If you look to the right of this column, at the sidebar where my links are housed, you'll see one there for CAPPS, an extensive and valuable resource for anyone dealing with craniosynostosis and also plagiocephaly. Ironically, I didn't use the resource much until after my own daughter had undergone surgery to correct her metopic craniosynostosis. I lurked, of course, on the site, but I was almost afraid to commit myself in any way to the discussions.
What was I afraid of? Confronting the anxiety and fears we felt as her surgery approached? Was I afraid of articulating the worry, the cold dread? Of putting down in black and white the unspeakable fear of the unknown that visited at night, and perhaps, in doing so, make the worst come true?
Now when I visit the site, five years later, it is filled as it is every day with posts from worried and fearful parents like we once were; parents with newborns who have just been diagnosed; parents who are marking the days until surgery, or who are navigating those difficult and lonely hours, days, weeks, and months post-op. I recognize myself in many of the stories, and in the questions: should I wean before surgery? (I didn't) or will that scar show forever? (No, it will be hidden by hair). In the photos parents post of their babies newly post-op, their puffy heads encircled by that raw ear-to-ear zig-zag scar I see T., at 6 months old, both painfully vulnerable, and yet brave beyond words, as all those children are. I see myself again, bent over her swollen head, q-tip in hand, cleaning and tending, and tending and cleaning, and counting the days until the salty-antiseptic smell would leave her hair, and the sweet powdery baby smell return.
Mercifully for most, the journey from diagnosis to surgery to recovery to full discharge from medical care is a smooth five-year process. For us the road was a little bumpier--when T. was eight months old we discovered she was having mini-seizures involving head pain. Numerous specialists (and one MRI and three CT scans later) later, her neurologist diagnosed her with a type of paroxysmal migraine seen in small children. T. also grew (and still does) at a glacial pace, which led to lots of other visits to specialists in fields with long names. There were moments when the future seemed terribly uncertain, and moments when we breathed easier, as we crossed yet another worry off our list.
On Thursday last week I taught my morning class, met with several students, then drove to T.'s school to pick her up at lunch time. We drove forty minutes to the hospital where T.'s surgery had been performed, back in 2004, and met for what I hoped and hoped and hoped would be the last time with her surgeons. Most children are followed for five years post-op, and this was T.'s five year appointment--a big milestone. I didn't expect anything to be amiss, but sometimes when you spend so much time holding your breath, you end up always on guard.
Twenty minutes after meeting with T.'s doctors we were headed away, past the waiting rooms with too many sick children, back down the elevator past the enormous fish tank, past the front lobby where a bald-headed girl waited, tucked close into her father's arms, out through the automatic doors, and into the rainy afternoon. T. clutched her "graduation" present from the nurse--a stuffed webkinz--to her heart to keep it dry. Only then, as we stepped outside and I felt the misty rain on my skin, did it hit me that we'd made it: that we'd reached a tremendous milestone that five years ago seemed so distant, seemed such a small faraway point we could barely see through the mess of worries.
We'd made it.
I loaded up T. and her new stuffed animal into the van, handed her a cereal bar and her thermos of water for the ride back, and I let myself cry a little as I pulled out of the garage--pent-up tears of relief for T., and for us; tears for those parents whose journeys through the next five years are just beginning; and tears for all those children back at the hospital, the ones who can't just walk away the way we did, stuffed animal in hand, out into the rain, and into the rest of their lives.