Monthly Archives: March 2017


medical-1617364_640
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


artistic-2063_640
This is going to be a very interesting write up. I say interesting not because I think that its contents might interest you but because of what I am actually doing while writing. One setback a writer has is the inability to show in real time what he or she intends to describe especially when the discussion is about is something in motion at the time the writing is supposed to be taking place. What am I doing? I am trying to tell you what I am doing now.  Now….I am painting a picture of a city. Actually I am colouring it in more like! I certainly cannot be trusted to paint because I am too fidgety! Earlier…. I found myself in a shop… It was a stationary shop in town. This one was with a twist. Everything was so colourful… so beautiful. There were tons of notebooks, jotters, journals, diaries, pencils, sticky notes, pencil cases… I was spoiled for choice. It was the most beautiful stationery shop I had ever been in. There was every colour of the rainbow in that shop. I got so excited that I felt like a child again. In an instant I began missing my mom. I had that dejavu feeling-  like she was somewhere in the shop asking me to stop staring at everything. The thought made me smile because deep down inside I was happy she wasn’t there to stop me. What’s more, I had my own money to spend! Why am I telling you this? You see the feeling I was experiencing was one I liked to give myself from time to time. We all go through different forms of stress in fact who doesn’t? Stress is part and parcel of life. We all say we like to wind down sometimes. But how do we do that?  Do we perform actions that make us feel more stressed without even realising? Or do we actually find ways to wind down? I have always been the sort of person to buy myself a birthday present every year. Call me self-indulgent but I’ll tell you one thing: …“ everyone needs to be spoiled”… Waiting for someone to spoil you can be overrated. It might come with its own baggage. Who better to take you out eh? You know what you like … you know the restaurants you love to dine … you know what you love to wear … you know where to go … and so on. So you see, I was not wrong afterall… You have all the answers!!! Giving yourself a treat does not have to be expensive. I love a spot of window shopping any time any day. As the Queen of impulse buying, is my only survival strategy. Some people like to eat… Sweet chocolates biscuits you name it. Getting yourself to walk past a cake shop might be enough to add that extra spark to your day. Whether you actually buy something is up to you. Do you remember that thrill … that buzz … and that feeling of excitement you felt as a child when you were invited to one of those colourful places that made you daydream?  Well, you can still let yourself feel that buzz again even now you are grown-up. The good news is that unlike when you were a kid, there is no one stopping you from buying what you want now! So every once in awhile when life gets as stressful as we know it can get, take some time out to give yourself a treat. Finally … I have just completed that painting…sorry…colouring. The splash of colours on the paper is one of the things that always excites me. It sets my imagination ablaze. The thrill of witnessing the transformation of a white piece of paper as it turns slowly into something beautiful is what I find most elating. I feel like no matter how useless I am or  how hopeless things are, this provides a chance for me to do one thing right. Never mind the fact that my only contribution to the masterpiece is a few strokes of my colouring pencil, it is my own part and I got that right!  It passes the time and helps me feel useful. When we feel useful, then we can feel happy and glad to be alive. So even though you don’t know me and I don’t know you, we have one thing in common: we are all people trying to do the best we can with the one life we have. Life is too short not to take time out to spend time doing something for yourself. Try it today. Live free! Thank you for reading. You may also like to read other articles like this. They can be found here. Photo Credit: Pixabay.

