With Hemophilia, Sometimes You Have to Accept Things as They Are

This morning I walked with my youngest son, Caeleb, into his school. He depended on a walker to help relieve the pain he felt in his right ankle and knee. The ravages of multiple internal bleeding episodes have left my son with tremendous pain.

His ability to walk has decreased dramatically. At first, he used a cane to give him support, but as he struggled, he needed something sturdier to help with mobility issues. We finally purchased a walker to support him as he maneuvered between classes at school.

I admit that I wanted to shout to the rooftops that he didn’t need a walker. I tried to deny that his pain had become so bad that he couldn’t run and keep up with his friends. Like a hurricane, hemophilia roared into our lives and left devastation in its aftermath. We picked up the pieces and thought that the worst lay behind us. Now, I find that, although the internal bleeding episodes are in the past, the remnants of destruction still show their ugly heads.

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I hoped that, after so many years since his last internal joint bleed, Caeleb would be free of his bleeding disorder. Unfortunately, as we walked to his school nurse, I realized this isn’t the case. My boy continues to struggle with the earlier damage. The walker he uses represents the immense fear I imagined many years ago regarding his ability to break free of the need to depend on something to assist him as he walks.

I looked at him and wanted to say, “Enough of this. You don’t need this walker to help you. Trust yourself and move on your own two feet.” Instead, I kept my feelings to myself as we continued to move at a plodding pace. Secretly, the battle within my head raged on as I felt enormous guilt for getting so angry about the situation. I quickly realized that my anger was a cover for anxiety, which in turn was a mask for fear. My helplessness gave way to increased worry as I realized that I couldn’t control Caeleb’s pain.

My son’s growth process couldn’t fit into a cookie-cutter mold of healing from hemophilia-related traumatic events. His body determined his feelings, not my expectations of how he should feel. I realized that my task as a loving father and caregiver didn’t include demanding that his bleeding disorder behave in a certain way.

My mission proved short and straightforward. I stand beside my son as a partner to advocate for him and offer him the best I can, no matter what happens. In other words, I had to stop thinking that I had any power regarding how his bleeding disorder may act. My primary goal centered on providing for his welfare and offering him the best I have to give.

As Caeleb and I walked from the school nurse’s room to his first-period class, I stopped him and told him I loved him. I reminded him to have a great day and to do his best. Even though I felt like taking his walker from him, I knew he needed to figure out his issues. I had no right to expect him to behave or for his bleeding disorder to act a certain way.

My son’s response to his treatment of symptoms related to internal joint damage must remain in his court. My job must be to empower him as he grows and develops into a wonderful young man with hemophilia. Although I cannot control a bleeding disorder, I can undoubtedly stand beside my mighty boy, who struggles with joint damage.

Ultimately, I realize that it’s not me who has power, but my son Caeleb. Out of love and concern for his continued growth, I must step back and allow him to take control. He must receive the support he needs to become the incredible man I know he’ll be.

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.