. The doctors wanted him to have a gastrostomy but I was becoming more hesitant by the day. If you click here you will read all about it to help you catch up with the rest of us. Thanks for coming back this week. As promised, I feel that I am not alone in the world of indecision. Unfortunately, I could not help the feelings deep within which were stopping me from simply signing the forms for him to have the operation. Here are some of the things that bothered me : The Social aspect of having the device. I cannot help my feelings about the social aspect of having a gastrostomy or any other device for that matter. Sadly and a bit embarrassingly, this factor has more to do with me. You see, without wanting to be righteous, I was worried about how my son will come to be viewed by friends and family. All the people telling me that it did not matter had no children with gastrostomy devices or any issues whatsoever so how on earth could they understand my embarrassment. If you feel this way, please do not be too hard on yourself. You are not wicked or selfish. You are just simply human. Trust me, no one who signed up for parenthood factored in this scenario. So it is ok to feel worried about it. The truth in reality is that it really does not matter. People do not really care (or may be I should say people are indifferent) about it. Let the focus tilt back to your child. Try not to be distracted from the child. I find this re-focussing to be helpful. It helps us keep in mind what really matters when these kinds of decisions are made. How will my child blend in? This was also a worry for me. How my son will blend in with other children. Will he be treated differently? Will it be pulled at by the other kids at school? Will he be bullied? All these thoughts are normal. After all you are the parent and we all know how it is to have anything different at school and be picked on by others. The good news about the gastrostomy or any device is that it is medical and people tend to be very sympathetic and helpful about these things in reality. The teachers will always be around to look after your child when the time comes. Once again, staying focused on the outcome for your child will be the guiding and refocusing tool for your emotions. How are other children coping with the device? This was a question that kept plaguing me. I was very curious about the future outcomes for real children. I know you might wonder what that means. You see, every time doctors tell me about a desirable course of action for my son I can’t help but feel that those are the textbook kids in thick medical textbooks. I personally feel more reassured when I can see or hear from real people living out those courses of action. For example those living with the device. While it is not always possible to meet other parents and children, I avail myself of this opportunity where possible. I immediately started asking other parents and reading online forums which were filled with real feedback from parents. Everyone seemed to say their children’s outcomes improved drastically after having the device fitted. It was reassuring to know that the device delivered on its promise. Was it really easier to use? You know how they say if it is too good to be true… then maybe it is? Well, this was my new fear. It was so emotionally exhausting. It just felt like each time I conquered one fear, a new one came up. This was easy to solve. I simply started interviewing parents. One lovely thing about parents with sick children is how helpful they tend to be. Many parents I contacted shared their experiences with me. I was looking for information about how they as parents felt in terms of the difficulty or ease of use of the device. I found consistent and encouraging information in favour of accepting this device. Other general worries and questions. My last thing to do was to ask as many questions as possible before arriving at my decision. This is one of the best things you can do to put your mind at rest. The doctors and health professionals were always on hand to answer my questions. So you see, having worries about accepting a device for your child is not new and you are not alone. You need not worry alone. It may not even be a device you are worrying about accepting for your child. It may be anything else. As long as it is a decision regarding your child, it can be draining. We all worry about getting things wrong. It would be easier if parenting came with a hand book. I think the key things that work the most when you reach this type of decision dilemma for your child is Find out as much as you can about the issue. Remember that knowledge is power. Write down your questions as they arise. Ask questions wisely- make sure your questions are directed to the appropriate person on people. Don’t be too hard on yourself especially when you start to get emotional and sentimental. You are only human. Keep your focus on what is best for your child. It helps to curb your emotions regarding the issue.   After all the points I noted above, I was still unable to […]

