Finding purpose through pain
Written by Kassi on Jan. 30, 2025
A week ago our world absolutely shattered. We handed our three-month-old over to a nurse at 8:15 a.m. for her scheduled open-heart surgery. Twelve hours later we were rushed into the pediatric intensive care unit to spend Daphne’s last moments with her. My husband, Connor, baptized her moments before she peacefully passed away in our arms.
To say we are gutted is beyond an understatement. We have so many questions that we might never have answers to. Through it all, at the end of the day, we genuinely believe her surgeons, doctors and nurses did everything they could to save her. And she fought so incredibly hard.
Daphne’s CT scan the week prior confirmed a rare congenital heart defect called cor triatriatum, amongst her already-diagnosed CHDs. Her surgery was supposed to be a relatively quick and seemingly easy procedure, but it turned out there was so much more going on with her little heart than anyone realized.
There are so many layers to this new, horrific nightmare we’re living, particularly for me.
The pain of losing your child is nothing anyone can prepare for. Daphne was – and is – such a huge part of my existence, and the emotional and physical pain without her is jarring.
My body doesn’t know my baby isn’t with me anymore. And as an exclusively breastfeeding mom, it’s a lot of emotions to navigate around pumping and what to do with my milk supply. Our breastfeeding journey was one of the most incredible journeys I have ever been on, and I feel as though I’m grieving that loss almost as much as grieving the loss of my child. Daphne was a rockstar at nursing from day one, and she was the best baby to have as a partner for my first breastfeeding experience.
She is everywhere in our house. From the nursery full of hand-painted flowers to the pack-and-play holding her blankets and nursing pillow. The small reading room off the dining room that was converted into a playroom complete with a bookshelf full of her books and a changing table that she loved to kick around and smile on. Her stocking still hangs on our mantle and the Christmas lights are all still up – one of her favorite things to look at. And man, the ceiling fans… she would talk to and smile at them all day if she could.
Daphne very quickly became our center of gravity. She brought a sense of focus and balance that we didn’t know we were missing. And without her, we feel like we’re just floating aimlessly through the grief.
This last week has felt like one horrific nightmare of a day. I still feel like I’m just waiting for my baby to come home. That we’re going to get a call and be told “she’s okay, come get her.”
I really don’t know where we go from here. All I do know is that we will say her name. We will grieve the time we never got with her, and celebrate like hell the best three months we did have with her.
We’re finding ways to make purpose of the pain, because this is now how we get to take care of her and show up for her as mom and dad.
