Everyone always tells Damon how positive he is. And he is. That’s not a performance — it’s genuinely who he is, even now. But somewhere along the way, I think people started to hear “positive” and translate it into “fine.” Like being positive means you don’t struggle. Like it means every day is survivable in the same way.
It doesn’t work like that. Positivity and struggle aren’t opposites. You can hold both at once — and most days, we do.
There have been moments in this journey that we didn’t post about. Not because we were hiding them, but because when you’re in the middle of them, you’re not thinking about how to tell the story. You’re just trying to get through the day.
When we were denied the first time
Before Damon ever made it onto the transplant list, we went through the review process…and he was denied. After they presented us with the option, and got our hopes up, hearing no felt like the floor dropping out. There’s a particular kind of hard day where you’ve done everything right, followed every step, and the answer is still no. On those days, it’s hard to see a path forward. Instead, you just see the wall in front of you.
When the infection hit after surgery
Later, after a surgery that was supposed to be a turning point, Damon developed an infection. We had let ourselves believe the hardest part might be behind us. And then it wasn’t. That’s one of the cruelest patterns of this kind of illness: the setback doesn’t wait for a good moment to show up. It comes right when you’ve let your guard down enough to hope.
What gets us through
I won’t pretend we have some formula for getting past those days. Mostly, we just keep going. One appointment, one phone call, one day at a time until the fog lifts enough to see a step forward again. Sometimes that step is small. Sometimes it’s just getting through until tomorrow.
What I want people to know is this: you can be a genuinely positive person and still have days where you can’t see the path out. Both things are true. If you’re a caregiver, a patient, or someone supporting a family in crisis — and you’ve had one of those days — you’re not doing it wrong. You’re just in it. And being in it doesn’t cancel out the strength it takes to keep showing up.