Monthly Archives: September 2017

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

Immersion… An interesting word for today right? Well, It has not come about by accident. That’s just in case you were wondering. It was a word that came about through feedback. A person was described as one who got thoroughly immersed in any activity they performed. It was a compliment actually. I always like to think that once in a while it is interesting to get feedback about how we come across to others. This was definitely an exciting one. Until that point in the discussion, I would have never ever thought of describing the person in question as one who enjoyed being immersed in any activity. I was wrong because right now, the more I think about it, the more I find it to be an extremely suitable description. So let’s turn to Merriam Webster my trusted side kick when it comes to defining terms. She offered me many definitions but the one that I thought was most suitable for the purpose of this discussion was the third definition. Here it comes… ….absorbing involvement…. I like that. For one to be described as having a tendency to be totally absorbed and involved in an activity must be a good thing. Right? Personally, I like not only to do things but to experience them. To do something feels more external than experiencing it in my opinion. I like to watch how things make me feel when I do them. I like to be aware of how I form my opinion about the things I do based on how they make me feel as I do them. I also like to compare my feelings over time … how am I feeling about this now compared to how I felt previously? I can hardly participate in things without deploying all my senses. This creates a lot of internal dialogue which can sometimes be distracting. Feel things from the heart don’t just be a partaker … That’s like an unspoken motto of mine. But that also comes with its baggage. You see not all activities we perform make us feel anything to start with. Especially when they are in their infancy- when we first start to do them. When we are still learning to do them, it can be difficult to feel excited about them. It’s easy to think that someone possesses a mighty  dose of absorbing involvement in an activity when they are enjoying what they are doing. This can lead to the assumption that this feeling occurs with every activity they participate in. It can even make us feel that we do not possess as much potential for being completely absorbed in the activities that we ourselves are involved in. Well, not so my friend, not so…. That absorbing involvement you witness in others is expressed mostly when people perform enjoyable activities. There are many things that can distract us from experiencing the same level of absorbing involvement that we admire in others. I like to think of them as internal and external distractions. Let’s start with the internal distraction. Do you remember how I told you earlier about how I need to experience and not just do things?  Well, that’s a classic example of a potential recipe for distraction that originates from within. I cannot count how many activities I have been robbed of because I have been too impatient to allow myself hop over the learning hurdle and into the enjoyment phase. The need to immediately enjoy and feel can be a distraction from the whole process and objective of simply participating in many activities. In fact funny enough, many of the activities I am currently admired for were those that I learnt when I was very young. I have no real recollection of what the learning phase was like or the resistance I may have put up. I was very young when I acquired those skills and what’s more the responsibility for making sure I mastered them was not mine. My parents and teachers would take full credit for those. Writing, sewing, tidying up, playing an instrument, saying my prayers, reading my bible etc. With those skills, I hear people say I have super immersive tendencies. Now that I am solely responsible for acquiring new skills to help me participate in new activities, I must confess to you that I have found myself as shamefully wanting as any one else. I cannot even learn to play the Wii with my son because I lack the patience to learn what all those buttons are for on the controller. Worse still, the functionalities keep changing with the games and I simply cannot keep up. What happened to just colouring or painting things? So you may see me doing things like that diligently and looking totally absorbed in those but don’t be fooled. I don’t enjoy or feel anything when I play the games because I cannot get myself to be patient enough to learn them. As a result, I safely stick with familiar patterns. In order to reach a point of immersion in the activities we perform, we need to find ways to remove distractions and create a focusing environment in which the so- called activities we get involved in can thrive.Not many of us are able to kill all the noise and things that tend to push and pull us as we perform various activities. This leads to an inability to be absorbed or completely involved in them. In the end, we end up avoiding or even neglecting them. This brings us nicely into the external reason for distraction which is mainly peer pressure. This distraction originates not just as a result of an internal distaste, lack of enjoyment or feeling for the activities we perform but from people whose feelings we put before ours. In trying to please them, we compromise on our personal desires regarding the activities in question. The need to yield to these external peer pressures also fuel the need for conformity. This means that many activities we will ordinarily participate in, enjoy and […]

