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 didnt know existed (and Id done biology at school!). Then I thought about how far weve come since then. We count out tablets as if its normal behaviour now, and didnt every baby have salt in his milk? But I dont look at Christopher and think "my child has a problem". I dont spend all my time worrying about how well cope. I may worry about how Ill occupy him for the next five seconds but not whether hell be ill during it.
In the last 15 months Christopher has grown into a lively, bright, loving and cheerful toddler. He laughs at everything, hes very inquisitive and sometimes drives us mad but above all hes 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 friends 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, hes at nursery and is one of the better behaved, and hes 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 dont have any more problems than they do. Yes, we have difficulties. There were times when I felt like a permanent fixture at the doctors surgery (after all I was there more than I was at home!) but thats all part of having a child.
When your child is first diagnosed, its 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 theyd been fund raising for the CAH Support Group. They expected Christopher to look ill after all, he takes medicine, so hes got to be poorly, hasnt he? The first thing I told them was Christopher is NOT ill. That told me just how far wed come in the last 15 months. We havent got a poorly child, we have a child. Of course, it is important to be aware of the signs of Adrenal Crisis. Its important to make sure he takes the medicine and that its 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 well have more problems over the coming years. Some will be related to CAH, but most wont. I dont intend to stop Christopher doing what he wants as he grows up just in case theres a problem. If there is, well cope with it. If he wants to play rugby or football, I wont stop him, after all what kind of life is it if you cant do what you want? When Christopher was diagnosed, we were told he would be an ordinary child, and I cant disagree with that.
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