Until recently my husband and I didn’t realize how alone Chris felt growing up with hemophilia. He had support from family, friends, coaches, teammates, the treatment staff, and us. Yet he didn’t have anyone to talk with that really understood what it was like to have hemophilia. We tried our best to not treat Chris differently than his older brother, Andy. We let him explore his world with few limits on what he could try, but there was always that cloud that hung over him. We could only understand a part of what it was like to live with this disorder.
When Chris was young, a local hemophilia chapter existed in our area, but we never felt like we fit in. Chris was not the typical toddler with a bleeding disorder. He didn’t have any bleeds between three months and six years of age. We couldn’t relate to parents who were casually talking about problem joints, prophylactic treatments, infusion issues, spontaneous bleeds, inhibitors, or any other concern with hemophilia. Chapter events were few and far between, and most were social occasions, not educational events, so we didn’t attend many of them.
We relied on the treatment center staff for guidance and education. They answered our questions, helped Chris with treating bleeds, and taught him how to self infuse. But Chris still didn’t have someone that fully understood what he was going through.
Chris didn’t like being tagged as being “different.” No one understood his feelings when he had to sit on the sidelines and watch gym class due to a bleed, or sit on the bench to watch a game instead of being part of it. We knew the anger he had when he had a bleed, and the frustration that he voiced. But he never talked to us about feeling like he was alone, the only one who ever had to deal with these issues.
When Chris was around seven years old, the HTC suggested he go to hemophilia camp. He and his brother went once. They both had a fun time, but I don’t think Chris really felt like he fit in, as he still wasn’t having many bleeds. Camp also conflicted with baseball. Baseball was Chris’s passion; he didn’t want to miss a week every summer for camp. Even though he met others like himself, he didn’t connect enough with anyone to want to stay in touch.
At one of the few chapter events we went to, Chris met a young man, Corey, who had hemophilia and who had played college baseball, and then played six years in the minor leagues. The timing of the meeting couldn’t have been better, it was about the time Chris was rethinking baseball due to infusion problems and numerous injuries. The event took place at a Colorado Rockies baseball game. The two of them sat together during the game, and my husband and I let them have their space. Corey chatted with Chris about baseball and hemophilia. He passed on advice about several things like admitting there was a bleed and early treatments. All things the treatment staff and we had said over and over. But this was different; this came from someone who shared his passion and understood what he was going through. That meeting made a huge impact on Chris.
It wasn’t until Chris became an adult that he became involved in the hemophilia community. During his college years, he started working at the HTC during the summers, and continued after graduation. On several occasions at work, Chris was asked to talk to families with newly diagnosed children about his experience with hemophilia.
About this time, our Colorado Chapter of the National Hemophilia Foundation began to grow and flourish. They have had a wonderful impact on our community. Through numerous social and educational events we have been amazed by all the wonderful families we have met. Chris also became a member of AFFIRM, a group of young men from around the world with hemophilia. He has finally found others like him, others he can relate to: his “blood brothers.”
Over the last few years, Chris has been fortunate enough to attend camps in Colorado and Alaska, and has spoken events around the country. He has been able to sit with kids share with them his fear of needles, his lack of acknowledging bleeds when he was young and the consequences. He feels it’s important for others with bleeding issues to know someone else can truly understand their pain, their fears, their anger, their feelings of isolation, just as Corey understood him.
In hindsight, maybe we should have tried harder to attend more hemophilia events, or sent Chris to camp despite baseball. Chris may not have had as many struggles growing up with his hemophilia. I am very thankful there are more places today for families and kids to reach out and find out they are not alone with their bleeding disorders. The sense of community will help reduce the feelings of isolation not only for your child, but for moms and dads too.
Cathy lives in Colorado with her husband, Alan, and has two adult sons, Andy and Chris. Chris has severe factor IX and is attempting to summit the highest mountains on all seven continents.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers