This is my daughter Mim. The love of my life.
The beauty and cheer that radiates from her. She eats a safe food and the pleasure fills her. Her relaxed posture in a swimsuit that nary another teenager pulls off. Her fly away curls she prefers not to be touched. Her dimples that invite me to smile. Those exact dimples and model perfect eyebrows were examined as this baby girl bobbled on my lap, and the geneticist noted to the nurse these specific markers of a genetic syndrome.
The two of us are a constant pair. My older five have busily grown up and Mim and I are left here, recovering from the halt in the inertia. In the photo above, her body is ill at ease. She bites the inside of her mouth. Shoulders and neck slightly drawn up. Eyes averted. These are the signs I feel in my own body. I am her co-regulator. I see her discomfort, deregulation, sensory disregulation. I throw my own emotions to the wind and become a relaxation contagion. I give her my calm. Without words, I beg her brain to adopt my state. We are ok.
And so often it works.
But being 15 and having multiple disabilities is difficult. High school proved to have new challenges and life isn’t getting easier. Those long delicate fingers without the usual uniform spaces and creases are nibbled until they bleed in an attempt to self soothe. I see this pouty lip more often. This far away stare. And my heart breaks for her and for us. New doctors. New medicines. Same story (which is very hard to tell)over and over again. New fears.
This world, set up for neurotypical brains and non-disabled bodies, is exhausting. We retreat. A lot. Build our little fortress where her disability is welcome and her neurodivergent brain is nourished. Sharing this bed and our feelings and the very cells of our beings.
Momoirist 