An easier way to spoil yourself



medical-1617364_640
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


grave-2036220_640
This series was created to share with our readers the thoughts and emotions of a grieving parent dealing with the monumental tragedy of losing a child. Enjoy! For the next few weeks, I have decided to pen (or type) down my feelings as I walk my way through … and hopefully …walk my way out … of the weight of the emotions that have taken up abode in my heart since my son’s demise in February this year. I, as usual, refuse to let this whole experience be the end of me… but a rebirth. I am absolutely certain that within this circumstance, there will be many lessons to learn. Hopefully many interesting emotions too! I can certainly testify to the fact that I have been swept by many so far.  I will tell you about this one that I feel I have just come through: GETTING HIS FUNERAL SERVICE DONE We had the final service in memory of our son at the St Christopher’s chapel at Great Ormond street Hospital London. It was special. After a lot of e-mails and phone calls back and forth between the chaplain and I, we pulled it off! When Fred died, I was not really sure about how the next hour would be because it hardly made any sense to me. All I knew was that I was not going to let myself worry. The worst had happened and in my mind, everything would be easier…fall into place. Nothing could possibly be worse than his death. I set out asking questions and being initiated into a new world of funerals, flowers, invitation cards, thank you cards and what have you. One by one each activity slipped into place. We were directed to the Coop funeral services by another lovely parent whose daughter had also sadly passed away. She reassured me about how personal and comforting their service was. I knew I had to contact them. Although I had been referred to many other directors locally, I could not shake off the reassurance in this woman’s voice. So I made the call one morning and booked an appointment. The atmosphere was serene and comforting when we arrived. They put me at the centre of all the discussions to my discomfort. As a woman of African origin, it was quite difficult for me to have these discussions when my husband was present. It just felt disrespectful. He was the dad too. Interestingly there was a cultural shift in my favour. My husband was too westernised to care so I ignored the discomfort and let myself enjoy being at the centre of the deliberations. It began to feel comforting that I was being indulged in a sense as the “Mother of the child”. As soon as the signatures and payments were done, the Coop funeral services took over. They handled bringing our boy back home and all I really had to do was focus on giving him the best send-off. The day of the funeral service was a day of remembrance. We had all Fred’s nursery rhymes on cue. We had no hymns per se. What we sang were two of Fred’s favourite nursery rhymes. Row your boat and Twinkle little star. We all shared fond memories of him throughout the service. His lead consultant, Ward sister, School teacher and Former PA to the consultant gave lovely tributes to my boy. There was laughter and love in that chapel that day. It was filled to capacity with all his team. It was amazing that everyone could find the time to come and I will remain eternally grateful to everyone who attended physically. Many hearts were united with us from all over the world… those who could not attend in person. I appreciate all their prayers too. It was also a memorable experience for Mark who now is left without a brother. He kept asking if he could play in the hospital Activity Centre because he had missed not being in the hospital for that reason. It was lovely that everyone who attended made the day special for us as a family. We all felt fired up with strength for the event of the following day which was the day Fred was to be committed to Mother Earth. We did not really want to invite anyone because we were very conscious of what Fred meant to everyone. He was a special cheerful boy and we worried that it would be too much emotionally for some. On that sunny Friday morning, we arrived the Cemetery all set to go on that final walk with our boy. But guess what? We met all the nurses in his Local team right there waiting to walk with us. It was amazing. His consultant was in attendance, some  representatives from GOSH, even Mark’s class teacher attended. We also had friends, Family, Fred’s school Driver, people from his school….we were blown away. Now I am sitting here this sunny Sunday afternoon thinking about how blessed I have been because of Fred. He drew all these people into my life. All this love, comfort and support network now surround me. I am blessed because he was mine. I feel honoured to have been the one who bore him. We hope to learn more about Propionic Academia because Fred once walked this earth. His life may have been short, but it was long enough for him. This is a vote of thanks to everyone who has stepped into our life in the last 4 years. We love you all. Not forgetting all of you online who have supported us through this most difficult time. We appreciate you too. Thank you for reading If you enjoyed this, you will find more articles like this here Photo credit: Pixabay  

Death at my door D.A.M.D (Musings of a grieving parent) Part 1 – THE FUNERAL SERVICE



