New swimming trunks, sunscreen, cap, sleeping bag — gathering these items means it’s time for hemophilia camp! My son Caeleb is so excited that he is driving his dad and me a little crazy. Two years ago, he broke his wrist the night before camp and wasn’t able to go. Last year, he broke another wrist on the third day of camp and had to come home. I am hoping that he makes it through the week this year.
What I love about camp is that my mighty warrior Caeleb looks forward to seeing his hemo friends. He has already started developing his community of “blood brothers,” and I could not be happier. I want him to grow up knowing that his “blood brothers” are not only his friends once a year at camp or at the annual Family Weekend, but also they are relationships that should be kept going for years to come.
Camp is about having fun and not letting your bleeding disorder dictate your week. It’s also about making friendships that last a lifetime. The focus at camp is often for kids to learn how to self-infuse (or inject) their factor or products so that they can take charge of their bleeding disorder. It’s a great starting point for them to realize that they are their own best advocates.
They cheer each other on when they are successful, and encourage each other when they are down and unable to infuse themselves. It’s at camp that they realize they are truly not alone in this world of bleeds, bruises, restrictions, and hospitals. They are more than friends.
I’ve seen campers transition into counselors who continue coming to camp every year. That is what I call a brotherhood. My oldest son, Julian, went to camp for several years, and when he said he didn’t want to go any longer I was disappointed, but I am glad he had the experience, because he learned how to self-infuse at camp. He took what he needed from those summers and took charge of his hemophilia.
I hear of moms who are scared to let their little boys with bleeding disorders go away to camp. The truth is there is no safer place for them to be! A hematologist and nurses are on-site, and if there is a problem, they are right on the spot. This is the place for them to be with dirty fingernails, smelly bodies, and unbrushed teeth, but they’ll have a super time. They need to experience camp, and moms and dads need to experience letting them go for the week. Trust me.
A hematology nurse who has been going to camp for over 20 years told me that in the early days, the kids they treated were using wheelchairs and crutches. These days they are teaching self-infusion and treating cuts and scrapes. Factor products and treatments have come a long way. If there was ever a “time” to have a bleeding disorder, the landscape of treatments is amazing right now. This is the time. Let them go and have fun because the future looks amazing.
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.
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