Allowing the Role of Caretaker to Change

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by Joe MacDonald |

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This past week my adult son, Julian, made a decision that I didn’t like. I wanted badly to tell him how I felt and that his choice may not be in his best interest. I don’t think it’s essential to mention what he did as much as my reaction to his lack of judgment. I concluded that I had to let go and allow him to struggle with issues regarding his life. He’s an adult and must chart his own course.

I sometimes struggle with the idea that I no longer carry the amount of influence I once had in my son’s life. I realized that I did all I could to impart the correct knowledge, and managing a moral compass often becomes difficult. When Julian makes a poor choice, I want to own it and bear the weight of the world on my shoulders. I understand that my role has changed, and I must delegate myself to be a conscious observer rather than a decision-maker. That title now belongs to my son.

I think of the worries that come with managing issues relating to hemophilia. I must tread lightly as I casually ask, “Have you talked with Dr. Quintana (his doctor at the Ted R. Montoya Hemophilia Treatment Center) regarding insurance?” I cannot emphasize the importance of putting things into play before it’s too late. I must find a subtle way to ask whether he orders Hemlibra (emicizumab-kxwh) and injects his medicine on time; that’s another issue needing attention.

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I try to maintain the role of cheerleader, and yes, that includes offering spontaneous cheers in times of distress. But the fact is that I am scared both for him and the relationship that I hope to maintain with my son in adulthood. I feel like I often walk on a tightrope, and one slight move could cause the relationship to fall to the ground.

I choose my words very carefully when talking about hemophilia. Each phrase must empower him as he navigates the murky waters of adulthood on his own. My wife and I entrusted him to take care of any issues arising out of complications with his bleeding disorder. We taught him how to order his medical products and when and whom to call when seeking medical advice.

My struggle now is that my role as a caregiver changed as Julian became an adult. I often want things to remain as they were when he lived under our roof. I know that change is inevitable, and Julian must find his voice when dealing with bleeding issues, insurance, or finding resources that might prove helpful. He is the master of his destiny. I must let him chart his course, even when I think the ship should sail in another direction. My new identity is one of support and guidance when asked.

I appreciate the relationship that I share with my son as an adult. I enjoy watching him navigate his way through the world and appreciate the many phone calls I receive from him to check in and tell me about his day. I hold each call as sacred and something that I continue to cherish, even if I don’t agree with everything he says. I trust that he has a good head on his shoulders and continues to learn life’s valuable lessons as he navigates the world.

As a caretaker and devoted father, I continue to journey alongside my son. From my perspective, he needs to know that when choices lead him into the darkest parts of his world, I continue to stay by his side, offering words of hope and comfort. My role as an advocate continues to change to accommodate his needs. Julian knows that I am his biggest fan and walk beside him on his journey to remind him that he is never alone.


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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