Memories Are Vivid After Many Years With Hemophilia

I enjoy Sunday mornings. As a United Methodist pastor, I lead worship and love on my congregation. However, one of my favorite parts of the morning is my commute.

My youngest son, Caeleb, comes with me to church. He is responsible for the video recording and sound each Sunday. During our 40-minute drive, we listen to music and podcasts and talk. We often talk about silly things, but recently I asked him a serious question.

I reminisced about how we sped down that same highway, doing our best to get to the hemophilia treatment center in Albuquerque, New Mexico. Some of those drives were filled with Caeleb crying in pain from a joint bleed.

I told Caeleb that it is sometimes hard for me to believe that we lived through those times. Since he was much younger when he endured severe complications from an inhibitor, I asked if he remembered those instances.

“Mom, I vividly remember those drives,” said Caeleb.

I’m not sure what I expected to hear, but my son’s demeanor changed when he answered. He sat up a little straighter, and his eyes widened. Since he was much younger during that terrible season of hemophilia, I hoped that the trauma of those experiences would somehow not have stayed with him. I hoped that with time, the trauma of his struggles would be behind him.

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Does time heal all wounds? I hoped it would. As the mother of two sons with hemophilia and inhibitors, I have come to learn that time helps take the edge off the pain, but it doesn’t heal it. I am at a stage where I look back at Caeleb’s journey and sometimes drop my jaw in disbelief. How did we get through that? Did that really happen?

I will never know what it feels like to have a joint bleed. Caeleb’s right knee would fill with blood, making it impossible to walk or even bend his knee. While I know how to help Caeleb in those situations, I will never understand how he feels.

Those difficult times are a distant memory for me, but for Caeleb, now 15 years old, those moments are only a thought away.

Seven years have passed since Caeleb’s last bleed. This reality still takes my breath away. I know that a bleed can happen in an instant, and hemophilia can become the center of my son’s world once again. Instead of focusing on what could happen, I choose to revel in the wonder of how well Caeleb is doing. I don’t wish to live in fear, and I especially don’t want Caeleb to live in that state.

For now, I will continue to enjoy the drives to church. There will be many more moments of laughter, silliness, and even revelations. While the memories of the bad times are not very distant for my son, I will be by his side, helping him find new experiences that bring joy. Perhaps with more fun and adventure, the bad times will become a fading memory.

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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 Services, and are intended to spark discussion about issues pertaining to hemophilia.