Pace Yourself

The six weeks have expired and Wednesday found us back at the orthopedists for the verdict on Willa’s errant hip. Home free? Body cast? Surgery? It was to be none of the above.

Willa will need to wear her brace for the next six months. That’s MONTHS. Immediately my brain began to whir and threw up thoughts such as: by the time this thing comes off she will have spent a third of her life in it, she will never walk at this rate, she is going to spend the long summer in a foam and plastic cast which will rot her flesh, she can still not swim…

But then there were also these: it’s not surgery, it’s not a body cast, it’s just a brace and will probably work eventually, she doesn’t even really mind it, she will need new clothes…

Which leads me to one of my many questions in all this. When you have a medically fragile child, when life will be punctuated by constant and ever-present medical issues to varying degrees, when there is no cure, no end date, no stop to the body of my daughter that insists on presenting challenges to her life and development, how are you meant to pace yourself?

I sat in the orthopedists office and was wracked by the news. Again. It was not a new feeling. Not even a merely familiar one. It was a feeling that I feel all the time now. It’s a strange sensation, sickening fear mixed with a bored aggravation. It is simultaneously visceral and mundane. The “here we go again” married to “oh my god.” And each time you have to strap the kid back into her apparatus, drive home and make dinner. It’s just life now.

So, how do I pace myself? How do I feel what I feel but not let it chip a piece out of me each time? How do I stem the flow of worry and sickening fear and morbid thoughts of death and dying? How am I to have the energy to live a lifetime of this? How do you manage to not just live your life but flourish in it? How do you not go dead behind the eyes? How do you fiercely defend your very being from your life? Or rather, how do you allow your very being to embrace the life you have, letting the new bolster the old?

Willa is one and she has been hospitalized six times. She has developed scoliosis. She has hip dysplasia. She does not eat. She is in the 0.08% for height and the 0.14% for weight. She cannot push up her head when on her stomach. She has heart problems. She needs to wear braces on her wrists to keep them aligned. She does not sleep. She almost died in surgery. She is on medication all day.

Willa is one and she has not developed cancer. She smiles and laughs. She adores her parents and throws her body at us when she sees us. She does not have Chiari malformation. She is not on a ventilator. She is able to tolerate her g-tube feeds. She is not in constant pain. She can pass toys in her hands. She can say “ga.” She is not in a body cast. She is not having surgery again soon.

Hopefully.

Each step feels like it is made by feet with the toes cut off. Each mark of progress somehow bears the mark of amputation. But progress is progress and we have made ours. And so we march on. I am learning to pace myself. Slowly.