Word of the day – Immersion

If you have been sailing through life and never failed at anything, it is difficult to appreciate the gift that failure can bring to your soul. I feel so sad. Failing again and again has bashed my self esteem. it has made me question myself. Am I really good enough? Perhaps I have been very lucky up till this point and escaped with many near misses that I have not noticed, how narrow my escapes have been. That is pretty much how I feel right now. I am so angry with myself. The more success has continued to elude me, the more frustrated I have become. I have tried everything within my power to succeed and it just feels like the more I try, the more I tumble down the slippery slope. I partook in a test that depended on how someone else other than me judged my actions. If they judged them as safe, I passed but if they determined my actions to be dangerous, however innocuous my intentions, then I failed. Every time a tentative feedback was given, I felt judged even though it was sometimes corrective.  By the time the judgement was finally passed,  I felt like an extra switch had been put off and my confidence nose- dived…dimmed one switch at a time. Why could I not see that all I had were just a litany of miscalculations? I just could not understand how I could have been so daft. It’s interesting how we view ourselves compared to how we are viewed. Sometimes, we allow ourselves trust the judgement of people around us (especially if they are external and not prejudiced) and rightly so. However, it does not stop it being very heartbreaking to sit and listen to them talk about how we actually come across. While we mustn’t spend time worrying about how others view us, we cannot totally ignore them. As they say, everyone cannot be wrong at the same time. Failure was an alien term to me until I joined the bandwagon. I really could neither relate with nor excuse it. It simply did not exist. It was a stamp for weakness. But recently having suddenly tasted the pill of failure despite the heavy doses of hard work and optimism I had mustered, I began to appreciate failure. I began to see how the elusiveness of the target could either be a propeller or dissuader. I began to appreciate how failure could secure success or destroy egos. I had no idea that I was such a bad loser until I began to experience failure. I had enjoyed so many victories, I did not know how to fail. Failure really sucks trust me but the truth is that as long as we are trapped in our humanity, it is a phenomenon that is sometimes inevitable. Survival of the fittest!  You are not the only one on a mission to succeed so sometimes others will have their own turn…Let them shine after all when you were a winner, they too watched you take your turn on the pedestal of success. So in order to experience the lessons hidden in failure, we need to learn how to fail. Failure helps us realise that we are human and as such we can never be perfect always. It helps us pay more attention to the things we will normally overlook. It not only makes us aware that what we are trying is not working but pushes us to find new ways that can work. Failing is not really losing, It is in reality a postponed victory. Losing is when you stop trying to find a way to win. Every one will get their own turn only if they keep trying. One thing failure does best is make the victory even sweeter when it finally arrives. Failure provides an opportunity to learn more accurately as we strive to aim higher in our attempt secure success. Failure allows us go through a process by providing us with experiences that strengthen our awareness of success. In order to achieve this, failure helps us listen more closely to the wisdom in the hidden lessons that we can build on as we edge closer to victory. The journey to success that is stretched longer by failure is  the journey that sculpts and fashions  us into tougher beings as we strive and never give up. The one who attains immediate victory knows only the way that works while the one who fails severally before experiencing victory knows not only the way that works but is also the most certain about the ways that don’t work. This knowledge secures the victory once attained because there will be no reason to drift away from the path of success. If we can be kinder to ourselves when we fail, we will be less scarred by failure. Failure is nature’s way of telling us that we are not ready. Failure does not mean that you are not good enough, it just means that you have not yet found the way. Look at it this way, even if you have the best car in the world, you cannot drive from point A to B if you do not know the way that leads from A to B. Even if that car is a Bugatti, the man on a bicycle who has the map or knowledge about how to get from point A to B will get there before you. This does notmake his means of transportation better than yours. Therefore, when we fail, let us stop taking failure personal. Let us start asking the right questions about why we are failing or what we need to get us to where we need to be. Let us go back to the basics if we have to. We must keep trying until we find a way that works. In the end we will be rewarded not only with the victory we seek but with information about so many other ways that may equip is in other endeavours. […]

The power of failure- Why a bit of failure can be a good thing.

