19 years

228 months

6940 days

Nineteen years ago we stood in Room 505 of Columbia Presbyterian’s Morgan Stanley Children’s Hospital watching a bag of donor cells slowly drip into our eight-year-old son’s body. There was no dramatic music (although there was a playlist thanks to Dan). No fireworks. No certainty. Just a team of experts, a frightened family, and a process that somehow felt both incredibly ordinary and impossibly miraculous.

Looking back, I think it may have been the ultimate example of trust and hope.

Trust that the doctors and nurses knew what they were doing. Trust that a stranger’s donated umbilical cord blood cells could find their way to where they needed to go. Trust that this terrifying journey would lead us back to the future that we had always expected.

And there was hope in Room 505 — so much hope.

At the time, I thought we were hoping Jack would get back to the life we had imagined for him before ALD entered the picture. I thought we were hoping things would return to normal – normal meaning typical – what we had known. Nineteen years later, I understand that wasn’t really what we were hoping for at all. What we were truly hoping for was that Jack would survive. That he would experience joy, friendship, laughter, purpose, and love. That he would know he belonged. That he would have more birthdays.

And he has.

Jack’s life may not be the life we once imagined. There are challenges we never anticipated. Piles of medications we still can’t pronounce. There are losses and limitations that ALD brought into our family’s story. But somewhere along the way, we stopped measuring Jack’s life against the life we expected him to have. And, we started appreciating that his life might be different, but that it is wonderful. We learned to sit with reality instead of fighting it. We learned to accept – and that acceptance is not giving up. Acceptance is making room for what is true.

And once we did that, something incredible happened.

We started to be able to enjoy Jack’s life. Not the imaginary version. Not the alternate timeline. His actual life. The one filled with hockey games, family vacations, inside jokes, stubborn determination, and countless moments that make us smile. The life that has brought us friendships we never would have found otherwise, careers we never considered, and an appreciation that a beautiful life may include g-tubes and diapers. It is a life that continues to teach us about resilience, gratitude, and the power of community.

Today, after having a nice morning of TV and yard work, Jack and I sat in the back yard eating lunch. We called Anna on FaceTime and sat for a while making each other laugh. Dan finished his yard work and joined us. I filled him in on what Jack had for lunch, how much liquid he had through his g-tube, and the large poop he’d taken on the toilet. We all cheered! This is our life and we wouldn’t trade it.

Nineteen years ago, as those donor cells entered Jack’s body, we didn’t know where our story would lead. We only knew we had to trust and hope. Today, nineteen years later, I’m grateful for the trust and hope that helped us survive AND I’m also grateful for every poop that lands in the toilet.

Happy Transplant Birthday, JackO! Thank you for showing us that a good life doesn’t have to look the way we expected to be beautiful.

Love, Jess