Three weeks ago it was Oscar who was struggling with anxiety around the surgery. He was full of questions from breakfast till bedtime. “I’m worried it will hurt.” “How long will I be in the hospital?” “Who’s coming to visit me?” “When can I eat again?” “And the worry that lasted one entire week: “What if I grow so much my favorite t-shirts don’t fit anymore?” Because Oscar’s curve keeps worsening, his growth over the last couple of years seems to have been gobbled up by the scoliosis. He’s still wearing shirts he got in 6th grade…and he’s gotten quite attached to them. One afternoon last week he emptied his drawer and tried them all on, trying to assess if an extra two inches of height would land them in the Goodwill pile.
I tried to answer each question as nonchalantly as possible. Some conversations ended in tantrums — the food, the t-shirts — but he always recovered. I made sure he didn’t overhear me talking to friends about whether he might need fusion surgery too. I played up the amount of time he’s going to be getting to lie on his grandparents’ couch recuperating. “You’ll get to watch as many movies as you want! All day!” Relief would wash over his face and he’d return to his math homework, or his game, till the next question popped into his brain.
This week he seems calm. He’s been getting off the school van excited about a new game his friends are teaching him. He’s flexible and relaxed, showing only minor disappointment when his homework load prevents him from getting his full half hour of screen time. He doesn’t complain about the long carpool trips to pick up his brother and friends from practice, and he’s in on the banter as we slog through traffic back home. He’s paying attention to the political scene, asking questions about caucuses and primaries and sharing his (strong!) opinions about the candidates.
But, me, I’m a mess. I’m worried about keeping ahead of the pain, and how the meds will affect his already slow intestines. I’m worried that there’ll be complications or infections. I’m worried we won’t sleep, that we’ll wait in endless lines for x-rays, that the hospital won’t understand Prader-Willi syndrome, or that they won’t trust that I do. My tongue is numb and my lips are tingling. I can’t sit still. I’m distracted. I know we’ll get through it…I just wish we were through it now.