Tuesday, March 29, 2011

I'll tell them you are disabled...

Well, that's it, the D. word came out.
How to speak about our condition? I missed the support group for people affected by MMD-Steinert. The main topic was going to be about how we can speak about disability, how we can let others understand what we go through on a daily basis. The hurts, joys and struggles of living with a crippling disability where you muscles are slowly wasting away.
Well, I guess it just came right our yesterday.
I took Zoé to her aquatic therapy and the water looked really enticing. I told the volunteer that I wanted to go swim a couple laps in the adjoining pool and let Zoé play Ariel (The Little Mermaid) on her own with her aid.
In order to be able to swim you have to be disabled. My friend there told me she would tell the lifeguard that I was disabled.
I thanked her and said I would do it myself and pay my $2.50 fee for access to the pool.
It felt so weird. I am disabled, I need to articulate it to fully grasp what it means.
I guess now the blue placard in my card has its place. The feeling of acknowledging that I am "disabled" seems even more tangible than the plastic card I place in my windshield whenever I am running Zoé to yet another therapy session.
I can't believe I said it. It feels so strange, so out of place in my language. I must get used to it.
It has to sink in.

Yesterday was also another emotionally draining day. I took Zoé to physical therapy and because the motor room was closed and it was an awesomely beautiful day in California her PT decided to do the session in the school playground. It has a wonderful structure with different slides, ladders, balance beams, etc. Zoé worked so hard that she couldn't even do her 45 minute session, we had to stop after 30 minutes. I feel so terrible about all the demands we make on Zoé. She is not even 3 and a half and ever since she was 4 months old she's been worked, in and out. Her torso, her legs, upper body, core, abs, etc.
I cried deep tears last night as I thought of that.
It was just too painful.

Today was a short wearing day, hot hot and sunny and we didn't hide the AFOs, Zoé wore them and her fun-loving personality out-shined the fact that she had these odd-looking shoes.


Shona said...

She looks so cute in her mermaid swimsuit.

I also don't think of myself as disabled. I clearly am as I get tired so quickly, have to sit down for a rest if I have been walking a long way, my head hangs down when I get tired. Of course therefore I have a disability as these things do impact my life albeit in a small way at the moment. I feel like I don't have the right to call myself disabled though when there are people so much more severely affected than me.

Well done to Zoe for doing so well in her physical therapy. She is lucky she has a family who care enough to take her to all her sessions.

Sarah said...

You are right Shona. It was weird and strange to hear from someone else that I was referred to as disabled. Some people are so much more affected than we are. How is everything going with your pregnancy?
I wish you much luck. Keep me posted when yo get a chance!
From California

Shona said...

It's all going well thanks. I will be more relaxed when I get further along. Am still only 7 weeks pregnant, so it's very early days. Had my first scan the other day and all was fine.

Fiamma said...

I think of you as my awesome English teacher whom I was always so jealous of (and whom a lot of the girls in the class were so jealous of) because we all thought you were so beautiful and always dressed so well... (we always wondered where you got your clothes!- i think we remember seeing a lot of petit bateau (that i can barely fit in sadly... 18ans is too short...!)

i see Zoe is getting your sense of style... She's one lucky girlie! Go zoe!
Love, Fiamma

Anonymous said...

"Disabled" is just another word for someone who does things a bit differently.
I don't think you need to worry about struggling with the word because you are a beautiful woman, a brave person and very intelligent.
You have and will continue to be an inspiration to all who read your blog and to the people that you come in contact with each day as Zoe grows up.

When you feel down, just remember that others and your friends admire your accomplishments and most of all, the fact that you are a fantastic Mom!!!