We're off to Hersheypark, so I have a guest poster today: Dianne from Nothing But Everything. She lives in Australia, but I think we were separated at birth—we both have a very similar take on life. I'll post photos from Hershey and start telling you all about the stem cell therapy (we go to Duke on Sunday) over the weekend!
Since my son, BC, was diagnosed with CP, I have joined several online support groups for other parents of kids with disabilities. That, along with the blogging mums I have met (including Ellen, of course) has been one of the best forms of support I’ve had along the way. It’s often made me wonder how difficult it must have been for mums in our situation to find support before the Internet.
I generally find these groups to be incredibly supportive and informative, with the rare exception.
Way back when we were first starting out on our journey, I joined a support group on a website that covered a range of disabilities. A mother wrote a message to the group expressing her sadness at her child’s disability and her inability to cope.
She received a very, very irate response, not from another parent but from an adult with CP.
There was a fair bit of anger in the response, which did a lot to suggest that mothers of kids with a disability had no real right to make out that they were so hard done by. And the main thrust of the argument was this: This didn’t happen to you. It happened to your child. Get over it.
At the time I was really hurt and upset by the post. So much so that I left the group. I didn’t want to be part of a group where people wouldn’t support each other.
I’ve thought about that post a lot over the past four years with a range of mixed emotions. I can definitely see where the poster was coming from. It’s true. And it can be very good to remember that I definitely shouldn’t be sad for my son because he, in fact. is not sad at all. He’s very happy.
Mostly though, I think the poster missed the main point. It is a huge responsibility being a parent of a child with a disability.
There are days when I am exhausted by the things we are doing therapy wise or feel guilty about keeping him so busy with all the things we are doing but at the same time even more guilty about the things we COULD be doing, but aren’t. Then there’s the guilt about the time I don’t have to spend with my other son. And there’s always that concern about the future. What will it hold for my son? How best can I prepare him for it? Am I doing enough to help him become an independent, happy adult?
While most days I am mostly content to focus on how amazing, funny, clever, resilient and strong my son is, there are days that the overwhelming responsibility of it all does get me down, because even though his brain injury didn’t happen to me, he is my son, I love him and I want the very best for him. Both now and for the rest of his life.
