At 20 months old, my son, Carter, my second child, passed away in his sleep.
Carter’s death was entirely unexpected. True, he had a traumatic brain injury as an infant: A rare virus stopped his breathing and put him on life support when he was just a few days old. He recovered — the first of many miracles in Carter’s life — but he was left with 40% global brain damage. Carter’s life as we envisioned it was changed in an instant: My husband, Matt, and I were now raising a little boy who would need tremendous support in his development — just to be able to eat, sleep, and crawl like a baby typically does. But to die as a result of his injury? That wasn’t even a possibility in our minds.
Carter, despite his brain injury, was incredibly healthy. He crawled and laughed and smiled, and we stopped at nothing to provide him with the highest quality care and the most nourishing diet — even moving across the country to access therapies that helped Carter achieve the developmental benchmarks we were told he may never reach.
Twenty months to the day after his birth, Carter died of a brain bleed that was located in the damaged area of his brain.
He passed peacefully in his sleep, on a rare occasion when I was not home with him. The damage was caused by his swollen brain, which eventually led to a lack of oxygen and a hemorrhage.
I was just a young 25-year-old who'd had her second baby. Never ever, ever in a million years did I even think this might have been how my life and my baby’s life would go. I don’t think anyone sees life events like this coming.
No parent can ever be prepared for their child's death.
And the grief afterward is agonizing beyond description. I went into a tailspin of depression. I had been caring for Carter nonstop for those 20 months — and raising his older sister, Elizabeth — and I was lost. Everything as I knew it had changed in an instant. No more need for diapers and wipes, homemade baby food in the freezer, toys and clothes, and routines. Gone, in an instant.
I was angry at Matt, who processed his grief over Carter differently. He couldn’t understand why I was depressed, and I couldn’t understand why he wasn’t. We became angry and defensive, we withdrew from one another, and our marriage suffered. Thankfully, over time, we saw these difficulties as they were — an overflow of our grief — and got the support we needed to process our grief, and ultimately to turn to one another with a fresh perspective. We were able to rebuild our life together after the loss of Carter.
The recovery of our marriage, by itself, is miraculous enough. The fact that we remained a family makes us an exception in the world of special-needs families. But we didn’t stop there. We realized that our experience with Carter had opened our eyes to a world we never knew existed: a world where parents are told what their child can’t do or won’t achieve, a world where parents are often advised to simply wait and see which benchmark their child will miss next.
Matt and I aren’t wait-and-see kinds of people.
Our experience with Carter turned us into relentless advocates — I discovered the Warrior Mama inside of me, and Matt discovered the fierce and compassionate voice for the voiceless inside himself.
You see, when Carter came off of life support after his brain injury, Matt and I took massive action to get Carter the help that he needed to heal and develop and live the best life possible. Matt scoured the internet for hours, searching for treatment options for children like Carter. I think it was the man in him, seeking to fix Carter’s situation. His search led us to some little-known but highly effective treatment options, but they weren’t available where we lived at the time. So we packed up our little family and moved across the country to California, where Carter received daily treatments that provided him with a beautiful quality of life.
We put blinders on to everything else, blocking out all of the negative projections and bleak outlooks, protecting our hearts and our hope. One treatment was particularly beneficial for Carter: the Anat Baniel Method, a movement method that takes a holistic approach to rehabilitation from brain injuries using slow, intentional movement to “wake up” the brain. I know without a doubt that Anat’s work created the best quality of life for Carter during his 20 months on this earth.
After Carter’s death, as the fog of our grief began to clear, Matt and I knew that our situation with Carter was not unique.
So many families are left with the wait-and-see approach after their child’s brain injury or another neurological diagnosis. Those families need to know that they are not alone. They need to know that there are options out there for their children. They need to know that their child’s life can be one filled with miracles, not missed benchmarks. They need to know about practitioners like Anat — there are so many of them — who are so consumed with the important work of healing that they don’t have the time to advertise their services.
Matt and I chose to turn our grief into something that would benefit families like ours. We established a nonprofit organization in Carter’s memory: the Who Is Carter Foundation. Who Is Carter exists to provide the resources and hope we didn’t have when Carter got sick. Through the Who Is Carter Foundation, we launched TheBrainPossible.com, a centralized source of information, treatment options, and resources that give families hope as they face the challenge of navigating their child’s treatment journey.
We didn’t transform our grief overnight.
It took us a number of years to get there. And that’s the reason I’m sharing our story with you. The loss of a child is one of the most awful experiences imaginable. Matt and I will be grieving parents for the rest of our lives. But I want all of the grieving mamas out there to know, from a mama who has been there: It does get better. It takes time, and it doesn’t look pretty, but it does get better. And beyond that, the experience of losing a child gives parents some painful but beautiful gifts: empathy and a soul-deep appreciation for the beauty of life. It’s up to us to choose what you do with those gifts.
It’s hard. Healing after the unimaginable loss of your child seems impossible.
But I encourage all of you grieving parents — when your heart is ready, when you know the time is right (don’t push it) — shift the energy of your grief into something beautiful and powerful for yourself, your family, or your community. Use your experience to make a difference in the lives of those around you. The world needs your story, and the world needs the gift that only you can give — a gift that has been forged in excruciating pain but can lead to something beautiful on the other side of the unimaginable heartache.