Seriously…. How many children do I have? Well, in reality and to most ordinary parents, this would be their most savoured question. It is like the one they expect and hope to be asked as soon as their parental status comes to light. It may go in the lines of …so how many children do you have?… It will be the opportunity for most parents to go on about the number of children and possibly how cute they are, how old they are, what they are up to. Some might even add a moan or two about how “stressful” parenting is…. Well, blady, blah blah. For me, that question is the one I dread as a parent. The question is like a needle that stings my heart leading to an eruption of extremely distressing emotions. Sound strange? Well, welcome to my world. I used to have very many children and now for some reason, I am left with just one. One lonely child who is now not only left with me, but left alone without a sibling. What a wicked world! Sadly, they all died. My child is only 7 and she has been through the works with me. Well, before you turn on the pity, I just want you to know that I do not actually intend shedding any more light about my situation. Please don’t give me that look…don’t I know it? Well, worse things happen so get over it! Anyway, the reason that question creates a huge emotional sting for me is because when it pops up harmlessly, it leaves me clueless as to how to approach the answer fairly. Technically, I have 2 possible answers I can say I have just one child. But you see, the question is ambiguous if you ask me. How many children, triggers numbers in my head. I had numbers to present to this quiz master but now I have just one child left. To be fair “do you have?” specifically refers to the present tense. You know, like the current state of affairs…which would be 1! This brings me nicely into my second possible answer. I  can say I have one “left”. This also satisfies the answer in the context of the present. However, it also creates an awareness of a change in status quo. “Left” kind of brings the existence of some other persons who were but who now are not here into the knowledge of the quiz master. It’s like dragging them into a party where they are really no longer welcome. At least not to the living who are always inconvenienced by this knowledge. Yes, I insist that creating this awareness is always an unintended inconvenience posed by my response which the hearer has to deal with. Apologies begin to spring up by the askers who suddenly wish they did not ask. Or worse still, who start to worry that by leading me to this response, I will suddenly become so upset that I need one thousand apologies to feel better. No, the apologies do not make me feel better. They only scratch the elephant that enters the room with claws of pity. I won’t break just because I make you aware of my status. Remember I provided the answer even though you asked. So there you go, I have spilled the beans. It’s ok to feel troubled by my answer. To worry about how I might feel afterwards but please don’t fixate. Don’t let it take over the rest of the conversation. Don’t let it make the mood sour. The reason I chose to give this answer has nothing to do with you. It has instead to do with my angels. I just feel like it will be so unfair to give an answer that does not acknowledge their existence in this world however fleeting. It is also not fair on me. It psychologically and emotionally takes a lot from a man to be in this position… to move from being the “one time father” of many nations and to becoming the father of one clan. So that answer gives me a sense of pride too. Its not easy to be me. To cope with as much losses as I have had to. It’s my only chance to show off my strength as a person. Yeah yeah…it sounds lame. Well, it’s not my fault that I no longer have victories at soccer, or straight A exams to boast about for my angel children. But I am still proud that I am still standing here in one piece living and coping with the void that their departures have created. Cheers!   Photo credit: Pixabay

Question of the day: How many Children do you have?

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

It was a lovely party and the music was on full blast. Everyone was so excited. I was dancing really hard. My heart was pounding and I could feel the adrenaline rush. Oh! how I loved parties. This one was being hosted by my friend Nkem. No one could pull off this scale of grove better than him. Everyone was there. Everyone that mattered. There was booze, food, small chops …everything. However, despite all the fun,I had a niggling feeling I could not shift. It was exploding within me but the fun was just too much to attend to it. Dance! Dance!! Dance!!! That’s all I was doing. I was just helpless to the beat. Until….. It exploded…. I ran as fast as my feet could carry me to save me the embarrassment. I was 39 years old. How could I explain what was happening. I ran past a couple making out at the foot of the stairs, brushed past a few people on the corridor. I wished I had wings. From my peripheral vision, I could see that none of them could tell what was happening to me. That was a relief. The door was in sight. Phew… I would sort myself out as soon as I reached it. If only I could get there very quickly. It must have been just five steps away. I could see the door and all I wanted was to get behind it. This explosion was under control…at least for now. Suddenly it began to turn into a burning sensation. Bang! Bang!! Bang!!! I wished my fist could burst the door. I was banging for dear life. The door was locked. Someone was in there. “Come out…. come out….”, I screamed. My voice was inaudible with all the racket.The damned music! I could not believe that I had let the silly beats get me into trouble. The door began to open…. slowly….but it was too late.  I could feel the woosh. The explosion was officially on full blast . I managed to save my face as I slammed the door shut behind me. I had peed my pants. It was so embarrassing. At my age, I could not imagine that I had been so daft. I managed to sit on the loo. My bladder was still very full despite the accident. There was more but it felt stuck. “Why can’t I wee?”, I wondered. I tried to push the wee like a woman in labour. I pushed and pushed without success.  It just did not budge. “Was I sick? What was wrong with me?”, I could feel myself entering panic mode. Don’t do it…Don’t wee… Who was saying that? I could hear the faint cry in the distance There was a burning pain in my groin now. So I tried to push again. Don’t doooo iiiiiiiittttt! “Shut up… who the hell is saying this. What is happening to me?”, I screamed feeling very upset. “I need to gooooo”, I said sobbing quietly. pheeeewwwwwww…….. The sound of my relief as I let the sweet urine pour out from my bladder through my itsy bitsies down the toilet. I shut my eyes and enjoyed the relief. Who was saying that.  But suddenly my legs began to feel wet. Errrm… I was sitting on a toilet, why was my body feeling wet. This was a weird day. I had not drank a drop of alcohol. I felt horrified. “Wake up ! Wake up ! You are soaked!”, That was definitely a man’s voice. It was Noah my partner. How did he enter the toilet? Surely, I locked the door behind me. So I opened my eyes curiously wondering how on earth that happened. I was soaked. It was Noah alright, but I was not in the damned toilet! I must have emptied a truckload of urine on our bed….again. “Are you ok darling?”, Noah asked me calmly but no matter how he tried to downplay the obvious, I was too embarrassed to speak. I picked up the pillow and hid my face. OMG! I was soaked in my own waste! I did not answer… I was still in shock. I am 39 years old and have no idea what to do! Thanks for reading Photo credit: Pixabay

A wet dream

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.