Five Things I Wish I Knew Before My Son’s Liver Transplant
When I first heard the words “your son needs a liver transplant,” I had no idea what lay ahead. It felt like we were about to walk into a storm without a map. Sure, we had a binder filled with information—our team at SickKids made sure of that—but no amount of paperwork could truly prepare me for what was coming. I wish I’d had a tour guide, or a set of MapQuest directions—something to hold onto when the world felt like it was spinning.
Here are five things I wish I’d known before Myles’ transplant:
1. The waiting is its own kind of hard.
I thought the surgery day would be the hardest part, but no one tells you how heavy the waiting feels. Waiting for labs. Waiting for tests. Waiting for transport back from those tests (IYKYK). Waiting for “the call.” Every day felt like we were holding our breath—and that takes its own toll.
2. It’s okay to ask every question (even the scary ones).
At first, I didn’t want to ask questions because I felt like I should already understand what they were telling me. But I’m not a doctor. I was a first-time mom who was six weeks postpartum when Myles was diagnosed. You have to remember: this is your child, your journey. Ask the awkward, complicated, emotional questions. You deserve answers—and you’re your child’s best advocate.
3. You won’t just be a parent—you’ll become a caregiver.
When your child is sick, parenting takes on a whole new meaning. It’s not just sleepless nights and diaper changes—it’s medication schedules, coordinating appointments, tracking doses, calling pharmacies. While other parents are heading to the park or beach, you’re making sure syringes are ready and homecare kits are stocked. I wish I’d known that this role would go far beyond motherhood—it’s caregiving in the deepest sense, and it’s a full-time job on top of being a mom.
4. The medical world will become your second home.
There’s a language, a rhythm, a routine to hospitals and clinics that no one prepares you for. It’s culture shock at its finest. But then—suddenly you know acronyms, lab values, medication schedules. It’s overwhelming at first, but you’ll find your place.
5. You’ll find hope in the smallest moments.
A stable lab result. Finally getting to hold them after days in the ICU. A quiet night without alarms. A barista writing “you’re strong” on your Starbucks cup. The moments that keep you going aren’t always big milestones—they’re the little victories that remind you why you’re fighting.
🌿 If you’re a parent waiting, watching, hoping—I see you. I hope this helps you feel a little less alone. And if you’ve walked this road too, I’d love to hear what you wish you’d known.
💚 Thanks for reading. Feel free to share this post with anyone who might need a little encouragement today.