The space it left - FamilyEducation

The space it left

October 04,2011

This weekend I found the time to undertake one of those silly, household tasks that I derive too much pleasure in: I cleaned out one of the cabinets above the washer/dryer in our laundry closet. I've been eyeing that cabinet for some time now--it stores stacks of folders containing medical information of T.'s from years and years ago. One contains the CT scan pictures of her skull, before and after her surgery. She was only six months old when the scans were taken and her skull is so beautiful--for a skull, that is. In the first three pre-surgery scans you can see that something isn't right. Instead of a normal suture opening at the front of her skull, T.'s forehead is marked by a prominent ridge running from her hairline down to just above the bridge of her nose. If I close my eyes I can feel the ridge under my fingers, as I felt it all those hours I rocked her in the glider after nursing. I'd trail my fingers up and down her forehead, and try and reconcile the words "birth defect" with my daughter's sleeping face, with her lightly veined eyelids, closed tight, and the lovely curve of her baby cheeks.

The second set of scans is more disturbing, I think, than the first three. These are her post-surgery pictures, and her forehead is clearly held together by dissolvable screws and plates. There is an artificial suture line now--it looks like a black crack running between two pieces of bone at the front of her skull. I can look at the image and still feel the contours of the plates and screws under her delicate skin. One day they disappeared, just as her surgeon said they would-- melted away, as if they had never existed at all.

T. caught me looking at the scans, when she came to find me. I swallowed the lump in my throat before I turned to her, and thought quickly about whether or not to shove them away, out of sight. But T. loves all things medical, and enjoys examining books about the body, and biology, and I was too late.

"That's a head!" she said, when she saw the light shining through the underside of the scan, illuminating the picture of her skull. "Whose head is that?"

"It's your head, T.," I told her. Her eyes grew wide. We told her about her surgery last year, and we talked about it again this summer, after my little nephew was born, and she had the chance--for the first time--to see and feel a newborn baby's round little head. But she'd never seen the pictures, and I was worried she might find the sight of the inside of her head disturbing.

"That's MY head?"

She laughed nervously.

"Not many people get to see the inside of their heads," I told her. "You're lucky!"

We sat on the floor together, by the laundry closet, and looked at the pictures, and talked about them, until we were ready to slip them back inside their brown envelope. I had often thought about this day, when T. was just a baby in my arms, and I would walk her to sleep, in the dark kitchen. There were some nights--exhausted, worry-filled nights--when it was too dark around me, and I couldn't imagine the moment; when I honestly worried about whether or not we'd ever get there. I lived for almost two years with terrible fear, lying curled up like some heavy weight inside of me. I don't remember much of that time, yet I know I got up and went to work and came home and somehow juggled it all, the fear always still there. After T.'s surgery, when it was all supposed to be behind us, she began having seizures and headaches and we waded through endless specialist visits, and more scans, and a brain tumor scare, and just a mind-boggling number of maybe-diagnoses and prognoses, and what-ifs, and in the end here is T. today, as beautiful and resilient a soul as you could ever meet.

It's funny how you don't truly feel the sheer weight of fear, when you're living through it. But afterwards, when it lifts, the space the fear took up never quite fills in again; it becomes a part of us, a permanent reminder of how good the here and now is, how lucky we all are to be on the other side of it all.