Day 76: A First Birthday Spent in the ICU

[A journal entry from a year and a half ago, written before whole-genome testing — when we’d spent over six months searching for a cause and were closing in on three months in the hospital as his first birthday arrived.]

Day 76 in the hospital.

Today is your first birthday. We brought a cake and a tiger-god hat into the ICU to celebrate with you. Out of twelve months, you spent close to a third of them in the hospital. You must have been so lonely. I’m not strong at all, Mom isn’t — thinking about how much a baby this small has had to endure, I cry more than I’d like to admit. Thank god the new job kept me busy enough that I couldn’t spiral. Thank god your mother is stubborn enough not to let a shred of it show at work. Thank god you kept fighting through every close call.

You licked a few crumbs of cake off your fingers, looking amazed, and gave us the smallest smile.

The ICU only opens for visits three times a day, half an hour each. The newborn in the bed next to yours had brain surgery, but I never once saw anyone come to see him — turns out he’d been abandoned. The baby girl on the other side had heart surgery and went home with her family within a week; you still had weeks left. Every time I saw another baby your age, healthy, I had to look away and remind myself not to compare.

Because you are the most singular child in the world — mine.

So often, people’s questions come from care, but they land as pressure — explaining and re-explaining the same thing, fielding the same doubts, is exhausting. I want the answer to everyone’s “why” as much as they do. But there isn’t one. You’ve been poked and scanned and dragged through every major hospital — you have to believe we’ve done everything we possibly could.

I joined a LINE group with other families going through something similar, and found more understanding there than almost anywhere else. Finally, I didn’t have to keep answering everyone’s endless questions, suggestions, and unsolicited advice.

I wonder if you’ll dream about how good that cake tasted tonight. The nurses say you smile in your sleep — maybe you can feel how much we love you.

Happy birthday. Staying healthy is the only wish that matters. We made a promise: we’re all going home together.