I fell in love with my husband when I was fifteen years old. We met in high school, two kids with big dreams, and I knew even then he would be the one. We went off to college together, got married after graduation, and began building the life I’d always imagined.
A year into marriage, I was pregnant with our first baby; I was overjoyed. And then everything went just fine until after a routine test my doctor called me in. This day, I learned I was carrying the sickle cell trait; I had never heard of that. When my husband got tested, we found out he did too. Our doctor explained if both parents have the trait, their child has a chance to be born with sickle cell disease. We were scared but hopeful. We prayed our baby was healthy.
In January 2016, we welcomed our first son a happy, healthy boy who only carried the trait, not the disease. Our hearts were full. A year later, we decided to try for another baby, dreaming of giving our son a sibling. But instead of joy, we faced heartbreak. Our second pregnancy ended in miscarriage. Months later, it happened again. I can’t put into words the grief I felt the feeling that maybe I wasn’t meant to carry another child.
Finally, we decided to give it one more try. The pregnancy went well, and very slowly we started to have hope again. In November 2018, our second son, Zo, was born fast, healthy, perfect. It felt like a dream to hold him in my arms.
Two weeks later, the phone rang. It was our doctor. Her voice was soft but serious. “Janelle,” she said, “your son’s test results are in. I’m sorry, but it looks like Zo has sickle cell disease.”
I froze. My heart sank, and I looked down at my tiny baby in my arms, feeling a wave of fear and a sense of helplessness I had never known before. My husband and I clung to each other in an attempt to make sense of what this meant. From that moment on, everything changed.
When Zo was three months old, we met with a pediatric hematologist who confirmed the diagnosis: sickle cell SS, the most severe form of the disease. We left that appointment with pamphlets, medications, and a heavy new reality. Still, we promised each other we’d learn everything we could and fight for our baby every step of the way.
That first year was brutal, for sure. Zo was hospitalized six times and needed three blood transfusions. Each time he went into the hospital, it broke me a little more: watching nurses try to find a tiny vein, holding his hand as he cried, feeling completely helpless. And so I kept questioning, but never stopped believing God had called us for a reason.
Through it all, Zo never stopped smiling. Even in pain, he radiated joy. His strength taught me how to fight, how to speak up, and how to trust my instincts as a mother. I learned to advocate for him, to ask hard questions, and to never apologize for protecting my child.
When the pandemic hit in 2020, staying home meant fewer germs and for the first time, Zo went an entire year without a hospital stay. That same year, we welcomed our third son. He, too, carries the sickle cell trait, but he does not have the disease. We are so thankful.
Life with three boys is busy, beautiful, and a little unpredictable. Some days, Zo’s illness requires everything from us; we face it together in love, faith, and gratitude. The hardest part for me was the guilt – knowing I passed this on to him. But every time I see his smile, I remind myself that God doesn’t make mistakes. He gave us Zo for a purpose. I don’t know what the future holds, but I do know this: my husband and I will keep fighting for our boy. We’ll keep sharing our story, in hopes of bringing hope to other families. And we’ll keep choosing love-every day.
