Walking Down a Hospital Hallway Brings Back Memories

This morning, I took my 16-year-old son, Caeleb, to physical therapy at Carrie Tingley Hospital in Albuquerque, New Mexico. He continues to experience recurring pains from past internal bleeding episodes in his right knee and ankle. The goal is to find the source of the pain and a way to heal his leg, thus freeing him from limited mobility. When times get tough, he uses a cane to help support his aching joints. My son’s goal is to be pain-free at the end of his treatments.

As we made our way back to the registration desk, I couldn’t help but recall the many times we’d walked those halls. Our past goals sounded like the ones we set today — to achieve freedom from joint damage due to continuous bleeding episodes.

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Each thought that ran through my mind was a picture that told the story of our struggles. Everywhere I turned, I encountered my son’s younger self, who was trying to find hope in his battles with hemophilia.

I looked down the hall and saw myself pushing my 7-year-old in his wheelchair. I remembered that the pain in his right leg proved too great to walk and the only relief he could find was in the swimming pool. He couldn’t put pressure on his right knee or ankle for fear that he might start another bleeding episode.

I remembered my fear in this picture as I pressed on like a zombie, attempting to do the next right thing. When we got to the pool, I helped him hop over to it, as he couldn’t apply pressure on his right leg. I enjoyed watching the games his therapist played with him in the pool, hoping to relax his right leg and restore strength to his limb. I remember sitting in my seat expecting a miracle, which proved slow and long in coming.

I looked around and saw another photo of when Caeleb was about 9 years old. Between the last picture and this one, my son had started walking again. We returned to physical therapy to continue his success. In this photo, I stand with my boy as we talk to a physical therapist who treated him when he could not walk. She looked at my son and smiled, responding in disbelief as she acknowledged his incredible progress.

As I spoke with the therapist that day, I broke down and started sobbing. Years of frustration and heartache poured out of me as I realized how much my son had struggled and fought to improve his mobility. Finally, I felt like someone had acknowledged that the war had ended and I could return to a life I’d missed. A sense of freedom seemed to run throughout my whole body. My tears acknowledged past struggles and present gratitude. I felt like I could exhale after many years of holding my breath, waiting for the next bleed to occur.

My picture today displays absolute gratitude for where Caeleb’s journey has led him. The portrait is a living testament that life doesn’t stand still. We move forward, embracing change as it comes. While my son still struggles with pain, he hasn’t suffered an internal joint bleed for many years. His current issues center around the ramifications of past joint damage.

As Caeleb and I left the hospital, I thanked the many pictures that reminded me of my son’s progress in life with a chronic bleeding disorder. I also expressed gratitude for my son’s medical team, as the incredible doctors, nurses, and physical therapists continue to empower him to live his best life. The pictures remind me of the power of community and how we make a difference in the lives of our loved ones.

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.