Her name was Sarah.
She was a twin, and she had just the sweetest, most optimistic parents you’ve ever met.
I remember sitting in the family waiting area and her mom and dad were in there talking, and they said, “She lasted a few hours off ECMO this time before they had to put her back on. Last time she only lasted 30 minutes!”
They taught me how to look at things positively, and the value of grasping every little piece of “good” news there were, just in the few days I knew them. I called them “Sarah’s Mom” and “Sarah’s Dad” and they called me, “Annabelle’s Mom.”
I never even knew their names.
Then one day, a few days before they were going to do their last attempt to take sweet little Sarah off of ECMO, I walked into the pod after going to lunch with my husband, and another baby was in Sarah’s room. She had been directly across from Annabelle.
Sarah had gone to be with Jesus.
My heart about dropped on the floor. I cried for a very long time, the injustice of it, the fear, slapping me hard in the face.
It was the first heart baby I’d “known” who went to be with Jesus.
At that point, we’d been in the hospital just a little over a month.
By the time we went home, nine months later, I’d seen more babies pass away than I could count. Because CHD is horrible. I’ve seen doctors fight and fight and nurses give their everything. We’d go a month or two with relative quiet in the ICU, then a rash of a week or two where a cloud just seemed to settle over the whole pod, the cries of the grieving parents echoing in the halls all too frequently.
The one good thing about being in the hospital is having the privilege to be in the trenches to pray. A lot. Whenever there was a code, or doctors when running and yelling into a room, I prayed.
Then there was baby James who went to be with Jesus in December, 2010. A few months before, I’d come back to Annabelle’s room to find a mother standing just outside crying. I paused for a moment, went and set my stuff down, and gave her a hug. Thus began my friendship with Tosha (and soon after, Melissa, Anna Reese’s Momma.) The three of us snuck over to each other’s rooms, met outside the pod for much needed chocolate and hugs, and just shared life together, living in the ICU with our kiddos.
The day James’ died will be one I’ll never forget. Hugging my friend and not being able to honestly say, “It’ll be alright,” because really, at that moment everything seemed so very NOT right. Praying felt so empty that day, yet I know that Jesus was the only one who could heal the pain in the days, weeks, months, and years to come.
I know this is a lot of sad for a Monday. I’m sorry. But I couldn’t finish out CHD awareness week without telling you about the little babies and children and even adults who fought such a valiant fight.
These little ones are real, and they deserved to be
remembered. They are worth the pain in our hearts when we think about them. They are worth
celebrating the LIFE they did lead, regardless of its length.
In the end, they were welcomed into Jesus’ arms, and they are pain free, and for that I am OH so thankful! I can picture Him giving their little cheeks kisses and saying to them, “Well done, my sweet little one. Well done.”
Just to name a few of our fallen heroes, in no particular order, the ones I personally have of, either online or at the hospital (although there are a lot… and I know I’ve missed many.)
Big Girl Reagan
Big Girl Haven
Big Boy Tony
Feel free to add the name of a fallen heart hero you’d like us to remember today. And please join me in praying for the families of these sweet little ones.