Daily Archives: April 10, 2017


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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


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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.