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!

Sunday, October 9, 2011

That word

They have used that word with my child. They are starting to think that it is time. It caught me completely off guard.

A wheelchair.
For my child.

My child in a wheelchair.

Yes I know why, I do. Independence.
But it’s still a shot in the gut, a slap in the face, a slewfoot. Can we give penalties and take 2 minutes? (Yes hockey season has officially started again – and my Maple Leafs are 2 – 0).

I see other kids in wheelchairs and the independence they gain. They don’t have to be with mommy all the time, they want something over there? They can go and get it. I know he will love it. I know it will be great for him.
I know all of these things, but for me, today, right now. It’s a wheelchair. For my child.

So let’s step back a sec.
Where did all of this come from?

On Thursday, we had our mom and baby sb group. We came home with a  castor cart (sorry, his jaguar). But before that Nick had been fussing, he is cranky and not feeling well. So I put him in his stroller hoping he’d fall asleep.

Now, Nick is a big boy. He is tall, he is big for his stroller.  He is also almost 2 years old. Do 2 year olds want to go wherever their parents want them to go? No way! They want to do things their own way, make their own mistakes and figure things out, on their own.
So put this all together, and the OT and PT at the baby group felt that it was time.
I am so lucky that I was a little pre-warned. Another mom heard what they were saying and warned me. Our group is 1 hour of parents, kids and therapists, then 1 hour of the parents leaving to talk about a specific topic. So at the end of the group when we discussed that when we meet next month we’ll look at getting him a wheelchair (it just makes me cringe writing that) I was a little bit more prepared. No tears, no sad face, I could put on my analytical, I understand and agree, face and not my emotional, mommy screaming not yet, face.

It was one day at group this year (When Nick was 18 months old) that it even occurred to me that he would need a wheelchair as a child. In my mind I was thinking 3 years old. That was my plan in my mind. That was my timeline.


I spent the entire drive home going over and over with myself why this is a good thing. Why this is actually a blessing. So I was prepared when I brought the topic up with Kyle. I was prepared when he asked the question that has been haunting me.
“Doesn’t it feel like we are giving up on his walking?”
No. Never.

I will Never give up on his walking. This is not about walking. We will still work just as hard on his walking, his walker, his mobility. We will concentrate on physiotherapy and conductive education and anything else we can get our hands on just as hard.
But, this is about his independence. Those times when he is in a stroller, just sitting there, being pushed around by mom or dad. When if he had his own wheelchair (smaller cringe) he didn’t have to rely on us. It would only be in replace of the stroller. It would not be in the house.

When we go to the mall, when we go to the park, when we go to the zoo. Can you just imagine how much fun he will have at the zoo?! Going where he wants to go, instead of being pushed around all day in a stroller or a wagon. I can’t wait!
Wait a second, did I just say that? I can’t wait to get him a wheelchair. I can’t wait for a wheelchair to give him independence. Did I just type/say wheelchair without the cringe? I want what is best for my child, and even if I have some hold-ups about a wheel chair – he won’t. He won’t see it as something negative (unless I tell him it is). He will see it for what it is – freedom.


Here are some kids that have really inspired me. And I don’t think I would be so calm about the wheelchair if they hadn’t gone first.
Kingsley
Carson (he is just a day or 2 old than Nick)
Alex
And I can look at some of the older kids
Like Caleb
And Madi

I am missing so many more. But for family and friends who want to see what a child in a wheelchair looks like, can look back. Because it is not sad faces and sickness. It is smiles and freedom all around!

5 comments:

  1. You wait. Just wait. One week with it and you'll look back on this post and shake your head with the knowing smile. You know it now, too. ;) We have to return King's trial wheels this week and I'm so bummed. It has made SUCH a difference. He actually puts his hands out, reaching for wheels, when he's in the stroller. He jumps out of my arms to get to his wheels so he can go do what he wants to do. It's like the freedom of giving your young adult a car! They're still going to walk ;) but the car gets them further. So much more of the world to see when you can go so fast!

    ...And wheelchair shopping is kinda fun. I'm focusing on all the critical elements like colour and flashiness, naturally. :)

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  2. I just think this is a natural thing you have to do. It's going to be awesome, but you have to grieve a little and work through this in your head a little before you can move on to how great it is.

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  3. Caleb was almost 2 when we started the wheelchair process and 2 1/2 when he finally got the chair. I didn't realize how much he hungered for independence until he got his chair. The change in him was night and day. He was social and confident and so happy. And even now, at 6 years old his wheelchair still brings out the best in him, he is more confident in his chair. He likes it. Without a doubt, the best thing we ever did for him. And it doesn't mean that you give up on walking, Caleb is walking far more now than we ever expected, his wheelchair did not and has not hindered his walking at all. Just make sure you get the light up caster wheels in the front, that is a wheelchair must have!!

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  5. I am continually amazed, inspired and encouraged by my beautiful friends who share this journey with me. We may take some different paths here and there - our kids are all different therefore our road is a little varying sometimes - but our destinations are all the same - happy, healthy, independent lives for our little ones. We all want normalcy - but are exceedingly blessed by a sense of perspective and a deep appreciation the little things. We love our children. We advocate for them and cheer for them and cry for them - all the while they are usually much more relaxed about the whole thing than we are. ;) And that's a beautiful thing. I am excited along with you for Nick to reach this next stage of independence - all the amazing sweeties who have gone before him are loving it! And none of them are stopping there - all of our little ones are constantly striving, growing, changing, adapting and reaching new heights and new potentials every day. :) Sending big hugs and "go get 'ems" your way!

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