When my oldest son was diagnosed with hemophilia, it did not take long for my husband and I to start researching. More than anything I wanted connection. We found our local bleeding disorder chapter in Houston and began the journey with these amazing people.
I was excited to be surrounded by people who understood what our family was going through. Most of all, there were children the same age as my son, Julian. As the years passed, they went to camp together and shared their own journey … one I would never truly understand.
I had hoped that Julian would see how important connection was for me and my husband and that he would stay in touch with his “hemophilia” friends. I wanted Julian to be involved in the chapter and go to events with us, but after a few years of camp, he decided that he no longer wanted to attend. It was his decision to make, and it crushed my heart. Couldn’t he see how important it was to have a community that understood his medical challenges? Did he listen to the education that surrounded him at events and at camp?
I realized that if I pushed too hard, he would turn away from everything and that would be even more harmful. Sometimes things work out on their own.
Julian’s younger brother, Caeleb, had another orthopedic consult this last week. The news was devastating for Caeleb because the surgeon told us there was no surgical intervention that would be of help. Caeleb is now facing the reality that the pain in his knee and ankle are chronic and that he will have to figure out how to deal with it daily. Julian called us as we were on our way home from the appointment and when I told him the news, he asked to speak to Caeleb.
All of these years I thought Julian wasn’t listening to the stories that others with hemophilia shared. I thought he was tuned out to the education, workshops, and camp programs. But in his own way, he was soaking it all in.
My now-adult son was the voice of encouragement to his little brother. The things he told Caeleb sounded very much like what I have been saying. But when the words come from someone who understands what it is like to live with hemophilia, they are much more meaningful.
You never know when your children are listening. The truth is, they soak in more than you can imagine. I am fortunate to have two sons with hemophilia who are present for each other. They can be a support to each other in a way that I never will.
I’m glad those years of education, workshops, camp programs, and being in community made an impact on my sons. It may not look the way that I had hoped, but it made a difference. And that is all that matters.
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.