This isn’t a post I ever wanted to write. But we’re going to be real, we have to hold both the joy and the heartbreak. And the truth is, sometimes the worst happens.
As I researched and embraced my new role of heart mama (because I fully and ferociously chose our Jewels knowing fully what her diagnoses held), I avoided every mention of loss, stats regarding mortality rates, resources for bereaved parents. I didn’t want a flicker of those thoughts in our space. No chance that we would think it into existence. Still, despite the endless layers of love, hope, prayers, science, confidence, medical knowledge, grit, support, willingness and wishes, sometimes a CHD journey ends in the unthinkable.
And for our precious, happy, beautiful, wonderful Jewels, it did.
Our Fight
She was all joy and fight wrapped up in one precious, tiny body. I absolutely knew that she would pull through and beat the odds. As we spent the beginning of 2025 back in the CICU (after three beautiful months at home), as I fought with every fiber of my being to get her transfered to a new hospital, as I pushed all the decision-makers hard to see the whole picture when deciding if she would be a transplant candidate, as we beat every obstacle the hospitals, the foster system, the universe and her body put in our way, I was absolutely confident that I would walk down Main Street USA with my baby girl, new heart beating strong in her chest and huge smiles on all of our faces. We’d finally be able to exhale.
Looking back, I know now that some of that confidence was false security. It was survival. The only way to get through the days and nights at her bedside. But I wouldn’t trade those moments of believing, of picturing her future, for anything. Except maybe another chance, but we know that’s not possible.
Remembering Our Girl
When I think of our precious Jewels now, the image that comes to mind is my favorite photo, the first one you saw on this port. Wrapped in her giraffe towel, smiling big, eyes bright and full of life and love. That’s the girl who lives in my heart. That’s the girl who will always be part of our story.
Jewels had a way of filling the room, even when she was tiny. Once she found her voice, she never stopped using it, always talking, always making herself known. After so many intubations, with one of them damaging a vocal cord, we never got to hear her voice in quite the same way again. But I still remember those early days when she’d sing back to me as I sang my 90s and early 2000s Broadway favorites. She was my littlest audience for Rent and Wicked, which was fitting since her first and only trip to the movie theater was to see Wicked.
Her smile was everything. It wasn’t just the curve of her lips, it was the way her whole face lit up, her eyes shining with the warmest joy. The feeling of Jewels smiling at you was one of the most beautiful things I’ve ever known, and it’s a memory I carry everywhere but can never recreate.
She loved her little world, too. We kept her away from screens until one day in her second CICU stay, someone turned on the TV, and she discovered Bluey. From then on, the theme song was her jam. She’d whip her head toward the TV the moment those first notes played. Church Doll, a ladybug lovey named by one of her respiratory therapists, was always tucked in with her. She lit up at the sound of her Princess Tiana doll, loved squeezing and smacking her crinkly books and never got tired of her ocean drum and jingle bells.
One of my favorite hospital memories came in Dallas, when our nurse Allison aka Nurse Fart (lovingly coined by the middle kiddos, Jada and Tavi) and I bundled Jewelsy Pie into the stroller and we went on a tour of the hospital. We wandered into other units, met other kiddos, and Jewels even got to go outside, something she hadn’t done in months. When we came back, we sat outside her room with nurses and other moms, just talking while the babies listened in. It felt almost normal. Just women talking, kids nearby and life happening. One of the moments I’m most thankful for during our CICU days.
Her spirit was sassy, happy and pure. And I miss it more than I can ever say.
Jewels’s sparkle is woven into every single thing we do here at Sparkle Strong. And while her heart has stopped, her light hasn’t. It shines on in the kits we give, the Joyboxes we pack and the families we walk beside. It lives in her siblings and how they continue on with a sparkling glint in their eyes that is equal parts love, fondness and grief. And I hope it continues to live in her legacy, in the way we continue to bring joy to those navigating the spaces we’ve now left behind, in the moments of magic that fight their way through the shattering pain of her absence on Earth.
Continuing On
At this time, it’s been two months and five days since we last breathed the same air. Since she said goodbye. Since she joined the stars. It has been the absolute hardest time of my life. My soul is broken, and it’s so hard to function every single day. But I try. Her siblings are here. Her legacy is here. Her spirit continues on, and I am trying to continue with it. I’m completely imperfect in this grief. I don’t know what I’m doing, I don’t know how to live and I still have so much sadness, anger and hurt.
To the parents reading this who know this pain firsthand: It’s not fair. It’s okay to hate every bit of it. Your child didn’t deserve this ending. You didn’t, either. There are no silver linings or platitudes or prayers big enough to cover that truth.
This post is personal, raw and ours. It’s not a resource list, not a guide. Those will come as I find them because too many families in our community face this reality. But for now, this is simply me saying: I see you. I grieve with you. I understand in ways I wish I didn’t.
If you’re still here reading, thank you for holding space with us. I will keep moving forward one messy day at a time, carrying my Jewelsy Girl with me in everything I do. Every Joybox, every survival kit, every phone call to a family who needs to know they’re not alone. Her life changed mine and it will continue to change how Sparkle Strong shows up for other families.
With love for my baby girl, always.
Love,
Jess
