I am writing this as a diary because some stories cannot be told quickly. They demand time, space, and honesty, the kind that comes only after you have lived through fear and learned what endurance really means. My son’s name is Levi, and his life began with a pain that hid inside his body, invisible at first, but relentless in the way it shaped every day that followed.
Levi was born with total colonic Hirschsprung disease. At the time, those words meant nothing to us. We were new parents, holding a newborn and expecting sleepless nights and learning curves, not medical language that would soon dominate our lives.
We learned that his colon had no properly formed ganglion cells, the nerve cells needed to move gas and stool through the body. In simple terms, his body could not do something basic and essential to survival.
Pain did not arrive dramatically. It crept in through discomfort, bloated bellies, cries that sounded different from hunger or fatigue. Levi struggled to pass gas or stool. His body held onto what it should have been able to release.
Soon, the infections began. Enterocolitis. Frequent, dangerous bacterial infections that sent us rushing to hospitals with a child who looked so small and so tired. Each episode felt like a betrayal by his own body.
Fear took root early. We watched for signs obsessively. Every fever made our hearts race. Every change in his behavior felt like an emergency waiting to happen. Levi underwent several surgeries as a baby, each one meant to help, each one followed by hope that this time would be the turning point.
But progress was slow. Too slow. His weight lagged. His infections kept returning. The question we were afraid to ask started echoing louder: what if this was as good as it got.
Living with that uncertainty was exhausting. We loved him fiercely, but loving him meant constantly preparing for the next setback. Our days revolved around monitoring symptoms, managing appointments, and trying to keep him comfortable. We learned quickly that “stable” did not mean “well.” It only meant “not worse today.”
Eventually, we reached a breaking point. Levi was not making the progress doctors had hoped for. The surgeries had not given him the relief they promised. We were tired, scared, and desperate for answers that felt more solid than cautious optimism. That is when we sought a second opinion and brought Levi to Cincinnati Children’s.
From the beginning, something felt different. The teams in the Colorectal Center and the Division of Gastroenterology, Hepatology, and Nutrition looked at Levi as a whole child, not just a diagnosis. They listened to our story. They acknowledged how hard it had been. For the first time in a long while, fear loosened its grip just enough for us to breathe.
They taught us how to manage some of Levi’s treatments at home. It was empowering and terrifying all at once. Suddenly, we were not just parents. We were caregivers with responsibilities that felt enormous. We learned techniques, schedules, warning signs.
We learned how to help his body function while we waited for it to heal enough for the next step. Endurance took on a new shape then. It became practical, hands-on, relentless.
There were still setbacks. There always are. Some days felt like progress. Others felt like we were right back where we started. Levi’s body took its time. It demanded patience we didn’t know we had. We questioned ourselves constantly. Were we doing enough. Were we missing something. Was this the right path.
And then came the conversation about the pull-through procedure.
The surgery was described carefully, respectfully. A procedure that could finally allow Levi to pass waste properly. A chance for his body to work the way it was supposed to. Hearing those words filled us with hope and terror in equal measure. We had been hopeful before. We had been disappointed before. Trusting again felt risky.
The day of the surgery arrived quietly. I remember watching Levi sleep beforehand, his chest rising and falling, unaware of the weight his parents were carrying. Handing him over to the surgical team felt familiar and unbearable all at once. Endurance carried us through those hours of waiting, through the silence, through the endless loop of what-ifs in our minds.
The surgery was successful.
Even writing those words now feels surreal. Recovery was not instant, but something was different. Levi’s body responded. He began to gain weight. The infections stopped ruling our lives. For the first time, his progress felt steady instead of fragile. We watched him grow stronger, his energy returning, his appetite improving. Hope, real hope, began to settle in.
Today, Levi has no restrictions except for avoiding sugar, a small price compared to everything he has endured. He is gaining weight. He is thriving. He believes he is part ninja, which makes sense to anyone who knows his story. He has survived battles most people never see. He moves through the world with a confidence that feels hard-earned.
Levi wants to be a handyman when he grows up. He says he wants to help people and fix things. When he says it, I feel something tighten in my chest. My son, whose body once struggled to fix itself, wants to spend his life repairing what is broken. There is poetry in that I will never fully be able to explain.
The pain of those early years has not disappeared. It lives in our memories, in the way we still watch him closely, in the way our hearts pause when he gets sick. Fear doesn’t vanish just because things improve. It changes. It becomes quieter, more manageable, but it never fully leaves.
What has changed is our understanding of hope. Hope is not the absence of struggle. It is the decision to keep going anyway. It is trusting again after disappointment. It is believing that progress can come slowly and still be meaningful.
This diary is not just about Hirschsprung disease or surgeries or medical teams. It is about a child who began life with an unfair burden and a family who learned how to carry it with him. It is about pain that demanded attention, fear that reshaped our days, setbacks that tested our limits, endurance that became our default, and hope that finally found solid ground.
Levi’s body did not work the way it was meant to at birth. But today, it carries him forward into a life filled with imagination, purpose, and plans. And every time he tells me he is part ninja, I believe him. He has fought like one since the very beginning.
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