Sometimes as a Caregiver, I Learn From My Son

When the person with the pain is the best gauge of his own needs

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by Joe MacDonald |

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As I entered my son’s bedroom this morning to turn on his light and wake him up, I heard him say a phrase that sent shivers down my spine. Caeleb, my boy, said, “Dad, my ankle hurts.”

My first instinct wanted to allow him extra time to get himself together. Still, I knew that he needed to understand that, although he suffers from chronic pain, he cannot let remnants of internal bleeding episodes from hemophilia prevent him from living a whole life. So my mighty son had to weather the uncomfortable pressure he felt and go to school.

I wrestled with my feelings concerning his experience, hoping my insistence on his working through pain did not stem from my willingness to deny his responses to discomfort. I thought of the many times I walked on eggshells, hoping to avoid his joint bleeds and the horrible pain that followed. Perhaps my feelings about the past prevented me from fully addressing his needs in the present. When he tells me he feels pain, I realize my body prepares for battle as it tries to attack the enemy within Caeleb’s body.

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I approach my boy’s cries of pain as I do when driving through unexpected thunderstorms. I keep the car moving forward with the expectation that I’ll outrun the rain, lightning, and thunder until all the ugly skies clear. When pain or a bleed appears out of nowhere, I lead my son through the difficulty and never entertain the thought of resting. Instead, I put blinders on, trusting that the worst of his medical issues will pass. We can experience relief if we stay on the road.

But my approach to fighting off pain often fails to consider the needs of my boy. There might be times when Caeleb cannot continue. He may need to take a moment to stop and gather his thoughts or rest. My approach fails to consider that we may approach the road to wholeness in many different ways. I must remember that I don’t have a bleeding disorder. He does. He knows his pain far better than I do.

I must remember that he controls his body and how he approaches pain. I am a caregiver, and not the patient; therefore, it’s crucial to rely on the information he brings to the table. I prevent him from growing by not allowing him to express his needs.

Part of his becoming an adult is to address his symptoms and handle them to the best of his ability. I want him to be independent, but I’m afraid that when my needs and feelings come before my son’s, I forfeit his right to handle his own needs and feelings. Maybe the primary role I play as a caregiver is to support him as he makes health decisions for himself.

This morning, my son put on an ankle brace and took medicines to help with swelling and pain. I hope that his approach helps him find relief from the distress he feels. I applaud him for not giving up and begging me to return to bed. Instead, he stood up on his own two feet, and through the uncomfortable situation he experienced in his ankle, he managed to get dressed, eat breakfast, take his medicine, and, equipped with a walking cane, head out the door to school.

Hopefully, Caeleb connected with me as both caregiver and dad. As a father, I want him to know I wrap a spirit of promise around him every day to get him through whatever he experiences. As a caregiver, I hope that he feels the support to continue his journey. Together, these two facets that live within me may continue to offer all I can to ensure my boy’s success in life.

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.


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