Snow in New Mexico reminds me of difficult days with hemophilia
Even in hard times, I find joy and support in my relationships
My husband, Joe, and I recently officiated a marriage vow renewal for close friends in Santa Fe, New Mexico, one of our favorite places. We made a long weekend of it, spending time with friends, meeting new people, and enjoying each other’s company.
The next morning, we had breakfast at one of New Mexico’s best restaurants. Over coffee, we realized it had been months since we’d spent real time together. We felt relaxed and free from our phones. Right then, we promised to make time for each other every two or three months, planning weekend getaways to reconnect.
I call this commitment “couple care.” Self-care is important, but taking care of your relationship matters just as much.
When hemophilia meets the snow
This trip also brought back memories of our early experiences with hemophilia. Both of our sons — Julian, 29, and Caeleb, 19 — live with severe hemophilia A, and Caeleb has an inhibitor.
When they were younger, we often visited Santa Fe in the winter to ski and play in the snow. We had plenty of snowball fights and always enjoyed our time together. The snow reminds me of those happy days, but it also brings back some harder memories.
Caeleb’s experience with hemophilia and an inhibitor has been difficult. He’s faced joint damage, chronic pain, and limited mobility since he was a toddler. He wanted to ski, but his leg couldn’t handle it. That was one of the first times hemophilia became a real limitation for him.
Julian, on the other hand, could ski without any trouble. His inhibitor was managed early on and didn’t cause any damage. He’s never been limited by hemophilia, and I’m very grateful for that.
When Caeleb was in second grade, he struggled greatly with his inhibitor. He couldn’t straighten his leg for a year, and it was painful to touch. Because of his limited mobility, he relied on a walker and a wheelchair. Treating his joint bleeds also took longer because he developed an allergy to factor VIII.
During that period, he spent a lot of time in the hospital and missed over 50 days of school. Still, he was determined to stay involved, and his teachers and classmates showed him a lot of compassion and love.
One year after his first hospital admission for his contracted leg, we spent Thanksgiving in Taos, New Mexico, about an hour north of Santa Fe. By then, his leg was almost straight, and he refused to use a mobility aid, eager to get around on his own. The scenery in Taos is stunning, but the icy sidewalks made me nervous. I kept telling him, “Caeleb, be careful and use your walker!” When he didn’t listen, I stayed close, ready to catch him if needed.
He never fell, and he wouldn’t slow down. After a year of being careful, he was ready to move forward.
Finding joy amid hardship
Our recent trip to Santa Fe reminded Joe and me of all the time our family has spent in northern New Mexico. While we enjoyed the magical white snow, it now brings back memories of my youngest son’s struggles. But thanks to the strength of my marriage, I’ve been able to find joy, even during the hard moments with hemophilia.
It’s easy to forget the tough times when things are going well. But it’s important to remember how we got through them and to be thankful for those who stood by us. Today, I’m grateful for some couple care that reminded me of the love and strength in my marriage.
I hope you take time to care for your relationships. Whether it’s a marriage, partnership, or friendship, don’t forget to cherish the people who mean so much to you.
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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