Meet Bray Bray
We call our son Brayden by the nickname Bray Bray. He was born with a rare genetic disorder called GNAI1 that we didn’t officially know he had until three years ago. Before this diagnosis, we spent the better part of a decade trying to figure out why Bray Bray was the way he was: Infantile Spasms at 5 months old; global developmental delays; hypotonic cerebral palsy, microcephaly; legal blindness; and later in life, epilepsy associated with Lennox-Gastaut syndrome.
Bray Bray cannot talk or walk, but we strive to give him all of life’s adventures from his wheelchair. That being said, the first thought that comes to mind when people ask me about Bray Bray and his condition is “He’s my hero, and I wouldn’t be the man I am today without his unsung courage showing me that it is possible to overcome long odds”.
I’ve always prided myself on hustling and putting in the effort. What Bray Bray has instilled in me goes even one step further. It’s not just about the grind. It’s about not letting those hardest moments change the core of who you are.
Grieving the Life He Wouldn’t Have
The neurologist saved my son’s life. She recognized what others might have missed. Those subtle head drops in my five-and-a-half-month-old son were Infantile Spasms, a rare and dangerous form of epilepsy. Because she caught it early, we acted quickly and Bray Bray’s seizures stopped. For that, I will always be grateful. But alongside that life-saving diagnosis came a prognosis that would take me years to fully understand and accept. Our son would most likely never catch up developmentally. For seven days, my wife Melanie and I lived in a haze of monitors, medical jargon, sleepless nights, and uncertainty, learning how to stay calm when we weren’t, and how to hold our son while pretending everything was going to be okay.
Then, slowly something shifted. The seizures lessened. Then they stopped. It felt like magic. As I would come to understand, magic is rarely simple. It doesn’t arrive without complication. It gives you relief, but it also leaves you with questions that you didn’t know to ask.
When Brayden came home, our lives didn’t return to normal. They became something new. For three months, Melanie and I administered ACTH, a powerful hormone treatment that ultimately stopped the seizures. Every injection required equal parts precision, hope, and nerve, serving as a daily reminder of how fragile everything still felt. Each one carried the same quiet prayer. “Let this work. Let his brain heal. Let this be enough.”
What followed was a period of relentless effort. If there was a path forward, I was going to find it. If there was something that could help Brayden, we were going to do it. We aggressively enrolled in early intervention services. Twenty-one therapy sessions per week, spread across six days. Physical therapy. Speech therapy. Occupational therapy. Special instruction. Vision therapy. Music therapy. On his one day off, we took him to swim class.
Our home became something else entirely: a therapy space, a sensory gym, a place built around possibility. There were standers and gait trainers, textured toys and therapy mats, binders filled with notes and recommendations. Melanie and I became students of a world we hadn’t expected to enter, documenting everything: every suggestion, every small gain, every sign of progress.
I believed effort could close the gap. I believed determination could rewrite the outcome. In many ways, that belief carried us forward. But eventually, something shifted. Not in a doctor’s office. Not in a therapy session. Inside me.
It came quietly without announcement, a realization I had been avoiding. I had spent months focused entirely on my son’s care, his therapies, his progress, his needs. I hadn’t taken care of myself. I hadn’t allowed myself to process what had happened, not just to him, but to me. The truth was, I had an idea of what parenting would look like. When that vision changed suddenly, dramatically, it left behind something that needed to be acknowledged. Grief. Not for who Brayden is, but for the life I thought he and we might have had.
Coming to terms with that wasn’t immediate. It wasn’t easy. It didn’t mean giving up. Over time, I began to understand that strength isn’t always about holding on. Sometimes, it’s about letting go. Letting go of timelines, of comparisons, and of expectations that were never built for our child in the first place.
That revelation led to acceptance. Bray Bray’s path didn’t need to look like anyone else’s to be meaningful. His life didn’t need to be “normal” to be full. Slowly, I started to understand something I couldn’t see in those early days. He wasn’t the one who needed fixing. I was the one who needed to grow.
If there’s one thing I know now that I didn’t know then, it’s that the life my son has is not a lesser version of the one I imagined. It’s simply different. In that difference, there is depth. There is meaning. There is joy I wouldn’t have recognized any other way.
Bray Bray can’t tell this story himself. He can’t explain what it feels like to endure seizures, therapies, surgeries, or uncertainty. He can’t tell you about the joy he finds in a drumbeat or why a simple smile can change an entire room. So I write. Not because I know everything he would say, but because someone needs to bear witness to the life he’s living.
Nine Years Later: 28 Days and Last Rites
From May of 2015 to May of 2024, Bray Bray was seizure free. Regardless of all his developmental delays and other needs, he was not in medical danger. And then, just like that, the seizures returned. The medication didn’t work. An infection hit while his body was too weak to fight it off.
By this point, Bray Bray was going to school with a private duty nurse to make sure she was there just in case something like this happened. The nurse made the call to have the ambulance take Brayden to the hospital from school, which we learned later saved his life, along with the incredible medical team at the hospital that took care of him for 28 days.
The first week, it could have gone either way. Bray Bray was sleeping 23 hours per day, and hooked up to a BiPAP machine to help him breathe. He was being fed through a nasogastric (NG) feeding tube. Every few hours, he received chest vest treatments. His nose and mouth were being suctioned, as needed, with a suction machine. It looked so bleak. I remember at one point being gently approached about Last Rites. The first seven days would decide whether Bray Bray would live or be lost to us. And then, it happened.
On the eighth day, just when I thought all hope was lost, Bray Bray did what he always does, he sat up, and with a wide, purposeful smile, lifted me up. I knew at that moment that he was going to be okay. It changed my life perspective forever. With his one smile, it was like Bray Bray spoke 1,000 words to me that morning, or at least these 6: “I’m going to be okay dad!”
What Really Matters
While we’ve never heard Bray Bray talk, nor seen him walk or run, he’s helped us travel lightyears further than we ever could have envisioned. His spirit and aura are all we need to show us what it means to truly shine, no matter how dark the road ahead might seem.
His transcendent smile and steady, disarming persistence has a way of reaching people, of slowing them down, and of reminding them what really matters. Magic, it turns out, didn’t disappear after the infantile spasms stopped. It didn’t vanish after the seizures came back and went away again. Instead, the magic just changed form. Learning to see it permeate through Bray Bray, our Brave Angel, has been the real work all along.
ABOUT THE AUTHOR:
Chris B. is an award-winning published poet, caregiver, and Dad to his son Brayden (Bray Bray). When he’s not writing, caregiving, or working, you can find Chris on the pickleball and beach volleyball courts of Long Island, NY, where he resides with his wife Melanie and Bray Bray. You can find Chris on Substack as Chris B. Writes: https://chrisbwrites.substack.com
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