Hospital life : Does my child need a device? “Our gastrostomy case” Part 2

When you are blessed with a child that has complex health needs, you get unknowingly initiated into the minority of people who have to make tough decisions daily. Some are easy Yes’es while others keep feeling like yes...but! Not necessarily because Yes is not the obvious answer but because Yes becomes less straightforward and branches out with various ramifications and aspects for your child. With many long term conditions, the answers are not quite clear-cut. Even the simplest answers are filled with inherent risks. For us as a family, one of the downsides of our son’s health condition is- loss of appetite. In his case, it began slowly. With time, it gradually degenerated into a complete food aversion. We knew an intervention was required to enable him get the necessary nutrition to thrive. As a result, were asked to consent to an operation to insert a gastrostomy tube to help him feed. It was meant to be a simple consent or so they thought … When push came to shove, even with the decision staring us in the face, we just could not reach it. The fact that we knew he needed some form of intervention, did not reduce the shock and anxiety we felt as a family. A gastrostomy is a feeding tube or device inserted, to help a person get the necessary nutrition for the survival. I have put that in the simplest way possible because this is by no means a medical write-up. The shock I felt as a mum that my son now needed a tube to feed with was too much to process… it horrified me. You know you see these things on the TV and never imagine that you will see it face-to-face. Let alone experience it directly with your own child needing it. I kept on feeling that perhaps if we persevered further with trying to offer him food by mouth (orally), he will start feeding. Well you see, the decision was very hard to make. I tried not to lose sight of the fact that my child’s welfare had to come first always. He needed this device to help him live.  From every indication, there was no other option. It was either we found a way to feed him or he was slowly going to dehydrate and heaven forbid the outcome. Accepting the gastrostomy was really in my son’s interest. It was certainly going to help him. I had to remind myself that accepting this device did not mean that I was giving up on my son’s ability as a little boy to feed on his own. It meant that I was giving him a helping hand. Like everyone else, the thought of giving him the best opportunity to live life to the fullest was always my driving force. Although I knew and understood this, I still felt uneasy. I was still hesitant. Perhaps it was all happening too fast. Maybe he needed more time to try. “The gastrostomy was too major a procedure to try just for feeding him”, I thought. I asked for more time to think about if this was the only option for my boy. I confronted other feelings that were holding me back. I confronted feelings that you too may be experiencing especially If you are at this point in your journey with your child. It may not even be a gastrostomy device that you are having trouble accepting. It may be any other medical device that you are being offered as a family to help your child. You may have allowed yourself to be convinced by people that these feelings that cause you to hesitate don’t matter.  While it may be true that some of these feelings pale in significance in light of the health risks your child will have to deal with (especially when it is clear that these risks will become more inherent if you turn down the device), It is not true that these feelings do not matter. If they bother you, then they matter. Next time, we will look at some of them in detail. I will tell you about the ones I faced and hope that by taking you through how I confronted and dealt with them, it will make your own decision a bit easier to make. Thank you for reading. For now, if you enjoyed reading this, you may also enjoy some other topics we have discussed in this series. Photo credit : Pixabay

