Originally published by Bloodstream Media, October 8, 2021
My youngest son, Caeleb, is a fifteen-year-old teenager doing his best to figure out life. He is a sophomore in high school, is in the marching band, and is an artist. Caeleb has severe hemophilia A with an inhibitor. It is a rare bleeding disorder that often causes bleeding into the joints. During second grade, Caeleb was in the hospital more than he was at home or in school. Constant bleeding into his right knee and right ankle turned into two target joints. His bleeding episodes were so severe that controlling his pain at home was impossible. This caused Caeleb to be admitted to the hospital regularly.
While managing pain with medication and R.I.C.E. (rest, ice, compression, elevation) therapy was how my husband and I helped Caeleb through his bleeding episodes. Eventually, these methods of pain control no longer worked. I vividly remember being by my son’s side in the hospital as he groaned in pain for hours on end. I kept his knee elevated, changed his cryo-cuff every 20 minutes, and monitored the morphine pump to keep track of the amount of medication he received in an hour.
I sang funny songs, made up stories and tall tales, and used Legos and his iPad as distractions. Sometimes these methods helped, but never for long. Watching a child in pain is soul-crushing. To help my son get through these episodes of intense pain, I could not let my emotions get the best of me. I found that putting up a wall between my feelings and the reality of what my son was experiencing was my best solution. Some may think I was heartless. Inside I was dying.
I wanted nothing more than to let my heart feel the sorrow I had for Caeleb. I wanted to cry with him, but when Caeleb is in the throes of pain, he becomes a person unable to connect with those around him. He only connects with his pain. Changing my persona when his pain was active was the only way I could help him. Against my motherly instinct, I separated myself from my son by trying to view him through the eyes of a clinician. I had a job to do and there was no time for emotion.
Once Caeleb entered the fourth grade, daily infusions kept his condition under control. Going to school became a regular activity. Finding “normalcy” after such a traumatic time was a relief, not just for Caeleb but the entire family. However, a few years later, Caeleb began to have significant issues with hemophilic arthropathy. It is a debilitating disease that has a significant negative impact on mobility and quality of life. I watch as my son struggles to walk while in pain.
How do I help my son? He is living through a time when friends and school and extracurricular activities make up his life—but seeing him hobble on a cane after band practice breaks my heart. With medication and physical therapy, Caeleb is doing his best to keep his pain under control.
As a mom living with chronic neck and back pain, Caeleb sees me when I have good days and terrible days. One day I asked him to describe his pain. He described his pain as “uncomfortable” and like “needles.” While a 52-year-old woman’s pain and a 15-year-old teenager with hemophilia arthropathy are different, we have much in common.
Living with pain is not a choice. Getting through each day is sometimes an extraordinary feat. I have seen my son at his worst, and he’s seen me at mine, and I do think it’s helped each of us cope and manage, in our own ways. It is imperative that I use my tools to manage my pain regularly. Not only does this help me physically and emotionally, but I hope that it is an example for my son to follow. Along with medication, medical marijuana, talk therapy, acupuncture, physical therapy, and chiropractic care, the most important aspect of my condition is the openness with which I share. I want my son to know that he is not alone and that one day his story may help someone else, too. If my journey with pain is meant to help my son grapple with the realities of his pain, then I will keep talking and encouraging him to do the same.
