There’s no dress rehearsal for raising children with hemophilia
I learned to manage their care after the curtain was already up
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My oldest son, Julian, is a working actor in a touring production. For this show, he is trained to perform both male lead roles. Over the last six months, he performed one role, and he recently began the other role in a new city.
Even though he knows the script and staging, he told me he felt nervous walking into a new place with a new cast. He had only one rehearsal before opening night. There were no other chances to practice.
Even though he was nervous, he did a fantastic job. His fear of stepping in with little time to prepare reminds me of the early days after his hemophilia diagnosis.
Julian’s diagnosis of severe hemophilia was a shock. I didn’t know what the condition was, and I felt afraid and uncertain. I remember thinking, “I’m a teacher, not a nurse. How will I know what to do?”
The diagnosis was bewildering, but not knowing what to expect was even worse. Infusions, factor, and joint bleeds became part of my everyday language. I wondered what Julian’s life would be like. I’d dreamed of having a healthy child, and now I had so many questions and fears running through my mind.
Being a parent took on a new meaning. As a new mom, I was already learning about late-night feedings, when to add rice to a bottle, and how to balance work and home life. Now I had to take on additional responsibilities and learn new skills to care for my son. I was stepping onstage for opening night unprepared.
Parenting a child with a bleeding disorder doesn’t come with dress rehearsals. You learn after the curtain is already up.
Navigating unexpected challenges
Julian, 30, and his brother, Caeleb, 20, have the same diagnosis. When they were younger, I had to learn on the fly how to spot bleeds, when to call the hemophilia treatment center, when to give an infusion, and when to go to the emergency room. I followed my intuition back then, but things have changed.
Today, Julian is living his dream. Driving from our home in New Mexico to perform in Texas, Tennessee, Maine, Illinois, and New York (to name a few places) is enough to make me worry. But I’ve seen him grow up and take responsibility for his hemophilia care. He’s faced tough situations and managed them on his own. Sometimes he calls for reassurance, but he handles things like the adult I always hoped he would become.
I know both of my sons manage their regular treatments, but motherhood still whispers. Will they trust themselves? Will they speak up for what they need? I know they have the skills, and I’ve seen them remember what matters. Maybe one day I’ll worry less — though probably not until my last breath.
Julian didn’t succeed in his new role because of just one rehearsal. He succeeded because years of performing had prepared him for new challenges.
Over the decades, my sons have learned to trust their bodies and recognize signs of bleeding. They know when to administer an extra infusion of factor. They know when to rest to help a bleed heal. And I have seen Julian advocate for himself the way I did as a mama bear in his early years.
Parenting and caregiving are full of changing fears. At first, we are afraid because we don’t know what to do. Later, we worry because we know what to do, but we can’t always be there.
My sons will face unexpected challenges, and I will always be concerned. But the love, experience, and skills they’ve gained over the years have given them the tools they need to face any situation and live empowered lives.
And when the curtain rises, they will shine.
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 consult your physician or another qualified healthcare 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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