house-of-cards-763246_640 (2)
A good friend of mine sat across me with so much excitement in his eyes as he narrated how he landed his dream job with little or no effort on his part. He saw it as nothing short of the miracle he had been praying for. I was so happy for him that I couldn’t hold back my questions as to how and when it all happened. In that moment, all I could feel was genuine satisfaction that someone who was in a similar situation as I was had found his breakthrough, but as a human being I couldn’t help but have mixed feelings later on when I sat alone thinking about how his prayers and not mine had been answered. Selfish, right? This is the constant battle we face as human beings. The ability to be truly happy for the progress or success of others without making it about ourselves generally eludes us. I am not saying that human beings are naturally bitter. However, the act of being absolutely selfless while rejoicing with the friends or family members who have succeeded at something we have not achieved is difficult. You may have tried a number of times to perform a particular activity without a breakthrough. When you later find yourself sitting across someone who with little or no visible effort has achieved that very dream of yours will you be honestly happy for them? Do you rejoice without remembering your failures, setbacks and regrets? It is really difficult but possible. How you may ask? Well, here is how… 1)Remember that we all walk different paths in life and so you shouldn’t be comparing your successes, your failures, your pains and generally, your life to that of other people. 2)Be grateful for every situation you find yourself in so that you can use every story of success around you to fuel your hunger to achieve your dream. Do this not only because you are competing but because you truly want that job, that promotion or that marriage. Be willing to put in the extra effort required to get it. 3)Wish people nothing but the best and be sincere when rejoicing with them in their time of plenty so that when you are blessed beyond your imaginations, true and equally genuine people would surround and celebrate you. Who wouldn’t like that, I guess we all do, so be that person. 4)Do not let your current struggles leave you bitter or make you a HATER. You are bigger than your present reality. 5)Most importantly, remember that your life is a journey. So be sure to enjoy yours and celebrate your milestones. Whenever you achieve something you have worked or prayed for, look back at your mindset while you waited. If you were patient, you would find that the wait was worth it and you will truly value your accomplishment. On the other hand, if you lived in constant worry while waiting, it would be absolutely clear how unnecessary that was. Worrying about things that have not yet been attained only deprive you of happiness. All you need to do during those times is to master the art of patience. So live in the moment, be grateful and be PATIENT because that’s all you need to lead a fulfilling life. Thank you for reading. You may also like others from this series About the author : Ezimen is a professional in the daytime. He loves writing, travelling and having fun! Do you know that you can now submit a post like this? To find out how, click here. Perhaps you fancy reading from others in the community? Find other articles here. Thank you Photo credit: Pixabay

Life requires Patience…By Ezimen


business
Feminism should not create the yardstick by which women should express themselves. It should create a platform to enable women showcase and express their diverse natures and features as women “isms” crop up as soon as a minority or sect feel that their rights are not being adequately upheld. Their voices are either not heard or misinterpreted. I have never heard of “male-inism” to be the opposite of feminism. That’s because men by their nature feel very sure about themselves. Some of them even take it a step further by feeling that they are in full custody of self-expression. Somewhere in the history of men and women, the need for feminism came into being to uphold the rights of women. It arose to address issues concerning women. It came about to bring equality between men and women. To say to mankind “hey what is good for the goose will not kill the gander. In fact it can actually be good for the gander!” I do not think that the true purpose of feminism is to suppress man’s expression of himself. The purpose of feminism is rather to create an avenue for accommodating women’s needs. Feminism should give women a voice so they can express their views and ideas. It should make them realise that their opinions matter too in every aspect of life as do men’s. What I see sometimes is the existence of what I like to call neo-feminism. It’s like a twist to the real ideology of feminism. It is an ideology that proposes that women have now come of age and have now evolved from the position they struggled to attain-as equals with men, to a point of superiority to men and unfortunately even women who fail to imbibe their ideologies. The neo-feminist says “I am superior” and you know what, I will do all I can to prove it!” So this ideology begets a new group of women who create new norms and rules about what qualifies or disqualifies you as a feminist. They dictate these by their actions, ideologies and comments in the media. They in turn begin to feel superior to the rest of “womanity”. They do this by imposing their “perfect feminism” over women through their endless attempts at telling them what to do. They dismiss other women who do not appear to fit their mould while portraying their feminist images and incantations needlessly. They would want to fool us into regarding the for-bearers of this said feminism as archaic. Our grandmothers, great-grandmothers and ancestors in the good old days once stood disheveled as they struggled to pay their own way in a world that treated them as second class and mostly articles and properties tied to “man”-kind. Where they found jobs, they were seldom remunerated fairly or appropriately. They had no say in all matters including those that affected them directly. When they stood, they found the time to give other less privileged women a voice. They worked to include all women in their fight. They did not segregate them into pseudo-groups. When they clamoured for female emancipation during their hay days, It was with style, grace, eloquence and dignity. They were to me even more feminist than we all will ever be. They were the truly oppressed who lived in a world were women did not matter as much. Yet their unity of purposed paved the way for what we now enjoy to a large extent as equality, unity and ultimately feminism. Are they less feminist than women perpetually portrayed as feminist through their mostly material self projections in the press?   Thank you for reading. You may also like to read other articles like this. They can be found here. Photo Credit: Pixabay.

