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!

Our very own jaguar

After our monthly mom and baby SB group we came home with a little surprise!

This is called a castor cart. It is nice and low to the ground, and allows Nick to move himself around at a speed an almost 2 year old should be going!
He hasn't gotten the speed of it yet - imagine that - my cautious little boy is taking his time.

Katheryn thought that Nick's new car was great too.
Whatcha doing back there? You'd better not be messing with my wheels!

Every new set of wheels needs an emblem.
What do you think?

Nick's jaguar!

Here is Nick and Katheryn trying out the new wheels!

Sisterly encouragement - Take That spina bifida!

Finding the right fit

We had some more walker try outs this week.

This one was a 'no'

It has the arm supports up high like what we want, but it was not very stable, or very wide.

Nick was very crunched in this walker and could pretty much sit on the edge of the walker and not do anything.

A little problem solving and adjustments were made for Nick.

This one worked alot better - except that it was way too high. We hope to adjust this - just waiting for approval, because it will be another loaner.

But it gives him the higher arms we were looking for - because Nick doesn't like walking in the regular walkers, because his arms are so low. He likes having his hands higher when he walks with me. I think it is because of poor balance and feeling safe. So we will continue to work on that.

We've been trying to find the right fit for Nick. But I think this is a good starter model that will work for Nick. It is light, not too fast, will get him used to walking in the walker. Because I know he can!

Back on the phsio track!

So Nick hates physio,

he wants to crawl around on the floor all day, every day. He doesn't want to climb on the couch, or stand at the couch, or cruise, or walk, or go in the walker. We've taken a little bit of a break, not necessarily a break, so much as a hiatus, a vacation.

But now we are back on track. First order of the day?

Balance

(I got Katheryn to take this picture for me)

Nick really hates this. He isn't stable and he hates feeling wobbly.

But Katheryn (as usual) provided some more entertainment than the usual tv (even if it was Backyardigans)

That got a smile!

Which really meant that everyone had smiles!

And then it was Katheryn's time to help with some physio.

I know neither of them look very impressed - but they did like it (for a minute or so).

I'm hoping the new physio partner will help with motivation!

Splish Splash

Baths are a big thing in our house. I have some water babies – am I surprised? I would spend half the day in a bathtub if I could! Katheryn eats dinner then announces to the house “Who wants a bath?!”

I talked about bath time earlier this year. And Nick hated his baths. He had a bath ring to keep him upright. But he's been too big for it for a while now. I've been putting Nick in the bath without the ring, but he just wasn't able to hold his balance in the water.

I talked to the occupational therapist in June about something we can do to help. Because I tried multiple times through the summer to put Nick without the ring and he just wasn't able to keep himself upright. So we had someone out to the house to show us some stuff that was available. (I was also looking for support on the toilet).

This minnow bath support was what he brought to show us.

It looked good, if we needed it. But (and this is a big but) it is big. It would give Nick lots of support so he could have a bath... by himself. There wouldn't be enough room for Katheryn in the tub as well.

So after 2 months of humming and hawwing if we wanted to get this, our insurance agreed to paid for it.

But I really was uneasy about getting something that would interfere with Katheryn and Nickolas play time together.

So before putting an order in for some kind of equipment, I wanted to try keep trying Nick in the tub.

And success!

You'd think I would have had more than just my camera phone!

And he's only getting better!

He is loving the ability to move around in the bath tub!

To be where the action (aka water) is!

Katheryn really likes that Nick is more mobile.

She's also notices Nick's scar on his back, she was kissing it and saying he needs a bandaid. It was a bit of an opportunity to talk about it, but she went on to playing hippopotamus and wasn't listening to what I was telling her.

Hippopotamus? You ask.

See the similarities?

In the meantime Nick has discovered the joys of exploring the bathtub.

And he keeps trying to stand up and reach things outside of the tub

I should mention that he proceeded to fall out of the tub and onto his head immediately after I took this picture!

But everything was good! Mommy was a little shaky! But Nick thought it was fun!

Sometimes I forget I have an almost-two year old on my hands!