For the longest time, my son Caeleb being in a wheelchair was just part of the normal workings in my home. The constant bleeds that kept him immobile were in the forefront of my thoughts as I watched him struggle to get around.
But after five years without bleeds, our family has gotten used to him being a kid without severe bleeding issues. His quality of life has been tremendous, and seeing him enjoy the world as a typical 13-year-old has made me happy. Hemophilia has taken a back seat, and it has been great. But something new has crept into our lives.
Caeleb lives with chronic pain from years of recurrent joint bleeds that damaged his knee and ankle. His pain became a more frequent visitor over the summer months, and through the fall he has relied on a crutch to get around. I thought it would get better. While regular bleeding episodes are not visible in Caeleb’s day-to-day living, the aftermath of the hundreds of bleeds he has endured is very visible.
The people in our current small town didn’t know Caeleb as a sickly child in a wheelchair, so imagining him struggling is difficult. But he walks with a limp and uses a crutch 90 percent of the time. The outward signs of his hemophilia are again apparent, and it breaks my heart. Seeing him struggle brings back memories of the pain he endured during active bleeds. It is not a time I wish to revisit.
In a world where we can get what we need in a moment’s notice, being unable to help with his pain is difficult. How do you help a 13-year-old boy understand chronic pain? When he asks, “What if I can’t ever get an ankle replacement because they are so unstable?” I try to respond with hope. Maybe by the time he is old enough to have such an operation, treatments will have improved. But when you are young, 10 years from now sounds like a lifetime.
“Mom,” Caeleb asked, “will my pain ever go away or will it be like this forever?” I desperately want to tell him that it will go away. But the truth is that it might get worse.
I live with chronic pain, and I understand how it can change your life. I can’t imagine what it must be like to deal with these issues as a young teen. I hate to admit that I am guilty of not always validating my son’s pain. It’s not because I don’t believe him, I just know that he will have to live with a certain amount of ongoing pain for the rest of his life. I want him to push through and keep living, but I realize it will be more helpful to validate his pain and help him find strategies to cope.
This is a new journey, and I will do my best to help my son. I’ll ask the questions, find coping strategies, and be his biggest cheerleader. I refuse to let pain get the best of him. As his mighty mama, I’ll do whatever I can to help him.
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 Services, and are intended to spark discussion about issues pertaining to hemophilia.
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