Hospital life : Does my child need a device? “Our gastrostomy case” Part 1

Well as the title suggests, today, I stretched a bit too far. However, I can bet with you that is not in any way what you think. It’s not my finances, time or anything that (normal) people stretch but it was good old me that was stretched! When I say good old me, It is 100% me! Well I woke up this morning bright and early – early riser and all that (yay!) as I have become since I became a parent carer. You know the funny thing about that is that my brain tends to wake me way before the alarm clock (and unnecessarily at that because today as you know, I am in a hospital ward where that is done by the lovely nurses). Well my frustration did not reduce my need to do what I always do. I did what I have done from time immemorial against every giggle, advice or look from my disapproving parents, siblings, husband and wait for it… kids! Yes, silly kids that I once provided accommodation for (pregnancy and all that). I STRECHED! Yes you heard right… I stretched. In the mornings when I wake up I always treat myself to a satisfying stretch. Like a cat (holla to all the cat women out there !!! ) I always stretch. For all you stretch haters out there, as silly as this might sound, a stretch is the true meaning of being alive. It puts the “WAKE” into A-wake. It should be an art form because skilled stretchers like me can bend and twist into different shapes and positions. Do you know what the most prestigious part is? It is not a skill you can learn but a TA-lent (shaking my head up and down) that only a few of us are blessed with. Stretching is a bit like marmite… You can either stretch or you CAN’T! There is no room in between for fence sitters (blowing raspberries). A good stretch cannot even be rushed because after you execute a proper stretch you literally feel taller- no make that longer. In summary, a real stretch makes you ready to say “bring it on!” to your day. Well, just because I think you now have an idea about what a stretch means to me, we will continue (smiling). So I was enjoying one of my innocent stretches this morning when KRRRRrrrrrr…….. Something snapped! Next came the panic as I was hit by an excruciating pain garnished with a swallowed scream. I know others might call that scream muffled but it will not be a befitting description for the scream I just experienced. It was the type of scream where you open your mouth wide, draw the breath to scream out but at the same time, realise that your child is sleeping next to you, you do two things at the same time. Take a big blink or better still squeeze your eyes shut and Squeeze your mouth shut, letting not even as much as a sigh but swallowing very hard The next thing I felt was a ripple as goosebumps covered every inch of my body in a rippling way. I finished off the experience with very quick panting like the type we are taught in ante-natal class (I know the mums and nice dads who attended antenatal will know the panting i am talking about). I felt like the “Tom” in Tom and Jerry cartoons after yet another crash into one of Jerry’s traps with green wind escaping from my ears and eyes. I managed to hold in green wind from escaping my bottom (eeeurhh).All these happened in splits of seconds and I heard that internal scream reach deep into my soul and allowed the hot flush flow down into my tippy-toes. I automatically removed my palms from beside me and relocated them right behind my neck cupping them as my head seemed to get heavier Amidst all these, an interesting thing was happening in my head. I began hearing voices. At that point I was not sure why. It was either my nearly broken neck was affecting my brain or all my haters were haunting me. I felt like i could hear them in my head laughing hahaha… that serves you right! Well to be fair they could have gone all Awww…. bless you on the outside but I bet they would have laughed secretly at my expense. Anyway, as I bore my pain and approached the nurses station, hoping for a remedy, neck in hand, I narrated my ordeal amidst their giggles and pity, I began feeling uneasy. A sense of grief enveloped me as I listened to the ladies tell their stretch tales one by one. It was a secret sadness that I could not even bring myself to express. It had nothing to do with the pain I was still feeling. It was just because I felt lost. I had not actually managed to stretch completely before the accident. I felt shorter- Crinkled like a sheet. Squeezed like a piece of paper. Rumpled like an item of clothing desperately in need of a nice ironing to bring it to life. In fact I also was worried that I looked different- In an unstretched kind of way. Suddenly I remembered that I found my first grey hair last week. Could this be old age. Panic struck me! could this type of mishap be what i had to become accustomed to post-grey-hair and all that? So this is actually a cry for help! I need some tips on how to survive the next few unstretched days before my neck comes back to life. Cheers for reading. Photo credit: Pixabay If you enjoyed reading this, you may also like other topics in this series.

I stretched a bit too far!

Lagoon cafe is one of my favourite spots in this hospital. It is the place for buying food and drinks during our stay at this hospital. I will not lie to you that food time is one of the highlights of my day. I know people say that hospital food is rubbish and maybe it is. But one gift I am blessed with is that I am easily pleased. It may not be the best food in the world but the main thing is that I like it. As I walk down the hallway with my food bag in hand, there is not a thing in the world that can dampen my spirit. I love the food (at least most days I do). It is one of my main things. It excites me because just eating it and chewing on it releases the burst of hopefully “good” flavours into my pallet. As I swallow each mouthful, I swallow with such excitement as I see more areas of the left on the plate to devour. It’s funny how suddenly the highlight of my day has changed from say having important meetings and deals to close (from just a few years back) to counting down the time to lunch! Life is really unpredictable. You can never know what lies around the corner. Rewind my life 10 years ago and ask that little girl where she thinks she will be in 10 years time and it will certainly not be here fantasizing about food. It’s not the end of the world if you are unable to achieve what you thought was your destiny. Not everybody will be bank managers or wizkids. Someone will clean, someone will drive the bus or someone will just be jobless like me right now (well technically, not jobless jobless but office jobless – if you catch my drift.) The good news is that not all great and successful people planned to be as big as they are today. So it is not the end of the world if you are not presently living the dream, or if your life is not anywhere near a fairytale. What matters in life is not living the dream and having a fairytale life but making the best out of the circumstance you find yourself in. Let us face it, even the said people living the dream are not all as excited and happy as you might think. Happiness is a function of so much more than just material achievements. Something as unremarkable as enjoying a plate of food (especially if it is a plate of the food you crave) may just be all that takes to attain happiness however momentary. Accept your situation but work hard towards being the best you can be within the limits imposed by your circumstance. To me that is true success. Aspire for a better tomorrow but not to the extent that you stop appreciating your today. So if you find that you wanted to be a doctor but somehow life has led you to be a bus conductor, be the best bus conductor there is on earth! Conduct that vehicle like you are an authority at it, take ownership and man the bus like it was yours after all it pays your bills! It does not mean that you may not still be a doctor tomorrow. Just keep working hard and being prayerful. By doing that, you indirectly put yourself out there, the opportunity may arise for you to train as a doctor. You will see it because your head is held high. If you bow your head in despair constantly you may be busy moaning and complaining when opportunities come- thereby missing out on them. So right here right now as I am doing justice to this meal, all I can do is be grateful for all I have. I am being the best I can be and praying for the best outcome for the future. To show my seriousness at accepting my situation, I have now made friends at the lagoon cafe. So sometimes I get extra portions here and there. So hey! I have started taking that advice: I am being the best buyer of food I can be. Now before I take up more of your time, I shall let you go while I work at being the best eater of food! Thank you. Photo credit: Pixabay You may also like: Food frustration  

