For hemophilia parents, letting go of control is hard, but necessary
It's up to my sons, now adults, to manage their bleeding disorder
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I like to think my wife, Cazandra, and I did a decent job of teaching our two sons, Julian and Caeleb, how to manage their bleeding disorders. We drilled into their heads the importance of maintaining health insurance, as their hemophilia medications are too expensive to afford without coverage. We taught them how to order their treatment from the pharmacy, call their patient representatives when things went wrong, and advocate for themselves.
The only thing we didn’t do was let them suffer from poor decisions. We stepped in and helped when we knew a choice could prevent them from receiving their medication. I do not suggest letting a child with hemophilia fall on their face, as failure to treat their condition could have catastrophic consequences.
The thought of what could happen without treatment motivated my wife and me to take the bull by the horns, so to speak. If our sons didn’t follow through, we would make the necessary decision to order their clotting agent and medical supplies.
I admit that a large part of me grew angry when my sons didn’t play an active role in their own care. What could I do to teach them while maintaining some control if things didn’t go as planned? Little did I know that the very thin edge on which I tried to balance often proved too thin. I asked myself, “How can I help my sons take responsibility for their treatment without causing them harm?”
Letting my sons take control of their health
Things only got worse as they entered adulthood. Doctors no longer spoke to Cazandra and me, but to our adult sons. After Julian and Caeleb moved away from home, I shuddered when I discovered they hadn’t kept appointments or followed through with many of the things we’d taught them as teenagers.
Angrily, I said, “What were you thinking? Look. You have hemophilia. Your blood doesn’t clot like everyone else’s, so you must take medicine. Because your disorder is severe, there are serious, if not fatal, possibilities if you do not infuse. Your life depends on taking care of yourself. Remember, you are your greatest advocate.”
Despite a 10-year age gap, both sons responded similarly. “Dad, I know I have severe factor VIII deficiency. I can handle this. I called the pharmacist and scheduled my appointment at the hemophilia treatment center. I’ve got this,” each said, showing their growing independence.
My natural inclination was to wage war with my sons. I wanted to shove their failures in their faces and say, “No, you don’t have this, because if you did, you would have taken care of your business.” Fortunately, I kept my mouth shut, and after they spoke, I affirmed them and checked myself. I said, “Son, I fear what the consequences might be if you choose not to take care of your medical needs. I love you and want the best for you.”
Both sons apologized and promised to manage their condition. As they entered their early adult years, they promised me they would follow their treatment protocols and that they knew who to call if times got tough. I was surprised when they rattled off all the instructions their mom and I had given them in high school. It showed they had truly listened after all. While my discussion with each young man occurred years apart, the core message remained the same.
Encouraging my sons’ independence was essential. They understood the importance of following the protocol we taught them, and I needed to let go. The most I can do as a parent is lead them to the well. It is up to them to drink the water.
During each conversation, I learned something about myself. With Julian, my oldest, I had to let go and trust that he had control. With Caeleb, I learned that he could take over his care and keep his appointments despite his youth. I realized that their biggest need was to have control over their own bodies.
So continues the delicate balance of parenting.
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, and are intended to spark discussion about issues pertaining to hemophilia.
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