I never got the chance to ask my mom about hemophilia in our family
This Mother's Day, I wish my mom could see her grandsons with hemophilia
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Certain moments stay with me forever. I remember walking down the church aisle with my dad toward my future spouse, the scent of my babies when I first held them, and the bishop’s hands on my head as I knelt among my fellow clergy during my ordination as a deacon in the United Methodist Church. I can recall every detail of these important times. There are many more moments I remember, but one stands out as Mother’s Day draws near.
When my first son, Julian, was born in 1996, I expected a healthy baby. My husband, Joe, and I were excited to welcome our son into the world. The day came with a few unexpected moments.
The morning of Sunday, June 23, 1996, was cloudy. Thunderstorms rolled through Houston, as they often do during hurricane season. When I was admitted to the hospital, I didn’t know that lightning had hit a transformer, leaving the hospital with only basic electricity. The ice machine didn’t work, and fans were everywhere. It was more than just uncomfortable.
That afternoon, my mom hosted my baby shower. Family and friends called me while they enjoyed cake and described the gifts as they opened them. We all found it funny.
After our son was born, Joe and I enjoyed the wild beauty of that day. In the early morning, we sat quietly in our dark hospital room, since the air conditioner still wasn’t working. We ended up laughing and dreaming together until sunrise.
On Tuesday, Julian was circumcised, and we planned to go home the next day. I felt both nervous and excited, but then something went wrong. On Wednesday, my mom visited the hospital while my husband went to school. Suddenly, Julian’s diaper filled with blood, so I called the nurse. She quickly took him, and I stayed calm.
I will never forget what happened next. My mother sat at the foot of my bed, and after the nurse left with Julian, my mom’s eyes grew wide with fear. Her jaw dropped as she said, “What if he has hemophilia?”
I responded, “What? He’s fine; they’re just going to clean him up.” Maybe my mind was trying to protect me from panic.
A few days later, Julian was diagnosed with severe hemophilia A.
My mom passed away five weeks after he was born.
Unanswered questions
Nearly 30 years have gone by, and I still wonder why I never asked her about what she said. Twenty years ago, when my second son, Caeleb, was born and also diagnosed with hemophilia, I started looking for answers. After talking with family, friends, and hematologists, I learned that my brother’s death — just days after he was born — was most likely from complications of hemophilia.
Maybe my mom knew about hemophilia from earlier generations. Were there stories about relatives dying from bleeding without knowing why? Perhaps she realized my son could have a bleeding disorder and hoped it wouldn’t happen. Did she keep the secret of hemophilia her whole life?
Mom was only 64 when she died. I thought we’d have more time.
I imagined her spoiling my son with love, attention, and snow cones. She would have held him every chance she got. I pictured her feeding him his bottle, sneaking him a taste of ice cream, and singing her “loo loo” lullaby while rocking him to sleep.
She loved him, rocked him, and sang to my beautiful son for a few weeks. But it wasn’t enough time.
As Mother’s Day gets closer, I think about my mom with deep love and respect. I wish she could have seen her grandsons with hemophilia. Even though they have faced challenges, they are happy and doing well. Maybe this would have eased any pain or regret she felt about keeping the secret.
My faith tells me that Mom is at peace with her loved ones in heaven. Today, I hold her memory close, trusting that love has bridged every silence and every unknown between us.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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