I Am Seeing My Son Now Take Part in His Own Advocacy

I am an advocate, born and bred. Being an advocate is simply part of my DNA. Even when I was a young girl, seeing someone be mistreated or experience prejudice angered me. The years have taught me how to fight my battles and fight for others, but when my first child was diagnosed with severe hemophilia A, I became an advocate in an arena where I knew absolutely nothing.

Once I began to learn, I realized that I needed to speak up for my son. Even without a clinical background, I came to learn that as a parent I knew my children better than anyone. I found my strength and desire to advocate for my children and for those who did not have a voice.

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Over the years, I’ve traveled the country speaking to families about bleeding disorders, and I’ve always secretly nursed the hope that my sons would also speak up and share their stories within the bleeding disorder community. But I knew this had to be their choice and that it could only happen when they were ready to do it.

My youngest son, Caeleb, 15, has recently stepped up to share part of his story.

He and I were asked to take part in a panel discussion on chronic pain as part of a four-part series about inhibitors, which occur when antibodies develop against the infused factor replacement treatment. The discussion was sponsored by the National Hemophilia Foundation, and I was to serve as moderator and ask Caeleb questions as we participated via a video conference call.

I was nervous about it. What would he say? Would his information resonate with others? Seeing Caeleb step up and share was phenomenal. People might think that a boy his age would not have much to share about chronic pain, but he has weathered a lifetime of experience, and during the session, I heard my son say things that I knew would resonate, that I knew would be helpful to others.

Having the chance to do this with Caeleb was a full-circle moment for me. I have always been my son’s advocate and worked with Caeleb’s father to make decisions on his behalf and coordinate his care. But on that day I came to see him as a partner in his own care. He was able to verbalize his experience and describe the reality of chronic pain brought on by complications from inhibitors. Caeleb’s journey with hemophilia has been at times painful and exhausting, but I saw in him someone who was able to use his experience for good. He seemed to come away from his participation in the discussion as a different kid — a kid becoming a young man.

It’s crucial for people living with a rare disorder or chronic illness to share their stories when possible. These stories help people who might be living with the same condition to realize that they are not alone. And when stories of triumph are shared, hope flourishes.

As long as I have breath, I will advocate for people with bleeding disorders. When I think about those days years ago when my sons were diagnosed with hemophilia I realize millions of miles have been traveled to be able to get to where we are now.

And we are still here.

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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.