Hospital Life: The Lagoon Cafe…

Do you keep getting asked this question? You see, this may be the opinion and vibe you get from some quarters.  You may have always brushed this off as silly talk. Today however, we will do something different. You can engage in an out of body experience like I do sometimes. I like to call it that because it’s a state that can make you feel numb. You replay all the events in your life regarding a particular issue and sit on the side-lines watching as a spectator would. Next you review your actions and imagine it was being done to you. You ignore the reality that you were the one who was the actual actor in the movie that is your life. After that, you zoom on the issue and look closely at it again to see if you will come to the same conclusion that others have reached about you. Well, that was just to give you an illustration about the out of body experience I was particularly referring to as we all know there are different types. This one is not the witchcraft type (ha! It’s always best in my books to clarify things for the avoidance of doubt). Looking at the issue closely, I think technically some of us can really be secretive.  However, it is not for the reasons we are accused of especially when the secrecy in question to has to do with keeping quiet about achieving a mile stone, completing a task, organising an event… you know, those sorts of secrets. You see when there is a task to complete; I believe more in getting on with it than talking about it. After all action they say speaks louder than words. I have found that talking about a plan saps all the strength needed to carry it out. It seems a bit easier to just act things out. For instance if I want to redecorate my living room, I will just get busy with the project. The reason is simple, like everyone else; I am too keen to see the finished work to be wasting any second deliberating or conferring. I want to see how it will look for starters. I am always very keen from the start to remove any pressure that will be imposed on me as a result of creating expectation in people. The more ears hear, the more eyes will analyse my work and ultimately the more pressure I will feel. I am no expert in life but the best things do not start off being perfect. They go through many stages in the refining process. It’s like an artist or writer not exhibiting their work until they have totally finished creating the masterpiece. You do need various kind hearted (and sometimes mean) opinions distracting or tilting your focus. Honestly, starting a project, you may not even know what to expect the work to look like until you finish. If you are like me then you will find that you are just mostly filled with all these little bits of ideas and thoughts about how to go about things like; placing this here or painting that in a particular colour. Ideas upon ideas keep piling up in your head waiting to bubble out and be tried. You may just be quiet about things because you want to be able to make your mistakes privately and learn from them. This is the safety net that you find in the solitude of the privacy you avail yourself by being a bit hush hush… You raise your head from time to time when you need help or pointers. Sometimes talking about a plan so much inscribes it on stone and you feel a bit embarrassed about changing all or part of the plan. You risk worrying about not being taken seriously. This impedes your creativity. Skills are honed after a lot of trials and failures. Something may seem like a perfect way to execute only to begin and the path it will lead to opens up. It can be like a maze sometimes, until you actually start, you really are blind to all the potential twists and turns you are likely to encounter. Before the starting point, these twists and turns are all hazy ideas but as you begin and etch closer to various action points, their potentials become clearer and less hazy. This means some action points are subject to change where impractical. In my case, I have tried and tested this many times and it has worked. I seem to thrive better in that solitude of silence. So when you find that I have accomplished a huge deal and feel left in the dark, please do not take it personal. It was not intentionally done to cause offence. It was done to give me a sense of direction. To remove the distraction caused by scrutiny. To reduce the distraction caused by worrying about bringing disappointment if it failed. Know that of every action I have accomplished, there may have been ten others that failed but the fact that you are still unaware of them means I can keep trying without feeling that I am a joker. So today, it may be a good idea to communicate more with people who love you about why you choose to be private about certain issues. It can be annoying to feel left in the dark even when it is for a positive reason. I hope that by sharing this and knowing you are not alone in this regard and dispel the weight of criticism regarding your need for privacy. Everyone deserves to be able to keep things close to their chest if needed just as long as you also respect the privacy of others. Thank you for reading. Photo credit: Pixabay You may also enjoy some others in this  series  

Why are you always so secretive?

