When the Seas of Chronic Illness Appear Calm

Hemlibra (emicizumab-kxwh) has been a wonder medicine for many hemophilia patients, including my youngest son. Among the benefits that he receives is a respite from internal bleeds. He now infuses every other week instead of every day. We no longer focus on numbers regarding inhibitor levels, but pray that they remain low enough for my son to actively fight internal bleeds. Since he started using Hemlibra almost four years ago, he no longer experiences breakthrough bleeding episodes into joints.

We feel like we’ve landed on a new planet, complete with new rules regarding my son’s bleeding disorder. It’s like a piece of our lives no longer exists. I’m referring to the part that concerned itself with chronic care when hemophilia reared its ugly head almost every day. I find myself wondering, “What do I do next?”

For nearly 25 years, my wife and I have raised two boys with bleeding disorders. Now, the feeling of tranquility is overwhelming. Don’t get me wrong, we count our blessings every day, but I cannot help but wonder, “Am I missing something?”

Perhaps this time may include a new approach to parenting for my wife and me. In the years leading up to this time of rest, our relationship with our children focused on preparedness for the next significant bleed. Maybe part of our connection suffered as we made plans with doctors, teachers, and co-workers for keeping up with seas that were anything but calm. Now, we have the chance to take a step back and fill in some of the emotional gaps that occurred because we were tending to our boys’ medical needs.

Our work begins by filling in the empty spaces with moments of personal connection. We instilled movie night into our lives. My youngest son is 15, and getting him to stay in a room with his parents requires the patience of Job and the wisdom of Jesus. We allow him to choose the movie, and we watch and laugh together.

While the television captures our attention, there is an overwhelming sense of contentment that permeates the air. We sit together, simply enjoying our newfound freedom from hospitals, daily needles, and the constant fear of another bleed that damages joints.

I still read essential information from the most trusted organizations in the community, the National Hemophilia Foundation and the Hemophilia Federation of America. Both groups keep families informed about treatments, activities to meet with legislators regarding medical care and impending legislation that directly affects the hemophilia community, and camps and educational opportunities, so that our people may learn and grow together.

Calm waters sometimes prove misleading and give us a feeling of false security. We must fight the temptation to withdraw from our connections, and continue to learn as much as we can. We never know when the seas may grow choppy and we’ll need help to combat the harsh reality of the next storm.

For now, I enjoy looking at life through different lenses. I love the times my son and I spend on the golf course or watching a show. My time with him is sacred, set apart from the demands of the world outside my door. I look at the possibilities open to my stinky boy and find joy as he discovers a world free of a constant worry. We celebrate and fill in the gaps with happy times and moments of gratitude.

I do not know what the future holds regarding treatment and discoveries. What I do know is that we continue to celebrate life. Perhaps my parenting goal is to enjoy time with my son in both calm and rough waters. No matter what life brings, the one constant is that we need one another, so we remain faithful to our commitment during good and bad times. Together, we take steps into the unknown, confident that as long as we have each other, all remains well.

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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.