In the same way that I find nothing redeeming about the fact that my son can’t have good friends.

We are fortunate in that Ben is able to have joy in his daily life — to laugh exuberantly, to watch his favourite shows or play computer games, to ask me (in sign) what I want for Christmas, to help wrap presents, to enjoy hugs. They are limited things compared to a typical child his age, but he has some quality of life through this (a different quality of life, but not necessarily “less” quality of life). If he had medical conditions (like seizures) that stripped these joys from him and destroyed his spirit, I don’t think I would have the same feelings about acceptance.

I know I may not use the terms correctly, but in my mind life-threatening medical conditions that cause pain are different than physical or intellectual impairment (or disability) that doesn’t change over time — in terms of their impact on quality of life. I think when people talk about not wanting to change their child, it’s often in reference to a physical or intellectual disability that is static over time, and has simply become a part of who their child is.

One of my most favourite sayings is in a body scan by Jon Kabat Zinn — “Let go of the tendency we all have to wish life was different than it is right now” and something about accepting your situation and yourself exactly as you are. It doesn’t mean you have to be happy with life exactly as it is, but that you give up internal fighting and resistance that is so destructive. It’s like a huge relief, just to accept that this is what is.

I started a post on Friday and part of it was about reading a book called The Child Who Never Grew — about raising a child with mental retardation. And in it she says something about wishing a thousand times over that her child wasn’t born with her disability. And it may be that my feelings have changed over time, but I can’t say that I have those wishes now. There is something abotu the essence of Ben that is tied to his unique challenges/way of being. In saying that, I’m not saying that I don’t wish he didn’t have physical pain (of course I don’t want him to experience physical pain!) — but there’s something about his personality and spirit that would not be the same if he wasn’t the package of attributes that he is.

To say that I wished he was born “normal” feels like a betrayal, or that I somehow feel he is of less value in this package. For all of his challenges, he also has aspects of his personality and spirit that I believe are enhanced and refined by his unique perspective.

In my mind, Ben and his journey are tied together — another child without that journey would simply not be Ben.

Perhaps this feeling is unique to having a child who is born with their disability — it is simply the way they have always been. I’m sure it’s a very different feeling when you have a healthy child who acquires a disability.

To say I wished Ben was any way other than how he is (in terms of his abilities), would be like a loved one telling me they wished I could change the essence of who I am (again, I’m not talking about physical pain here — I’m talking just about different abilities and strengths).

Thanks for helping me think this through more.

No point really. Just saying :)