Day # 6740 . . .

Life for all of us Torreys has been pretty great lately — full of adventure, connection, and a few unexpected surprises.

Last weekend, Mymom and I had the pleasure of attending the ALD Connect Annual Meeting and Patient Learning Academy, and as always, it was an incredible experience. Every year I walk away from it feeling more inspired, more hopeful, and deeply grateful for the community of people who understand this journey so well. There’s something so powerful about being surrounded by others who truly get it — people who share the same worries, hopes, and determination to make a difference in fighting our disease while living fully despite the challenges. ALD — shitty disease/amazing people!!!!!

But even before that weekend, life had already given us something special. The week before, Dan and I went to Italy with my parents for nine days — nine whole days! The idea of taking that kind of trip once felt impossible. But thanks to Jack’s wonderful “other family,” it was not only possible, it was a breeze. Knowing he was in such loving, capable hands gave us the freedom to relax and truly enjoy every moment of the trip — from strolling through ancient streets to soaking in the views to eating the most glorious food on the planet.

The biggest surprise came mid-trip, while we were on a boat off the coast of Sicily. We got a message from Maria (Jack’s other mother), letting us know that she had signed him up for an ice hockey team. We were stunned — and honestly, a little confused! Ice hockey? JackO? But then she sent pictures, and suddenly it all made sense. There he was, smiling, part of a team, doing something new and exciting.

The fact that Maria and her family (particularly his “other sister”, Jamilla) are always determined to make Jack’s world bigger and broader fills our hearts with gratitude. They never stop helping him find joy, connection, and experience — and for that, we are endlessly thankful. And the fact that there’s a hockey team willing to welcome and include Jack feels like a small miracle in itself. I’ve come to find out The NJ Devils are behind this — we are now their biggest fans!!!!

As we looked at those photos from across the ocean, Dan and I just sat there, smiling and shaking our heads in disbelief — not because we were worried, but because we realized how incredibly lucky we are. Lucky for community, for connection, for love that shows up in unexpected ways.

We are lucky.
We are beyond lucky.

Love, Jess