My oldest son helped me move past a hurt from his youth

When my youngest son, Caeleb, was born over 19 years ago, my wife and I found out that he had hemophilia before leaving the hospital. Devastated, we could not begin to tell anyone how we felt about the diagnosis. I remembered our struggles raising my oldest son, Julian, now 28. My mind replayed the times I struggled to find a vein so we could infuse him at home.

I remember the many times I was frustrated with keeping Julian still while infusing him and busting out in a rage. I never said anything demeaning to him, but I’d clearly lost my temper. I admit that my inability to control my emotions proved embarrassing. I later realized that at the root of my temper tantrum lay a deep-seated fear that I could not get the medicine he needed in his system. The more out of control I got, the more he screamed.

To say that these were not my finest moments is an understatement. After each infusion, even though successful, I felt like a giant failure. How could I lose my temper with the most precious thing in my life? I knew that I’d never be able to win “Dad of the Year.” It was traumatic enough for him to have a bleeding disorder, and now there I was, contributing to making the treatment a negative experience.

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Looking back, I wish someone would’ve helped with different ways to manage my emotions while infusing my son. Luckily, I discovered a way to help both my son and me as we tried to do our part in the prophylactic treatment of his bleeding disorder. When I started to feel anger begin to bubble to the surface, I put everything down, walked out of the room for less than a minute, and returned a man in his right mind.

Eventually, we set Julian on a board with straps to keep him still. As he screamed and struggled, I found the small saphenous vein near the outside of his right ankle, and with a quick push, the needle entered the vein. Suddenly, Julian sat still and didn’t cry. He watched as I pulled back the syringe to make sure the needle found its target. As I pulled back, blood filled the line, and I knew everything would be OK.

As I finished infusing, I pulled the needle out and covered the area with a swab. I placed a Band-Aid over the small wound. He looked at me and asked, “Daddy, did I do OK?”

“You did awesome, bud,” I said. “You are strong.”

I hugged my boy and deposited everything into a trash can or sharps container. I looked at him and apologized for losing my temper. He said, “That’s OK, Dad. I knew that you needed to get the factor in my body.” I hugged him and told him I needed to do a better job.

So when my wife and I discovered that our youngest son, Caeleb, also had hemophilia, we received the news like someone had punched us in the gut. I thought of Julian’s struggles and how we’d have to experience the fear of infusing again. The only bright spot was that I now knew my strategy when dealing with unwanted emotions. I’d leave the room, take a deep breath, and return to finish the infusion.

One of the ugliest parts of managing a chronic illness is not knowing what may happen next. I learned about the infusing part, but I didn’t realize the fear that my children faced, nor the anxiety I experienced when stepping far out of my comfort zone to push a needle into my children’s bodies. I could predict how a child might react to a needle, but I couldn’t predict the range of fear, anger, and anxiety that haunted me with each infusion.

Later, when Julian grew into an adult, I told him that my biggest regret was how I reacted when I infused him. He told me that he understood how I felt. He knew that I’d worried about getting the medication, factor VIII, in his body. I thanked him but said I had no right to lose control of my emotions. With wise words, he said, “Oh, Dad, you need to get over that.” I smiled and told him I’d try to offer grace to my younger self because I did better when I learned better. We hugged and then ran to the oven to grab a slice of pizza for pizza night.

I prayed, thanking God for bringing these two amazing sons into my life.

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.