Fighting for Relationships When Hemophilia Takes Center Stage

There was a time when hemophilia ruled my family’s every waking moment.

My husband and I set out to accomplish two goals each day: going to work and taking care of our youngest son, Caeleb. It was nice when Caeleb could go to school for an entire day, but those days were few and far between. Caeleb’s hemophilia with an inhibitor was the highest priority, and some things began to suffer in my home.

I longed for routine. I had taken many things for granted, such as everyone waking up at the same time each day, getting dressed for school, catching the bus, going to piano lessons, and enjoying family chatter. These daily moments were gone. My family was together on fewer and fewer days, and connecting via FaceTime and texts was our new normal.

Although technology allowed us to connect, not being in the same house each day began to wear on my soul. On the rare occasion that we were together for a few days, my anxieties were constant. I was on high alert, waiting for the next “buzzy” ankle moment.

When Caeleb went back into the hospital due to inhibitor complications, my family fell back into the routine of one parent being at the hospital for two to three days at a time while the other parent stayed at home with our oldest son, Julian.

Once Caeleb improved, life changed. Each member of my family went to school or work every day, all day. After school activities resumed, I began to have some extra time at home, and I noticed that we’d all started to retreat to our own corners of the house. We needed time to ourselves to figure out who we were again.

We lost each other for a moment.

It took intentional time together to bond again. Meals at the kitchen table were a start. We had Sunday lunch at a restaurant after church, and during the week, the occasional meal together allowed for sharing. My oldest son, Julian, was a teenager at the time, so family time wasn’t always his idea of a great evening, but we found time to laugh together, play with the dogs, and simply enjoy being in our home.

I knew that being together as a family was important, but making time for my husband, Joe, and me was equally essential. Joe and I work well in crises, but this prolonged crisis took a toll on our relationship. We’d focus on the next task on our list to ensure our family was being cared for, despite what hemophilia brought that day. Our time together as a couple suffered.

Eventually, Joe and I made time to go on the occasional date. Even going out for a meal together gave us time to breathe and connect. Before I knew it, we began to find our way back to being a couple.

Many with chronic illness strive to regain some aspect of normalcy in their life. When relationships suffer, this work of returning to normalcy and routine can be difficult. But maintaining a healthy relationship with the illness — in my case, hemophilia — is equally important.

When hemophilia moved from the center of my life, everything began to fall into place. My family began to heal, my marriage grew stronger, and life is better now than I could have ever imagined.

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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.