Evelyn danced with the grace of a swan with a broken leg. Yet she watched her teacher intensely. She moved her arms up when the teacher made a large “O” with her own. Evelyn’s right arm drooped. She could only raise it high enough to get her right fingertips shoulder-height. Evelyn twirled in a circled while walking across the floor. The mirrored wall reflected the movements she and her classmates made as they chassed across the floor. Yet she didn’t look. She didn’t have to. She knew she was having fun.
Sometimes watching my daughter struggle with her low muscle tone hurts. It makes me wish that she didn’t have to deal with a body that doesn’t always do what she wants it to. I want to give her the power to jump, run, and lift her knees as high as her hip. To walk without having to circumvent her legs to compensate for the lack of hip flexor strength. I want to give her the ability to walk up the stairs without having to hold onto the railing with two hands, and to walk down without having to slow down and watch her balance. I want her to kick a ball with ease, and play her drum set with both arms equally banging on the tom tom and snare.
When my thoughts begin going there–to a place where I feel sorry for her, for me, for my husband–Evelyn makes me stop. She doesn’t know she does, but her attitude doesn’t have room for pity. And it reminds me that mine shouldn’t either.
Occasionally, she get frustrated.
“Grrrr, I’m mad,” she’ll say. She’ll cross her arms. She’ll sit on the floor. And like she has learned from Daniel Tiger on PBS, she’ll sing, “mad, I’m mad….One, two, three four.” By the end of her count, she gets up, and tries again to do whatever it was that angered her in the first place. Maybe she couldn’t stand up from the floor without hanging on to the edge of a table. Maybe she fell when trying to play catch with her purple balloon. But now, the anger doesn’t matter. She just does it.
Watching her dance in this ballet class, I see her joy. She watches her teacher, Ms. Ashley, with complete focus. She lifts her leg behind her, one at a time. She throws the stuffed monkey when Ms. Ashley asks her to. She stretches better than I could.
In these moments, I see what we have. I allow myself to let go of what we don’t. We have a daughter who was born two months prematurely, who started life in an isolette box in the NICU. We have a daughter who, despite her diagnosis of arthrogryposis, doesn’t let that determine that her joints must stay stiff, be bent unnaturally, or her limbs stay weak and useless. We have a daughter who learns fast: her alphabet, her numbers, basic arithmetic, songs, how to color within the lines. We have a daughter who has a personality bigger than my husband’s and mine combined, and who is loved by the children in her classroom and the parents of her friends. We have a daughter who is stubborn, gets an idea in her head and doesn’t let it go. We have a daughter who has a deficit, but doesn’t act like it.
My blessings are huge. My pride is even bigger. If I had been given the choice of having a child born with no physical anomalies, I have no doubt I would have taken it. But somehow, nature gives us challenges that yield big results. It gave me a child who shows me the extent of what pride can be. I am proud of her loving nature, her desire to have fun, her compassion for others. I am proud of her when she does her physical therapy exercises every night and when she wears her ankle and wrist braces without complaint. I am proud of her for loving learning and being curious.
And I’m proud of her chasse.