The Past Returns, Along With a Wish to Do Better

So I get into the shower, and as I wash my hair, a memory comes flooding back to me.

In a moment, I am standing face to face with it. My oldest son was 6 and struggling with a prophylactic infusion of recombinant factor VIII. The needle terrified him as I tried to find a vein. It was important that he remain still, but his fear resulted in a struggle, and either my wife or I would have to hold him down while we accessed a vein. The entire episode was so emotionally draining.

I tell people that my mind is a dangerous neighborhood, and nobody should go into it alone. During those frustrating moments when we would try to provide our boy with his treatments, I would get angry. I grew afraid, and my voice would rise. I only wanted to get the medicine into him to help the clotting so that he wouldn’t have any long-term damage to his joints. But in my haste to treat a bleed, my emotions gained control of every part of me.

Recommended Reading

December 20, 2021 Columns by Alliah Czarielle

How to Help Someone Who Is Chronically Ill

I quickly learned that frustration and hopelessness do not mix. Lit together in the brain’s imagination, they create a lethal substance that gets poured into the very fabric of the soul. I often felt like a failure when anger overwhelmed me. Each infusion held the possibility of turning into a situation that left lasting damage in our lives.

Getting better with each infusion

Together, with the help of a great support system, we learned new coping skills to help us overcome some of those unwanted feelings of helplessness. In my boy’s case, we learned to give him as much control over the situation as possible. Sometimes, it would take almost an hour to find a vein successfully, but we discovered that allowing my stinky son to tell us when he felt ready helped prevent those encounters that took an emotional toll on us. Although he was young, new coping strategies helped him feel more in control of the situation.

Many years have come and gone since those struggles with my oldest son. He is now an adult in his mid-20s and is able to treat himself with recombinant factor VIII products. The fear of needles is a distant memory.

He and I visited with one another recently and I got the nerve to ask him how he felt when my anger made its unwelcome appearance in the middle of an infusion. My son said, “Dad, I knew that you were not angry with me. Instead, you were frustrated with the situation.”

I smiled and gave thanks that he didn’t harbor any resentment against me. But I still felt guilty that my emotions got the best of me.

I play all these events over in my head in the shower, reliving the past to choose a different path than the one I chose. I regain my composure and remind myself that I did the best I could with what I knew at the time.

I remember the wise saying that it is impossible to change the past. All I can do is learn from my mistakes and move forward. I hope I have left the past behind so I can look forward to a brighter future.

On another note, I wish everyone a very merry Christmas, and hope that the spirit of goodwill may overwhelm us all.

***

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.