Eurghhhhh, a delicate subject eh? (covering my nose). Well, if we want to be honest with each other, some of the most important subjects are quite “delicate”. This one is as delicate as it is a bit disgusting. I laugh because; it is a necessary evil that we must go through at least fairly regularly. Have you ever wondered about this subject and how to deal with the ugly droppings when you are not in the comfort of your home? As some of you know, there are many of us who are stuck outside home for reasons beyond our control and have been for a while. For some people, like even my mum, they are so blessed. Their droppings are angelic, not even as little as a whiff of unpleasantness in that department. But if you are like me (bless your heart), it can be a very embarrassing and scarring experience (for the innocent people waiting to use the loo afterwards). When it’s a family loo, there will be really no qualms. The rest of the brood have to be brave and carry the cross of having me as a relative. However, when you come out of a public hospital ward toilet and someone is waiting just by the door for their turn that will be an entirely different matter requiring a redemption plan. If that person resides in the ward where you are, you will agree that there are better things to be remembered by. It is kind of inevitable really that poos (politely called ugly droppings going forward) tend to become smelly when you are away from home. I think the fact that you lose a bit of control over what you eat is the main reason. To a very large extent, the quality, quantity and texture of the droppings you produce depends a whole lot on what you eat. Suddenly you find that the desirable meals that you (or better still your gut) is used to become scarce and in some cases unavailable. Instead, the junk and odd looking tasties you can find (to stuff down you for survival) each day although less desirable become more available. They create somewhat inevitable mixes that become the bulk of the waste you will have come drop-time. Another reason for ugly droppings is that it being outside home makes it more difficult to stay hydrated. Water is the main ingredient that can help to keep things moving gut-wise.  When you are in that toilet away from home, you not only want to keep things moving, but to keep things moving freely. I can tell you for free that the more the traffic jam you experience while delivering the ugly droppings, the worse the stench you create in that room. So more water at least 2-3 litres daily will go a long way. One major setback for parents about being in the hospital is that in the hospital environment, staying hydrated is often the last thing on one’s mind. The fact that water may not be readily available makes it increasingly put off. The questions that may choke away the thought of drinking water for a parent may surround how to access water. Like “should I buy water?”, or “Is there  a water dispenser on the ward?”. Where one exists, the next question becomes, “where is it.” After that, parents also begin to worry about when they will find the time to leave their child’s side to travel to a tap to just get water to drink? As ridiculous as it may sound to someone else, water drinking is the least of our problems when our children are poorly. It feels like such a trip when you have better things bothering you during that stressful time. I find filling up bottles of water by my son’s bedside to be my perfect solution to the water problem. I either bring a water bottle in or refill juice bottles, old fizzy drink bottles. I make sure I refill each morning and the presence of those bottles is a constant reminder to me about the need for adequate hydration. You can try this too. Another good way to keep things moving the ugly droppings department is to keep your fruits, vegetables and fibre intake reasonably steady. We all know how that 5 fruits a day help our bowel movement. Try adding a bag of apples, strawberries, grapes etc whatever you like into your shopping trolley every time you pop out for some supplies when you are in hospital. You need to try to rest a lot too when in hospital. It is a stressful time being there so it makes sense to take care of yourself too. Rest well, so you can feel optimally ready to care for your child. Stress can also contribute to clogging up your system during drop-time. Stress can trigger haemorrhoids. So a down time every now and again will be good to keep the stress levels down. Now that things are moving and you are not constipated, the next thing is the smell. How do you get rid of it? Don’t get me wrong, having ugly droppings is not a disease, it is quite normal for them to smell. It’s all it contains that causes it. I find egg and milk to be my main culprits. I personally have tried all ways to get rid of the smell from flushing the toilet with each droplet of  poo to choosing the time of day to ease myself. I have tried first thing in the morning and last thing at night just to escape the smell and reduce the risk of being caught escaping my own dung! I worry about other parents who will be nasally scarred forever. What I have found most effective is the one method that stares us all in the face. Using a bottle of air freshener after wards! Hahahahaha…. I know it sounds ridiculous but believe me, this has improved the quality of my hospital life. Now, I don’t have to worry […]

