So your child has just been diagnosed with cerebral palsy? I’m sorry, that sucks. It really does. No, your lives won’t be the same, nor will that of your child. I guess it’s still too early to be able to tell how things will be. It’s okay to mourn what could have been. We all wonder sometimes. Just remember to find the good bits in the current moment, however small or fleeting (given time, you really will find some).
And no, neither one of you did anything to deserve this. Even though I know you do, you shouldn’t feel guilty for this. Hopefully time will fade that a little. It sounds lame, and I know you want a reason as to why you and not someone else, but there really isn’t one.
You are probably seeing heaps of professionals, each offering their own opinion. Does your head hurt yet? Listen to them, they do know things, but at the same time be aware that opinions and facts aren’t certainty. I wasn’t supposed to be able to write – there is always room for a little hope.
Get to know who your child is. Find moments to put the rest aside – you don’t always have to make room for the clouds overhead. Forget the words – notice what makes them smile, what they like, what they hate ... This is the person you made, no matter how things may seem, I’m betting s/he still has someone’s eyes or smile. Let your child do what isn’t good for them once in a while – even just once a month. I don’t remember each day that I stood in a frame, but I do remember the days I was allowed not to!
While you’re giving your child a break, give yourselves one too. A day here or there is not failure; a life outside of those two words (cerebral palsy) is possible. Take some time whenever you can to find it.
Let your family and friends help you. Your child is made of tough stuff; they won’t break if it’s not done the way you would do it. If they don’t normally have something done that way, let them try it out.
Having a disability will not take away your child’s opportunity to create mischief. Even those of us who you assume can’t, will find a way. I have fallen into pools with my electric chair and that’s just the beginning.
A child with disabilities will become an adult with disabilities. To the best of your ability, try to raise them as a person first.
By all means, let your child know how special they are because of who they are and how they view things. No matter their physical circumstances, you can encourage them to have a character you will be proud of. Rest assured, people will notice that too. ‘Please’ and ‘thank you’ will always be appreciated by those who will be there to give them a hand here and there in life.
Please don’t foster in them the idea that having a disability makes them special. From what I have seen, attitudes like that only make the world beyond you harder to be a part of. There are times when a disability should be disregarded. Disability is not a right to ‘snottiness‘.
Unfortunately you can’t control what happens in your child’s life, irrespective of any diagnosis. No parent ever can. Yes, your child will have experiences that you will never have wanted for them, but they will survive and learn how to live with them. Stories that will either be saved for dinner conversation or that your child will keep to themselves and reflect upon as reinforcement of their survival skills later on – on the days they’ve had enough. They will have those too. Everybody does.
Make plans for the future. Find all the support you can, it never hurts to be prepared. Some things you’ll be ready for, other things, not so much. That’s just life. Your child will still have people that love them. They will have friends, enemies and the occasional partner that you can’t stand. If that happens, be a nice parent and just pretend. Your child will still want to do all the things you did and, with a bit of luck, they’ll find a way to get most of it done. The best parts of which they will never tell you about.
This is not going to be the life that you’d hoped for either yourself or your child. The scary part is no one ever knows what will happen. The comforting part is that no one knows for certain what will happen either – there is always room for hope.
30 October 2009
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