A few months ago, the only thing this photo would have provoked from me is a big fat crappy comparison. The leaping, joyful, world-is-my-oyster child and the Other Child. The one in the wheelchair who can’t even hold her head up against a bit of gravity. The one who will depend upon others her whole life for the most basic of movements and for eating, dressing, toileting…In this dichotomy I see a child’s body that gives freedom through the satisfaction of the landing the next log, and a child’s body that is unlikely to take any steps at all, an uncontrollable weight, a prison. Both in the same four cubic square feet. They share the same parents, will go home to the same place. Why must she be so different? So injured?
Actually I’m not sure which I find more frustrating – thinking of them as different or as much the same. When I think how similar she is to her brother, her challenges seem like a thin wall of tissue paper. It’s as if she’s right there and all she needs to do is just push through, just once, make one connection between her brain and her body to light up the whole circuit board. She seems so healthy. Her body looks so strong. It’s been over two years and we still don’t have any answers about her. Her seizures only become more mysterious and unrelenting. For all I know they haven’t even started analyzing the saliva samples we sent for our whole exome sequence. The unopened tubes are probably on a dusty lab shelf. And answers might not help her anyway. I could wail.
But I don’t have to follow these rabbit-hole thoughts anymore. Ever since meeting the mothers in that writing group, ever since hearing about their unique and exceptional kids, I’ve learned that I have another option. A more fluid, helpful way of thinking. Now I choose to let my thoughts go something like this: several wondrous things came together in this photo – her wheelchair finally arrived and now she has the freedom to cruise along and sit up like the big girl she is becoming rather than be crammed into the baby carrier that was my permanent ‘outfit,’ ha. She can face the world. And I am so pleased because it folds down small enough to fit into the trunk of the Subaru and we are able to put off buying a van for a little while longer. (The wheelchair is a Zippie Voyage.) Her wheelchair came easily onto the playground where she can smell the deliciousness of fresh cedar mulch and hear the water splashing from the sand-pit pump. This cool park was designed to allow a wheelchair onto it and I take it as a hopeful message that inclusion will be a part of the Natural Play movement (my landscape architecture plug). She is enjoying the sound of her wild brother nearby and the feel of sun on her face. Sometimes she even makes an ‘ahh’ noise which is the latest very exciting development – Lydia is finding her voice. A few months ago this photo would have been painful for me, but now I just see a fun day at the park with my two amazing kids. I see all the lucky things that have come together to make this scene and I am brimming with parental pride and joy for both of them.
I’m so pleased to say that Miss Sassypants is having some great adventures with her new wheelchair.