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.