CHRISTOPHER’S STORY

Since I have been a member of the CAH Support Group I have been reading articles from parents about discovering their child had CAH. Each time I thought, I can relate to that, I could write one of those.

When I sat down to write this I meant to write about how awful I felt discovering Christopher had a genetic condition, especially one for a part of the body I didn’t know existed (and I’d done biology at school!). Then I thought about how far we’ve come since then. We count out tablets as if it’s normal behaviour now, and didn’t every baby have salt in his milk? But I don’t look at Christopher and think "my child has a problem". I don’t spend all my time worrying about how we’ll cope. I may worry about how I’ll occupy him for the next five seconds – but not whether he’ll be ill during it.

In the last 15 months Christopher has grown into a lively, bright, loving and cheerful toddler. He laughs at everything, he’s very inquisitive and sometimes drives us mad – but above all he’s a normal little boy. I think there is a tendency when your child has a problem to assume that everything is related to that. Christopher had nine ear infections over the winter. Was that because he has CAH? Probably not, my friend’s little boy had nearly as many trips to the doctor for various things. Christopher went through a stage of hitting and biting everyone or everything. Was that because he has CAH? Probably not, he’s at nursery and is one of the better behaved, and he’s outgrown that now anyway.

Christopher is our first child so we have no previous experience to go on, but we know quite a few parents with children of the same age. We don’t have any more problems than they do. Yes, we have difficulties. There were times when I felt like a permanent fixture at the doctor’s surgery (after all I was there more than I was at home!) but that’s all part of having a child.

When your child is first diagnosed, it’s like the world has ended, and medicine for life sounds like such a dismal prospect. I went to talk to a local Rainbow Guide unit (with girls aged 4-6) the other week as they’d been fund raising for the CAH Support Group. They expected Christopher to look ill – after all, he takes medicine, so he’s got to be poorly, hasn’t he? The first thing I told them was Christopher is NOT ill. That told me just how far we’d come in the last 15 months. We haven’t got a poorly child, we have a child. Of course, it is important to be aware of the signs of Adrenal Crisis. It’s important to make sure he takes the medicine and that it’s at the right levels. But most importantly, be aware that he is a child. Children with CAH are all unique and will have their own personalities, likes and dislikes, and these will shape the people they become – not the CAH.

I expect we’ll have more problems over the coming years. Some will be related to CAH, but most won’t. I don’t intend to stop Christopher doing what he wants as he grows up ‘just in case there’s a problem’. If there is, we’ll cope with it. If he wants to play rugby or football, I won’t stop him, after all what kind of life is it if you can’t do what you want? When Christopher was diagnosed, we were told he would be an ordinary child, and I can’t disagree with that.

 

Sallyann Blackett

Kingsbury, Tamworth

 

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