Anyone who has a child who is in a wheelchair or who will someday be considered for a wheelchair can probably relate to the wheelchair meltdown. You know, when your child is fitted for his/her first wheelchair, and you later bring it home. It looks so final, so.... well, wheelchair-ish. I've heard many stories about parents who find this to be a particularly hard time. The realization that their child is no longer a baby, no longer in that stroller stage. Many parents cry about the first wheelchair purchase. (aside from the price of it!)

I didn't really have that issue when Cameron got his chair.

Well, let me back up. Cameron got his first wheelchair quite a number of years ago. He was probably 3 or so. And, it was an emotional time for me, but more so because of how we acquired the chair. This perfect little purple wheelchair was given to us by the children's hospital. It had been donated back to the hospital by a family when their young daughter had passed away. There wasn't a mark on the chair- it had hardly been used. That really hit home with me, and still thinking about it now, I get emotional. But, we used the chair for many years and love the chair, and are thankful to the little girl and her family.

Because Cameron has a habit of sleeping during the day, he needed a set of "wheels" that reclines. The donated wheelchair didn't recline, so we happily used it in the house, but couldn't use it when we were out and about living life, or when he went to school, etc. It was recommended that we get a special needs stroller, and although I first liked it (or thought I did), I quickly realized that I loathed the thing. It reclined (which was good), but it didn't fit through doors (the wheels were too wide), and it was heavy and awkward, and it looked "babyish". When Cameron was 8 and we got his wheelchair van, we needed to upgrade to a wheelchair because the stroller didn't fit onto the ramp to get onto the van.

I was SO delighted with the new wheelchair we got several months ago. It is a Zippie (by Quickie), and it is wonderful. It stears beautifully indoors. It even does better outdoors than the stroller did. It fits through doors! It has wonderful recline options for when he's sleeping. It is just generally very easy to use. When we got this wheelchair- the first wheelchair that he would be seen in out in public, at school, etc- I wasn't upset at all. After all, he was a big boy now, too big for that darn stroller, and he should have a big boy chair. Everyone loved it, and he got many compliments on it. And I was happy.

Until today.

My husband took him into the seating place to get his headrest assessed and adapted. Mr. Cameron has a habit of sleeping in the van, and hangs WAAAAY out of his wheelchair when he does so. We wanted to have his chest straps tightened, and maybe some type of side support for his head. Well, he came home (crashed out in a dead sleep) with some contraption to hold up his head while he sleeps (I didn't like the look of it, but it would only be when he's crashed out, and I admit- I wanted one to hold my head when I napped in the passenger seat), and this awful looking head rest with these big sticking-out side supports.

I was traumatized.

I took the kids to the pool where my daughter had swimming lessons, and I felt really self consious. I didn't want to unload the wheelchair from the van and wait with the other parents and kids. But I did, then I went home and called my husband.

"I don't like it," I said. "I really don't like it. He looks disabled."

Now, I'm surprised that my husband didn't give me a big DUH on the phone.  When I told my good friend about my issue with it on the phone, she and I kind of laughed about my reaction and (duh) statement. But, I just don't like it. Somehow, the need for more supports, just makes him look more disabled in my head. Could he look 'more disabled'? He doesn't walk or talk, or use his hands really functionally. We know he understands quite a bit, but he really can't communicate his needs or what he understands to us. Isn't that pretty disabled? Hadn't this sunk into my brain yet?

My son is sweet as a button and I adore him and couldn't imagine life without him. And I know that he is "different", and I'm aware of the challenges he faces and that we face together, but I think I sometimes forget. I forget about reality. I forget about how others perceive him or us. I think that's why when I watched myself on the video I did for the donor's report for the children's hospital, where I talked about Cam and our challenges, I got so emotional. I'm used to telling the story of us, but not used to WATCHING me talk about it. I watched it and was like - wow, she (I) has a child with really significant special needs and medical issues. And I cried. I don't usually feel sad for myself. But, I felt sad for that lady I watched speaking on the video.  It was sort of an out of body experience watching myself talk about it.

It's really a very silly thing, because I know that there are people who need tremendous body support who have very fulfilling and eventful lives, and I don't think any less of them, nor do I feel sorry for them. And, I shouldn't worry about other people's perceptions.

But, at the same time, I don't like that head rest, and it WILL be changed.

Now that I think about it, I think I may have figured out part of my issue. Cameron's progression is SOOOOO slow. Almost non-existantly slow.  It takes years for him to learn a new skill. For instance, he just started to actually grab a toy and bring it towards him to play with. Took him almost 9 years to learn that skill. Needing MORE support added to his equipment is a step back (even though he doesn't need it when he's awake and sitting upright). It's just plain depressing.

Oh, and not to mention the fact that he looks "more disabled".  Yes, I'm a nutbar...

That head rest has got to go!