Wednesday, October 7, 2009

Shaping our World

Zoé is at day care and I am covered in clay! I am really enjoying my new ceramics class and today I tried myself at the wheel. Much harder technique, but I loved the feel of wet clay on my hands.

Today was the first day I actually had to tell someone about my affliction. Indeed, clay is hard for me to mold and I had to ask the teacher whether the wheel would be easier on my hands than the hand clay technique.

I tend to put in the back of my mind that just like Zoé, I also have MMD. When I came home I had the Quest magazine (MDA Publication) in my mailbox, and again, a reminder of this disease.

I get somewhat down when I read it, I think I prefer to think that we can beat the odds, that science will perform a miracle, that we can conquer and achieve all our goals with tenacity and love.

I look at Zoé like my mentor.
She doesn't know what she has, she doesn't know the difference from her friends that walk. She finds ways in which she can do what she feels like, climbing, cruising and going up and down slides.

Just like clay can be molded, Zoé has shaped her own world with what she has, her ability to embrace all that surrounds her even with her physical limitations.
I like this analogy.
Even if you are limited, let's say at 50%, you still have 50% left. It's like looking at the glass half full. Full of possibilities. Our world is just different. It's rich in its complexity.

I have been thinking about applying for a handicap blue placard for my car.
Not for myself, but for Zoé.
I think I have been in denial, but I now see how it could help her.
Zoé is so motivated to walk, and loves any 'moving' toy, pushcart, walker, that if we had such a card in our car, I could pull up right in front of the door at PIP and Zoé could then "walk" in with her walker.
Why limit her to the house, and to a little stroll to the playground?
Why not open her entire world and fulfill her desire to walk.

Yesterday, we went to physical therapy and Zoé didn't want to stop after our 30 minute session, the only time alloted to her by CCS (California Children Services).
She said: "Outside" loud and clear. I couldn't believe it. I never taught her that word. I guess David did, and she was asking to walk, to conquer the outside world, to triumph against the physical limitations set before her and open the boundaries, so that she could see what it's like to walk outside, to go wherever you wish to go.

I started filling the form for the blue disabled person placard. I still need to submit it to a doctor.
But in "disabled" I see "able" and I know that, just like Zoé, I will be able to mold that clay into a mug or a vase, and she'll be able to walk to school and to daycare or the park.

It makes me think of one of the most powerful analogies in the Bible regarding our transformation, which is the analogy of the potter and the clay. The Bible says that God is the Potter and we are the clay. It is up to God to mold, transform us as we journey through this earthly life.
Our journey will be slightly different: I will hold Zoé's hand as we cross thorny and tricky passages, and she will hold Elmo's.

1 comment:

Anonymous said...

Sarah, I think this is the most beautiful blog that you have written so far.. I see Zoe holding Elmo's hand in the photo and it seems as though she certainly has a mind of her own. If she says "outside" then a new world is just around the corner on her next walk.. Go for it Zoe! Hugs, Catherine