Tuesday, September 13, 2011

Disability blind

I like to think that most people are color blind. We accept differences, and we do not discriminate. In the world we face there is also the question of disability blind. Are people aware of differences, or can they bypass what they see on the surface?
There was a time in my life when I tried to avoid looking at people with disability, it was hurtful, it pained me, it still does, but how different it is now.

I took Zoé to school the other day and she asked a classmate if she would race with her.
Sure enough, the little girl flew like a bullet and my Zoé kept chugging along, knowing full well that she had lost the race, but it didn't faze her, she kept running, awkwardly but not giving up.
I wondered whether Zoé was happy?
After all, she had instigated the race, she had asked for the challenge and the fact that the little girl would keep on probably made her day. We ought never to forget that it's not the destination that counts but the journey. For Zoé it wasn't the winning that mattered, just the race.
It still pained me to see her wobbly legs, her arched back and flailing arms as she followed through to the finish line down the hall.

Zoé is changing and is now more and more challenging.
"Maman, why do I have to do speech?" she is challenging the therapies. I told her so that she could make beautiful sounds, Fs. Bs. Ps, Ms. What am I supposed to say?

She no longer wants to follow her PT therapist up the ladder, down the slide. She has a mind of her own and it is harder and harder to have her follow through.

Socially, we are still working on her interaction with kids and particularly her classmates.
Kids don't seem to interest her, but again she is the youngest in her class. Could it be due that since she was 4 months old, she has been handled one on one by adults, constantly engaging her, playing with her, resorting to incredible tricks in their hats.

She lacks attention, but again isn't it age related? I don't want to sound like a neurotic mom that reads signs with everything Zoé does.

Her sleeping has changed, unfortunately, she's up at 3:30 am, then at 6:00. She no longer naps.
I actually have a window right now because I set Zoé in her room with a story on CD (Snow White) and after the CD ran its course, I didn't hear a sound ...I thought that was odd...I just peeked in and she is asleep on the floor with the book resting on her lap.
She needed that nap, and even if it's just a couple minutes, she will be more refreshed for our 4th therapy of the day at 5:15 when she goes to SNAP (Special Needs Aquatic Program). I like it how I say OUR 4th therapy of the day. It definitely feels like it.
I also worked at Zoé's school twice this week, and I like to see what goes on, as well as to work on my hopscotch skills. I had not jumped in 25 years, it's hard when you start looking at things in decades, and when it's three of them, you know you've aged!

My battle is the constipation. BM (Bowel Movements). I spend my day doing laundry, wiping poop off the potty, the floor, the tush, and it gets me soooo depressed. I know Zoé cannot help it, but I wonder when she is going to be able to do it on the toilet. I dream of that day when I won't have to slice prunes, pour Miralax in a hot chocolate, and serve prune juice at every meal. Zoé suffers from GI (Gastro intestinal) cramps, and I know what she goes through because I also do. It hurts, and nothing really alleviates the pain. It's just that the lining of the intestine is full of minuscule muscles that get all cramped up.

It's funny when I revisit that time in place when I was pregnant and I was going on that trip to Italy, or so I thought is was and I read the sign "Welcome to Holland" at birth, I never thought in a million years that I'd be where I am today. Battling a potty! Driving to zillions of hours of therapy, paining for my sweet Little Miss Sunshine (Thank you Caroline for reading the blog and referring to my Zoé with such a cute nickname!), crying in my heart about her wobbly legs, her fragile body. Thank goodness for her personality. You can read it in the twinkle of her eye, you can read it in her awkward laugh, you can feel it when she gives you the biggest hug one could ever wish for.
I need to follow the Buddha, "Live the moment", don't look at tomorrow, it will be another set of challenges, but we'll conquer those boulders, we'll charge against the odds, we'll scream as loud as we can that we can do it, hand in hand, like the best team that we are.
(Is that a pep talk or what?)
But for now, we need to live, love and rejoice.