Thursday, 12 November 2009


Forgive the jumping around but on Monday, Monkey would have been five and I want to talk about that. Five. What would he have been doing? He'd have been at school - that much I know. Other than that, it's actually quite hard to imagine. He'd have been a lot bigger! And heavier. We would have had to have had that hoist installed. But what would he be able to do? I don't know. I can't look at other five year olds for that to be immediately obvious. Would he have been able to sit in his chair and hold his head up for any length of time? Would he have perfected his 'smile'? Would he have been able to press a switch on his tray to get my attention or activate a toy? The latter being what I had dreamt that one day he might be able to do. His disability was severe.

I can probably tell you a lot more about what he still wouldn't have been doing. He would not have been able to sit unaided. He would not have been able to turn to someone who spoke. He wouldn't have a regular or obvious smile. He wouldn't have said Mama.

I have so many questions but not enough time to think about them. What would I have been doing? A subject for another time! Too long for now. Would his brothers love him? Would they resent him? How would my husband be coping? What would life be like? Hospital appointments. Therapists. Stays in hospital - chest infections/operations. Suurounded by medical equipment. Regular vomiting. Constipation followed by (amazing) diarrhoea.

Does it matter? All these hypothetical questions? It does to me, it matters a lot. Sometimes when I'm cuddling Pickle & Wotsit, I need to know where Monkey would have been. I need to know that he wouldn't have been left out. I don't want to forget and this is a way to remember. I also want, at a point in my life when my children don't completely monopolise me, to be able to work in some way with families going through some of these things. I hope that I can help, whether emotionally or practically I'm not sure but if I can remember what it's like to be a Mum to child with a disability, I think I'll be better qualified.

So what did Monday entail? I really wanted some time on my own. Not to cry - although that was part of it - but just to remember and think about the answers to these questions. However, people worry about you being on your own and want to keep you company! So my lovely husband joined me at home. The day was fine. It is just another day, like any other. I tidied the house, messed about on the internet, looked at some photos and missed my son.

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