International Women’s Day : Beware of the “Neo-feminist”



dictionary-432043_640
WORLD BOOK DAY That was celebrated worldwide yesterday….. However, before I tell you my thoughts about it, I want to just say THANK YOU FOR ALL YOUR KIND, WARM AND COMFORTING MESSAGES. So back to world book day… Little Mark and his daddy shared a book while on the train earlier in the week. In this day and age books have now taken different shapes and forms. This applies to books meant for children and adults. On that day, the book in question was an audio book called “Nuts in Space” written by Elys Dolan. The truth about books and children is that when you throw “Lauretta” into the mix, what you get is a massive mistake🙀. You won’t believe it but as much as I love reading books, I hate reading stories to children 🙈. There you have it…I said it! I just find it boring and I don’t mind admitting it. As an African parent, I can confess that I have no recollection of stories being read to me as a child. Stories were “told” to me mainly by my dad. These were very interesting stories by the way. Story telling is a very important and popular part of African culture but it usually ends there. Even in the villages and cities, people gather round to talk about their day. Visitors come to homes and bring tales with them. Stories about their experiences, other people’s stories and not forgetting “rumours”😀. I remember “tales by moonlight” on NTA network service as a child. I even remember “storyland by Jimmy Solanke”. We sat and watched-listened to them. Anyway, the culture of writing down the stories is not as popular as telling them. This is one of the reasons why many integral parts of the culture and facts about ancestry and ways are beginning to be watered down. Simply because elders die with their wisdom and knowledge leaving many guessing. Books provide an avenue for preservation of thoughts, ideas, fact or fiction. When you write something down, you trap it. You trap the thought as it is and you trap the memory created by that thought process in the pages of that book. When you are absent, a book also evolves into a tool that speaks for you. It also educates other people about the facts they contain. They create a coherence in the flow of thoughts that can then be learnt by others, built on, discarded or just kept for future generations. As an African in diaspora, I loved the book culture I met. The book culture inculcated in children from the cradle. Books here create a bonding opportunity for parents and their kids. They can help create stability in a young mind. For example the fact that the child will be read to can be the one thing they find to be constant. Books can also be comforting and soothing to a child by surrounding the child with the voice of the reader when they are being read to. So bearing these in mind, you will appreciate how lost and inadequate I felt as a mum about the whole “book project!” The good thing about confronting ones fears is that it is the first step to finding solutions. When you bury your head in the sand, you stay down but when you lift your head up, you find hope. This led me to discovering that I could use the one thing I was almost locking away from my child- Technology! The good news for parents like me in this world has been the introduction of technology. While there are many arguments for and against uniting kids with technology at an early age, I cannot really take a side. At least not today. What I can do though, is tell you about my observation : “Technology can be a saviour for mums- especially if you have been as stressed (caring for a sick child) as I have been these past couple of years. What I think can become a problem is when you let technology take over parenting. There should be some supervision and guidance in order to maximise the benefits of technology for kids. The interface that technology provides for children is not only entertaining and amazing but it is also fun! It helps create memorable dexperiences for children. What I love about it is the return patronage element it always has. Children keep asking for devices and wanting to play with them. It also holds their attention for longer than you can barely boast of with kids- including toddlers. Just as I was about to bin the silly time-consuming devices, I stopped to take a closer look at it. I examined the annoyingly obvious characteristics of technology and balanced it against my parenting inadequacies (especially my story-book- reading-hatred). What I got was a solution! So imagine carefully mixing play time and study time with some technology. What you can end up with is an engaging interaction between you, your child and the gadget. In the end, as long as you can get your child’s attention (which by the way can be a Herculean task for you the human and an “easy-peezy-lemon-squeezy” task for the device), you may actually end up teaching them some useful skills. I have learnt to use this new trusty companion to my advantage. You will be judging Mark wrongly if you saw him playing with my phone. It is the one tool that has helped him learn to read and now provides access to tons of books and educative games to help keep his little inquisitive mind fed. At last…. I can now sincerely join the world book day celebrations this year! We enjoyed many books this year. We have listened through the year to stories being read to us by different devices while all we had to do was sit back, relax and pay attention. I have not had to worry about my no 1 parenting flaw of not wanting to read to […]

