It breaks my heart. Every time, my reaction is different, yet all the same. It never gets easier. It never hurts less.

“I can’t describe the feeling I feel knowing how much Karson is loved!! It’s time for an update….that, frankly, I never thought I’d have to give….
ECMO was not successful last night….
Karson went to her eternal home with our Heavenly Father…πŸ˜­πŸ’”πŸ˜­πŸ’”πŸ˜­πŸ’”πŸ˜­πŸ’”
2 Timothy 4:7–8 (ESV)
7 I have fought the good fight, I have finished the race, I have kept the faith.
8 Henceforth there is laid up for me the crown of righteousness, which the Lord, the righteous judge, will award to me on that day, and not only to me but also to all who have loved his…

-Casey Friedmeyer, Karson’s mother
We lost another Trisomy 18 child today.
And maybe to the rest of the world, it doesn’t make sense why us fellow parents lose our minds with the loss of a child that wasn’t our own. I’ve never even met Karson, but boy, did I love her. I followed her losses. I followed her wins. I cheered for her as she fought stigma and stereotype. She gave me hope.
And her mother, she was in the trenches next to us. She rooted for my baby as she hit milestones and reassured me when I felt lost and alone. And when the news of Karson’s passing hit, it hit me hard, and reminded me that maybe there is no “beating” this condition.
Maybe we can push it off, but the reality is there. My daughter will most likely not outlive me. My daughter will probably never live a normal life, and my sweet baby girl could be gone at any minute, and there is absolutely no way to accept that.
I know we are supposed to just accept the statistics. I know it’s reality and I’m being naive by ignoring the truth that hits me on days like today.
But with the loss of every child, we lose a little hope. And we hold our babies a little tighter. And we say a few extra prayers for the mother that is living our absolute worst nightmare.
I hope the world can see what Karson DID do versus what she didn’t. I want her to be remembered for fighting her ass off. I want her to be known for her beautiful smile and charming personality. I want Karson to change the way Trisomy 18 is perceived.
As my good friend Amelia (who is a rockstar in her own right by raising twins, her teenage son, her daughter with Down Syndrome, and her daughter with Mosaic T18) said to me earlier tonight, ” I want to see GEORGIA when I Google T18. I want to see Harper & BG and Karson and Fer.” You don’t know these kids, but they are to be celebrated. They are to be remembered. And they should be the faces of a community that’s been silenced and told that our kids aren’t viable for too damn long.
Karson & Casey, you didn’t fight for nothing. You changed my world for the better and the entire Tribe is aching for the loss of one of our own. In the heartache and the loss, don’t lose your light.
God bless your family and God bless Karson for paving an amazing road full of bumps and curves that proved the absolute stubbornness and fierceness of our babies. You have my heart always.

One Comment

  • Elizabeth G

    My daughter has 18q deletion but when we first were diagnosed they told me trisomy 18 syndrome and my heart sank because everything I had researched told me that my child will not live a long life. Here we are 13 months later and she’s a fighter and proves the doctors wrong each and everyday. I am praying for your family that this grieving will also bring peace to you.

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