I miss being my sons’ advocate, but am proud of their independence
As the years went by, they took on more responsibility for their care
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When my sons were small, I didn’t give speaking up on their behalf a second thought. As toddlers, they had little interest in sitting through difficult explanations about their bodies and about hemophilia. They wanted to be free to play with toys and their friends.
When internal bleeds occurred, they would wiggle as they were being treated, but once everything subsided and there was no more pain, they resumed what they had been doing. My wife, Cazandra, and I handled the tough conversations. Their understanding of treatment for an internal joint or muscle bleed came from us saying, “OK, it’s time to give your blood some muscles.”
When Julian, who’s now 29, was 3, we took him to Disney World, and in the pool at our resort, he began to play with a little girl his own age who noticed the strange shape in his chest. “What’s that?” she asked, and Julian replied, “Oh, that’s just my port.” She said, “Oh, OK,” and they continued playing in the beautiful, clear blue water.
I remember my heart felt like it had leaped out of my chest at their interaction. I marveled that the girl asked a question and that Julian offered up a reasonable answer, and also realized that that moment was a giant step in my boy’s personal development. He was becoming his own advocate. He did not need me to step in. He had it under control.
I realized that one of the most important gifts I could ever give my children was to help them become their own advocates.
Growing into being their own advocates
As they became preteens, Julian and his brother, Caeleb, who is 10 years younger, began to realize that something was different about their bodies. In elementary school, no child had a port-a-cath like theirs, but other children at hemophilia camp or national meetings did. They soon came to realize that living with hemophilia was more involved than just treating a bleed, or that infusing prophylactically meant simply giving the blood some muscles.
We invited them to participate in their treatment and made the effort to explain the importance of sitting still so a vein or port could be infused quickly, and during hemophilia camp, the boys were shown how to find veins or ports to treat themselves, reinforcing their ability to take control of their care.
When they got older, we taught them how to call their hemophilia treatment center to schedule yearly checkups or to obtain information to help them make the best possible health decisions. We also insisted that they call their pharmacist to order their medication and supplies. Throughout these times, my wife and I stayed right there with them to help them when they didn’t know what to do next.
In high school, the boys took over their care with minimal interference from us. I sometimes wanted to step in, but watching them handle their issues showed me that independence fostered resilience. We backed off, allowing them to take control of their needs, which strengthened their confidence and self-reliance.
These days, Julian is on tour with a national theater production, and Caeleb will begin his third year of college in the fall. I am confident that they are managing their bleeding disorders well.
I admit that there’s a little sadness. I sometimes miss those days when I took care of everything about their treatment, but I know that their success is because my wife and I made an effort to teach them to be independent.
My advocacy for my sons continues to change, and the love and respect I feel for them deepens with each passing year. I am a proud father with two amazing sons with bleeding disorders. My gift to them was to give them wings, so that they could navigate their world independently. I feel absolute gratitude for the mighty men they have become and look forward to the journey that lies ahead.
Every day, I remind them that I love them more than I did yesterday.
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 consult your physician or another qualified healthcare 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, and are intended to spark discussion about issues pertaining to hemophilia.
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