Plans Change and Memories Are Made Despite a Bleeding Disorder
Living with a chronic illness often means expecting the unexpected
I recently read a story about a family who drove to Nevada from Florida, hoping to get home for Christmas. Their flights had been canceled several times, so instead of spending the holiday at home with family, they spent several days on the road. Unexpected airline issues thwarted their plans.
Last month, stories of heartbreak flooded the internet, with people sharing their anger and disappointment over foiled plans. (There was even a bride who didn’t make it to her wedding.) Reading these stories sent me back to a time when our own well-laid plans took a dramatic turn.
My youngest son, Caeleb, is 16 years old. During his elementary school years, severe hemophilia with an inhibitor wreaked havoc on his body. Constant joint bleeds, missed days of school, and frequent hospitalizations made life at home chaotic. I longed for routine. I considered a day of going to work, sending the kids to school, and not receiving a phone call from the school nurse absolute heaven. But routine days were few and far between.
I still marvel at how my husband and I managed to keep moving forward during such chaotic times. Frustration often took over, as seemingly every day was filled with unexpected twists and turns. Life centered around Caeleb’s health. It ruled the lives of everyone in the home.
Vacations were not a consideration. Even daytrips were out of the question. Caeleb was considered medically fragile, and being close to home with the necessary supplies and medications was critical. Knowing that we could get to the hospital within 30 minutes was reassuring.
Some may think that I allowed hemophilia to take over our lives. Unfortunately, this is true. My oldest son, Julian, was engaged in numerous school activities while his brother struggled with hemophilia. It was essential to support Julian, but sometimes one parent had to stay home.
Julian marched with the band in a parade, and my husband carried Caeleb because he was healing from a joint bleed. The terrain around the parade route was rocky, and maneuvering a nonmobile child was difficult. Nevertheless, we did the best we could, and it was exhausting.
When we did get adventurous and tried to venture out into the world, nine times out of 10, we needed to abort our plans, stop to infuse Caeleb, and get home or to the hospital if his pain was uncontrollable.
I thought my family would forever be consumed by hemophilia.
Over time, Caeleb’s health improved, and bleeds became fewer and further between. As a result, we began to get out more and even travel. Of course, there were times we needed to stop and infuse or treat bleeds, but making plans began to get easier.
Living with a chronic illness prepares individuals and their families to expect the unexpected. Sometimes the unforeseen is devastating, and other times it’s simply bothersome. But there will be other plans and adventures. My family takes top priority in any circumstance. Memories are made when we’re together, even in a hospital room.
It just doesn’t get better than that.
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.