In our family, we each play a role in navigating hemophilia

My husband, Joe, and my sons, Julian and Caeleb, each have their own unofficial jobs when we decorate for the holidays.

Julian brings the dusty red and green totes full of Christmas decorations in from the shed. I open them and decide what comes inside first. Joe and Caeleb head to the tree lot to find the perfect tree. They also put up the lights, and Joe always untangles the beads. I unwrap each ornament from its tissue paper and pass it to my family to hang on the tree.

Everyone knows their job and works together, step by step, like a well-practiced team. In the end, our home is filled with lights, garland, and decorations that bring back holiday memories.

The careful way we decorate for Christmas reminds me of Caeleb’s hospitalizations.

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Julian, 29, and Caeleb, 19, both have severe hemophilia with inhibitors. Julian’s experience has been what I would call “textbook,” with no significant complications, despite the inhibitor. Caeleb’s experience with the bleeding disorder has been much more challenging.

Caeleb’s elementary school years were tough. The inhibitor caused a lot of damage to his joints, and managing his pain was a complex process. Sometimes, his knee or ankle would swell with blood, and we couldn’t control the pain at home. This meant a trip to the emergency room and a hospital stay. Whenever the hematologist told us to go to the hospital, Joe and I got ready quickly.

Joe packed iPads, chargers, toys, and stuffed animals. I filled a small rolling suitcase with clothes, toiletries, colorful pillowcases, and snacks. We also brought our laptops so we could work remotely. Lastly, I filled a plastic pitcher with cold-brew tea bags and sweetener. We can’t go without tea.

Once we left the emergency room and got to Caeleb’s hospital room, I started unpacking right away. We tried to make the room feel like home, as comfortable as possible, to help us all get through a hard time.

Some people don’t understand why I wanted the hospital to feel like home. It’s not the same as being in our own house, of course, but when your child is in pain, having familiar things nearby can bring comfort — not just for Caeleb, but for the entire family.

Decorating for Christmas takes teamwork, and so does going to the hospital. Because we all knew our roles, we could settle in quickly and make sure Caeleb got the care he needed right away.

We acted out of habit, shaped by love and what we needed to do. Every item we packed, from iPads to favorite pillowcases and blankets, was our way of saying, “We are here and in this together.”

Now, as we gently hang ornaments on the tree, I sense that same instinct — the wish to fill our home with beauty, warmth, and love. Whether we were making a hospital room feel more like home or filling our living room with lights and memories, our goal was always to provide our family with comfort.

Soon, we’ll pack away the decorations. We don’t go to the hospital as often now. Still, the way our family moves together through both good and hard times is part of who we are. We’ve learned to be there for each other, again and again.

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.