A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Saturday, November 19, 2011

Wheelchair Trials

Sometimes I think the wheelchair trial is not so much a trial for Nick, but as a trial for mommy.
I've mentioned that I don't want it in the house, the purpose is not for independence in the house, it's for independence outside, therefore the wheelchair stays in the car. But we want Nick to get used to it, to get moving in it. So we have to get out and about.
We’ve spent the last week out of the house every day.
Our first outing to Walmart did not go very well, Nick didn't want to be in the chair and he didn't want to push himself anywhere. When we went to the zoo he did better, but mostly I pushed him and he would go in a 5 foot area. But what I really wanted was for him to move himself more. I want him to be completely independent. Now. (Yes I know he has his own timeline...)
So we kept going at it.

I've also bought Nick some bike gloves which have really helped his poor little hands when we are wheeling around outside.
We've gone out every day to different places. As well as the zoo, we’ve walked the neighborhood, gone out to restaurants, shopped in stores and visited. We’ve been very visual.

Where ever we go, I'll leave Nick in an aisle or something and then see what he'll do. I'm trying to give him his space.
Every day we out he is starting to get more and more comfortable. He's doing well going to something he wants, now I'm just having difficulty getting him to move himself away from something he wants. Imagine that.

But I'm finding it a mommy trial. I'm finding it a bit harder than Nick is.
It's not that we are getting alot of stares or anybody has really said anything. I'm sure we’ve gotten stares, but I stay in my own little bubble and don’t really notice other people. I have had a couple people ask me why Nick is in the chair (along with how old he is). One man kept saying, "that's too bad he's in a wheelchair so young". He said it a couple of times. I've also noticed some other people go out of their way to be nice to us - which is nice.
But it's that we aren't invisible. We aren't just another mom and kids out shopping.
Now we are that mom with her kid in the wheelchair.

I know that today I am being selfish.
How can I tell Nick or Katheryn that being in a wheelchair isn't something bad, when it just makes me feel bad.
I know that tomorrow I'll feel better about it.
Tomorrow Nick will show me how much it does for him.
Tomorrow Nick will continue to show me that he doesn't think it is something bad.
Tomorrow Nick will show me that he doesn't care or notice if people stare. Let them stare - he's a rock star!
Tomorrow Nick will continue to chip away at that heavy feeling in my chest when I see how much he has to work to do things we take for granted.

I guess that's why we have trials. To learn, to endure and to overcome.

It also doesn't help that I hurt my shoulder hauling that thing in and out of the van! I can't wait until we get the lighter one to trial. Boy do I hope he likes that one better!

Sorry no pictures
I'll do less wheelchair complaining next time. Because Nick really is doing well with  it.
And he's doing well with his walking too!
Posts will come - I already have the pictures taken.


  1. This post made me cry. Not because I feel sorry for you or pity Nick (because I don't - you guys are awesome and a beautiful example of strength and happiness) but because I can feel everything you are writing right down deep in my heart. I totally know how it feels to be sad about something that SB has thrown your way - and at the same time knowing it's okay and will get better. Knowing that what your child wants/needs is most important and if they are happy we should be happy. But I also know you're allowed to feel this way friend. It's what we all go through - ups and downs - on this journey. We can't be upbeat and positive and strong all the livelong day! Somedays it's hard when we have to swallow our "SB pills" - even when we've been taking them for a long time. Hang in there! By the looks of you next post you already are. :) xoxo

  2. Huge, huge hugs. It is such a huge thing to wrap your head around, especially when you guys are coasting along slow and steady to the world of walking. Take your time. You'll get there eventually.