One year. 365 days.
Today marks one year since our world changed again and Evelyn became a hospital kid.And what makes this day especially emotional is remembering how this all started.
Evelyn was the one who told us something wasn’t right. She advocated for herself. She asked us to take her to the hospital because she knew her body wasn’t feeling the way it should. I listened to her because I knew my girl knew her body. But never in a million years would I have imagined that listening to her that day would eventually lead us here, to a transplant journey, to a Berlin Heart, and to a year spent waiting for a new heart.
A year ago, we came to the hospital thinking we were facing another difficult chapter. We had no idea just how long this chapter would become.
In the last year, Evelyn has faced more than any child should ever have to. She has endured procedures, setbacks, countless medications, Gi bleeds, respiratory failure, failed intubation, long nights, painful moments, and more uncertainty than we could ever put into words. We watched her heart become incredibly sick. We watched her spend months on IV medications. We watched her become critically ill enough that we had to make decisions we never imagined we’d have to make. And eventually, she received a Berlin Heart and became completely dependent on a machine to keep her alive while we wait for her new heart. And somehow, through all of it, she is still just Evelyn.
She still laughs. She dances. She makes crafts. She sings. She wins Bingo. She makes us do runway shows outside. She gets excited about surprise visitors, mail, and Child Life activities. She complains about hospital food, and begs for door dash. She makes us laugh when we desperately need it. Those little moments have become some of the biggest moments of our year.
There have been days when 24 hours felt like a lifetime. Days when we were terrified. Days when we were exhausted. Days when we watched other families get the news we have been waiting so desperately for. Days when it was hard to understand why we were still here. But when you live in an ICU for this long, you see things that change you forever.
We have witnessed the greatest gift a family can be given, the gift of a second chance at life. We’ve watched parents receive the phone call they’ve prayed for, watched their children get their new heart, and watched hope walk through the doors.
And we’ve also witnessed the days that represent a parent’s worst nightmare. We’ve seen families leave without their child. We’ve watched parents experience a kind of heartbreak that no parent should ever have to know.
When you live in the ICU this long, you carry both of those things with you.
You carry the hope.
You carry the heartbreak.
You carry the miracles.
You carry the fear.
And somehow, you learn to keep walking through all of it and appreciate.
We have watched Evelyn get stronger. We have watched numbers improve that we once weren’t sure would ever improve. We have watched her come off medications we thought she’d never be able to come off of. We have watched her learn to live with the Berlin. We have watched her find pieces of normal childhood in a place that is anything but normal.
And we are still here.
Still waiting. Still hoping. Still believing that somewhere out there is the chance that will bring our girl home.
A year in the hospital is something I don’t think any parent should ever have to understand. But this year has taught us that progress doesn’t always look like going home. Sometimes progress is getting outside for 20 minutes. Sometimes it’s a good lab result. Sometimes it’s laughing with your nurses. Sometimes it’s making it through a hard dressing change. Sometimes it’s simply waking up the next morning and doing it all again.
So today, we aren’t celebrating a year in the hospital. We’re celebrating a year of Evelyn fighting.
A year of her teaching us what strength really looks like.
A year of her finding her voice and learning to advocate for herself, even before we understood just how important that voice would become.
A year of nurses, doctors, therapists, Child Life, teachers, family, friends, and so many people loving our girl alongside us. A year of tiny victories that have added up to something enormous.
And most importantly, a year that Evelyn is still here.
We don’t know how much longer this wait will be. We don’t know what the next chapter will bring. But we know our girl is ready. Her doctors have reminded us that she is in the best possible condition to receive her heart, and now we’re just waiting for the right one.
So here’s to 365 days.
365 days of fighting.
365 days of waiting.
365 days of hoping.
365 days of loving.
365 days of choosing to keep going.
And one day closer to bringing our girl home. 
How You Can Help
Your generosity to COTA for Evelyn’s Heart and constant rallying for Evelyn means the world to our family- thank you!
Get your “Hearts for Evelyn” T-Shirt
Join our “Hearts for Evelyn” Facebook Group
What makes our partnership with COTA so great is that they will be with Evelyn throughout her lifetime. Every dollar donated to COTA in honor of Evelyn goes to transplant-related expenses. Thank you for being here with us for Evelyn.