Hi all,
My daughter has cp and epilepsy, due to her brain not developing properly during pregnancy (although we didn't know this at the time)
We had no clue anything was wrong until she wasn't reaching her milestones, and she got diagnosed at 9 months old, we were devastated
and spent months crying about the things she wouldn't be able to do and the life she wouldn't be able to have. Trying to figure out why this had happened, when I had had such a lovely pregnancy, and thinking I must have done something wrong, to cause this. The docs can't explain why it happened, we'll probably never know.
6 years on, and we have finally come to terms with it. Although, she is dependant on us for everything, she's in a wheelchair, needs spoon feeding, still in nappies, and is non-verbal. Her epilepsy causes us no end of worry but is on the milder end of the scale, so we shouldn't complain. The only way she can communicate her needs is to either cry (then we have to mind read!) or she has a special communication book, which has symbols in it that she can point to.
Considering her diagnosis her level of understanding is higher than people give her credit for, and she has a wicked sense of humour. Everybody who meets her falls in love with her, she draws them in with her beautiful eyes and cheeky smile!
Her communication is coming on really well, but she'll never walk - that, I don't have a problem with, although most people see that as the worst thing ever. I just want her to be able to communicate her needs at least. She's even using an ipad at school!
Anyway, I suppose all I'm saying is that, yes its devastating news to hear your child has cp, but time is a great healer and eventually it just becomes part of your life. A different more difficult life but also, more rewarding and you get to learn things about yourself you didn't know along the way.
I hope this is helpful to someone.
PS No offence, but don't read that Holland poem if you're newly diagnosed like I did, I DIDN'T WANT TO GO TO Holland, I don't care what anybody says, it doesn't make you feel any better reading that poem just more depressed (but thats my opinion lol!)