Originally published by Hemophilia News Today, April 17, 2024
My favorite shows are “Criminal Minds,” “Bones,” and the “Law and Order” franchise. In these police procedural crime dramas, the suspense and action are exciting and the plot twists surprising. Episodes regularly depict hostage situations. Watching actors portray the fear and horror one must experience when being held captive is frightening, especially when I try to imagine being in the same situation.
Could I ever be in a similar situation?
While most people will never be physically held against their will, many caring for loved ones with chronic and rare disorders understand the concept of captivity. While no guns, zip ties, or duct tape are used, the unpredictability of a rare disorder can keep a person on high alert.
Looking forward to better days
When my youngest son, Caeleb, was in his early elementary-school years, I felt like a prisoner. My life revolved around my job, which allowed me to work from home and care for my family. However, most of my energy went to Caeleb, who has severe hemophilia A. As he experienced recurring joint bleeds that resulted in excruciating pain, I did everything possible to help my son manage them and heal.
Bypassing agents and RICE therapy (for rest, ice, compression, and elevation) were the tools that helped my son recover. Healing from his joint bleeds took time, especially with his inhibitor.
I vividly remember Caeleb on the sofa, his leg elevated on pillows. Movies and cartoons played in the background while I worked at my computer. A timer alerted me every 20 minutes to remove the ice pack from his knee, give his skin a break, and then return the ice pack. It was a tedious process, but it helped manage his pain.
The most challenging part of those years was watching my son hurt. Why was my 7-year-old suffering like this? His cries and screams broke my heart, though I tended to him seemingly without emotion. If I allowed myself to react and express my feelings, my tears would never stop. I kept my emotions in check to give my son the best care possible and keep him from worrying about me.
Caregiving can keep us in a heightened state of alertness, but that constant worry can be detrimental to our health. I had significant anxiety, waiting to hear Caeleb say his knee was buzzy. The word “buzzy” indicated a bleed was beginning. My son had one bleed after another, seemingly without end.
I had to find a way to hold on to hope. During this period of heightened anxiety, I found a way to cope with the stress: I wrote. I journaled about my fears, and my tears stained the pages of my spiral notebook. I wrote until I felt like I could take a deep breath.
I had to look to the future and dream about what might come for my son. I dreamed of him running with his friends and going to their houses to play. I imagined him jogging at the park with the dogs. I dreamed of him simply walking up and down the stairs at home.
I’m grateful that a new treatment, Hemlibra (emicizumab-KXWH), eventually gave Caeleb his life back. While he has a limp and deals with chronic pain, using his cane, walker, and wheelchair when necessary, he doesn’t let pain stop him.
When Caeleb walks across the stage at his high school graduation in May, I’ll see something different from most. Not only will I see a young man who’s earned enough academic credits to graduate, but I’ll also see an 18-year-old who’s lived through things most adults will never experience. I’ll see a young man who’s standing tall without hemophilia and an inhibitor getting the best of him.
Hemophilia is no longer holding my son hostage. He’s embracing his journey and walking into his future.