World Book Day


rf
RAINFOREST WARD It is a time in my life that I can never forget. I first walked through those doors 4 years ago when my son Otito was born. He had gone straight into coma and our world was shattered. A simple birth has turned into a nightmare. At a time when we were trying to make sense of the diagnosis, we walked into the loving and welcoming arms on rainforest ward. It’s a ward unlike any other at GOSH because I have been through many wards along the way with my boy unfortunately. There is a personal touch to the care you get on Rainforest ward. The culture and atmosphere is exemplary. The staff there are a team. There is a feeling of peaceful coexistence and healthy rivalry. Not the usual cut throat competition that is quite common in some female dominated professions. In the last year, it became my son’s home- our second home. He was looked after and loved on Rainforest ward. I often wondered if he would ever adjust to life at home after being spoiled by the nurses who loved him to bits. Now and especially at this time, I look at those doors behind me with fondness. Although he never made it back home, he was at home there. When he was there, he was less of a patient and through the year that was to be his last and in their care, we saw more of the happy little boy that he deserved to be. That gives me peace. The interesting thing about hospital life is the unintentional intertwining and inter-mingling with so many people. You learn to get along with them and adjust to all their qualms. In the end, a peaceful coexistence ensues. I remember good times and sad times in equal measure. I resist the urge to sway towards being stuck in the sad times. Instead, I deliberately swing the bias towards the happy times. Otito brought these wonderful people into my life. Had I not birthed him and nursed him through the roller coaster years, I would have remained oblivious to the reality of the wonderful team existing behind those doors. For this I am thankful. When Otito passed away, I saw all the pain and I watched the tears flow through their eyes and I felt very lucky to have them all in my life. Sharing the pain with these team of love made it easier to bear. No epistle can convey how tough the last year has been. However, in the company of the staff on the ward, I felt like they witnessed my struggle and no explanation was required. Therefore I could just get on with trying to make sense of what had unfolded. Rainforest ward was our ward. I made and formed new friendships with many parents that I can never forget. You see, there is one privilege of having a tumultuous life as I have had. You begin to see that many things are overrated. “Friendship” is one of those. Sadly, many long formed relationships fizzle to a trickle. Phone calls reduce to faded chat lines until they become history. This is usually not intentional but it happens anyway. Having a sick child can take you into a different league. You begin to have less common interests with old friends until you drift apart. Old friends cannot identify with your new reality. Trying to get their attention may keep you spinning until you are saddled with so much emotional baggage at a time when you need less stress. I had a friend once think that I was lying when I said my son was sick- again. My supposed friend in not so many words said “Like seriously, how can someone be so unwell?” before ending the statement with the usual “bless him”. On the other hand, I also experienced the helplessness from friends who would have loved to help but did not know how or were too far away. I made new friends on rainforest ward. When I did, the gap was filled. I did not mean to make them but they happened because they could feel my pain. We were in the boat together. Somehow they got it! It was a comforting relationship. We all were united in the struggle and pain we felt for our children. We were fighters and pulled one another along the way. We shared tips and tricks depending on what we had learnt. I am sitting on my sofa now missing them all. Somehow like before, I know that no matter how I try, life will happen again and the calls will fade because we are now in different worlds. We will begin to have less things in common. My day will probably begin to have different events. I may start to feel insensitive when I call to moan about my new challenges and you may start to call less because you do not want to disturb me with your Parent Caring challenges. But it doesn’t have to be that way because no matter what happens, I will always get it. If you have walked this path, you are never the same. It changes your life positively if you let it. You become more sensitive to things you never could have thought you would even notice. One of the mums gave me a life time membership of the Parent carers club. Like an invisible alumni. It was comforting because it really feels strange being “normal” again. I feel like a bit of a cheat- being relieved of my duties so suddenly! For the first time yesterday, I experienced something weird. Before I tell you what it is, I will take you down my lane of memory to help you understand why it felt wierd…. In 2012 when I watched the London 2012 opening ceremony, pregnant, I saw a display by “Drs and nurses at Great Ormond street hospital” and thought -Awwww, bless. God help “those” people. After that, […]

Rainforest Ward…Otito’s final home. (A thank you letter to all the teams that made his last year special)