When we received James’s diagnosis, my scientific brain went into high gear, and I immediately started looking for resources. Everything that I read was so bleak. I saw the words “fatal diagnosis” and “incompatible with life” written over and over. I couldn’t breathe. I couldn’t believe that my unborn child was so incredibly ill. Some days, I still cannot believe it.
What I found in my searches were Facebook support groups. In those groups, I met incredible, loving parents with living trisomy 18 children. They gave me my first taste of hope. They made me believe that James might be here with us for some time.
In that time, I met Gavin’s mother – Kirsten. She was due after I was – also carrying a little boy with trisomy 18. We became instant friends and talked daily as our pregnancies progressed.
On James’s due date, we were in the hospital, and James was in heart failure. I remember so clearly that Kirsten was going in for induction. We all had such high hopes for Gavin. He’d made it to 37 weeks gestation. He seemed relatively well in utero. Everything looked good at his 37 week check-up.
It was a hard day with James, and I was distracted. I went to bed that night after checking in with Kirsten. She’d let me know that induction had been slowly started. I went to bed, hoping to wake up to that happy text – “he’s here!”
Instead, I woke up to 2 words on my phone. “He’s gone.”
I remember feeling like I’d been hit with a Mack truck. I cannot remember what I texted back, but I think it was something along the lines of “What?! What happened?!”
Sweet Gavin was born already in fulminant heart failure. Kirsten and her husband had to decide – intubate and aggressively intervene or let him go? They faced the decision that no parent ever wants to face.
And like every parent in our position – they looked to Gavin to make the decision. And he did. He told them that his little body was tired. And they honored that and let him go. The hardest, most painful decision a parent ever has to make – and they made it under the duress of just having gone through labor and delivery. No parents are braver than Kirsten and Ross. When every cell in your body screams to do everything to save your baby, sometimes you have to listen to that tiny, quiet voice – the voice of your child – telling you that they are ready. It’s the hardest, most excruciating thing in the world – to be still and listen for that.
Kirsten has stood by me through James’s life – no matter how painful it must’ve been to watch James do the things that Gavin never did – she was there, to listen, to offer support and friendship. And she stood by me when he died, and she continues to stand by me. She has been a good friend. She is the best mother to her sweet Gavin.
We should all be so lucky to have the mother that Gavin does. Keep her in your thoughts today, as this marks 6 months since her sweet baby left her arms. Six months have passed by in a sigh, and for those of us grieving our children, the days don’t get any easier. They seem so incredibly long, and then you realize that weeks have passed by in a breathe.
Love to you, Kirsten and Ross. Baby Gavin is never forgotten and always loved.