Daily Archives: February 24, 2017


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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