In hospital room 17, amid the noise of the alarms and the endless jumble of IVs and tubing, a tiny green tree twinkled in the corner. Its warmth and sparkle provided a welcome brightness against the stark, clinical setting, a comforting landmark in an otherwise uncomfortable situation—spending Christmas in the hospital with my daughter, Ava.
In that small, sterile room, where nurses bustled in and out and monitors beeped, our family managed to celebrate the holidays. There were no stockings or cookies or caroling. No running down the stairs in the early morning hours to see the bounty of presents. Instead we sat on Ava's bed and exchanged small gifts. It wasn't a traditional Christmas, but we found happiness and humor in the situation, a skill our family has honed since Ava arrived 12 years ago.
This wasn't her first surgery, after all. Ten weeks before her birth, she underwent fetal surgery to repair a defect on her vertebrae after a diagnosis of spina bifida. She spent her first 24 hours in the neonatal intensive care unit with tiny pieces of tape holding a vent in her mouth. At 10 months, she had a shunt inserted to prevent fluid buildup in her brain. In May 2016, she had back surgery to correct scoliosis, which added three inches to her height.
All these long hospital stays and even longer recoveries at home are draining—for everyone. We've missed milestones, important events, and time with our other children. We've watched Ava endure pain and setbacks. Our experience is not something we would wish on other families, but I've come to appreciate the positive ways it has shaped our family. I see it in Ava who is bold, fearless, and stubborn. She may weigh only 60 pounds, but when she had to climb 20 stairs to prove she was ready to go home after spinal surgery, she climbed 30.
I see it in our son when he scoops Ava up after a particularly tiring day. Or when he sprints to hold doors wherever we travel and folds and unfolds her walker. I see it in our older daughter when she kneels to strap on Ava's braces, when she carries Ava's drink to the table, and when she pushes Ava down the road during a summer evening walk. I see it in all of my children when they unflinchingly endure the stares of strangers.
I see it again on that Christmas morning after Ava's bladder surgery. Instead of complaining or pouting, my children are laughing and filling the tiny room with joy and love. In moments like these, I see the greatest of wonders.
Pamela Tarapchak is the editor of an oncology journal and lives in the suburbs of Philadelphia. When not ferrying her children here and there, she enjoys writing, a good movie, and the occasional run.