Hospital life: “The Ugly droppings” – A loo-ey talk about how to deal with the uglies while in hospital

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Grrrr… that was the sound of my frustration! Frustration was an understated description of my feelings this lunch time. I was at the restaurant this afternoon looking for something to eat. You see, today was one of those days because I had worked up just enough appetite to earn me a “proper” lunch! I woke up at the crack of dawn very energetic and thought “Why don’t I work up a sweat? “ Well, that’s exactly what I did and hmm… It left me feeling very invigorated. A dose of endorphins to kick start my day and nothing could possibly go wrong. I had a cup of tea and a slice of bread then decided to save the rest of my hunger for lunch time. With every chore, I had a visual picture of my would-be lunch plate stamped in my mind’s eye. It   fuelled my activities to the extent that one who saw me would have thought that I had already consumed the lunch. At times it was a bit distracting, making me even hungrier than I really was. I walked majestically into the restaurant on the second floor ready to devour some food. However, to my utmost dismay nearly every plate on display did not contain my type of food. I felt deflated as once more my attempt at healthy eating seemed impossible. It was all good food – don’t get me wrong. If I must confess some of the food was even too tasty for a girl to resist without a large dose of self restraint. I just acquired a preference for vegetables to save my ever expanding tummy. This girl now had less carbs, fats and spreads.  All I could find in the restaurant were large chunks of beef, pork and yummy spaghetti heavily covered in rich Bolognese grrrr !!! The area with vegetables did not have the same beckoning allure. They looked so unappealing and I forgot to mention scanty. Worse still, there were no veggie options on the main course today. The kind of hunger mixed with exhaustion I was experiencing today after all that exercise needed something light but filling to quench it. Descending on the available options would have ended in disastrous overfeeding. The only solution was to hit the streets in search of a fibre rich, highly filling and less calorie piling option. I am not a vegetarian at all. I just find that my body breaks down vegetables better. That’s why I tend to prefer using lots of vegetables to quench my insatiable hunger. I am like a goat when it comes to food. Never satisfied and ever grazing. I cannot help but feel like the system does not promote this kind of lifestyle. Daily in the press the health experts point out the benefits of healthier food choices. It’s just a shame that after winning us over with their sensible arguments we are left underwhelmed by either their exorbitant prices or minimal presence amidst a vast array of food options. As far as I am concerned the government needs to do more to ensure the affordability as well as the availability of these healthier food choices. Chips, burgers, crisps, ice-creams, cakes and so on are so cheap and ubiquitous making them more alluring especially to a mum like me in a hospital who is not necessarily spoilt for choice. One will expect that foods that are in their natural state and requiring virtually no processing to get to the consumers will be automatically cheaper and as such beat their counterparts in price and availability. I think enough has been said to get some of us on the healthy eating wagon. More needs to be done to make such food more affordable especially in hospitals where most parents do not have the luxury of choice. Perhaps an extra subsidy on fruits and vegetables and better preservation to extend their shelf life will be a nice idea too. Perishability has always been a factor negating the availability of fresh fruits and vegetables. In the meantime, I propose an adoption of even cheaper pricing that will increase turnover while attracting buyers and ultimately reducing waste. Not everyone can ignore the allure of yummy instant meals. As a one-off indulgence they will not do me any harm. However, as a constant choice, my middle and overall weight bear the brunt of it. As for today I had a lucky escape. I certainly do not make the best food choices in the world but a bit of variety to spice up any choice I decide on will be most welcomed. Have you ever found yourself in the same dilemma? I find it easier to plan my meals when I am in the comfort of my own home. How do you keep your taste buds happy while outdoors ,in hospital or even on holiday?   Please leave a comment below so we can hear all about it.   Photo credit: Pixabay

Hospital Life – Food Frustration!!!