3 years ago today Olivia died… which is mind boggling in so many ways. Some days it feels like a lifetime ago, but most days it still feels like just yesterday.
Because I can remember so much about that final week.
On Monday, July 4th, Father Mike drove to the hospital to baptize her in her NICU bed. I dressed up her bed with holiday themed sheets, Jenny brought down a red, white, and blue baby hat from the PICU floor, and we were lucky to be able to spend time outside in the garden with Olivia.
The following morning we watched Jeanne and a team of surgeons wheel her down a long narrow hallway for her final procedure.
I remember Luke and I sitting on the couch in her room just a couple days later, seeing her entire care team congregate in the hallway. The door was shut and they lingered outside for too long. I remember knowing in that moment they were coming in with answers. But it felt so soon. Too soon. We had spent 2.5 months searching for answers, waiting. Test after test after test, most of which took weeks to return results, came back “normal”. But this test didn’t take weeks to come back. And the results weren’t normal.
On that day, just a few days before we said goodbye, Olivia’s team walked in and delivered the worst news possible. A diagnosis (previously ruled out) with a prognosis that Luke and I had already agreed was on the other side of our proverbial line in the sand.
We talked about our decision a final time, but we knew with the words Spinal Muscular Atrophy that our decision was to let Olivia go.
Family came back to Rochester for a final visit. I remember us all going to dinner, and on the walk back to the NICU with Luke I took a picture of the sky because it was a view I didn’t want to forget. Olivia’s home. The night before we said goodbye.
Saying goodbye on July 10 was hard. But would you ever believe me if I said the day was actually quite peaceful? Beautiful? Perfect, considering the circumstances?
3 years ago today we said goodbye to Olivia, but the details of that day are ones I hope to never forget.
The early morning rain.
Walking in to find cards, pictures, and bracelets from her nighttime team.
The irony that teams changed, and her very first doctor was back on her team for her final day.
A surprise visit from her very first nurse, and a final snuggle with real roses from Jeanne, because every girl deserves roses she said!
I remember the way we all laughed when Cheryl let her lick a red lollipop. The final outfit(s) I picked out, and the books we each read to her one last time. I remember bringing in a blanket my friends had gifted me at my baby shower to put over the ugly NICU couch. Because I wanted us to spend time with her in a cozy place. I remember the weight of her body in my arms, and the sweet look of her big eyes and round cheeks when she was finally without tubes and tape and life saving machines. I remember the blanket I choose to leave behind. And the comfort I felt knowing Cheryl was with her when we walked out the doors a final time. The sunshine on our drive home, and rolling down the windows. The blue sky and the first butterfly I spotted on the back deck that night.
It’s been a pretty wild 3 years, but when I think about this day and what it means, I’m thankful to actually have peaceful memories.
It was an unimaginable day, really… but it was a love filled day with our daughter.