My Son Must Learn That Planning Is Crucial

“MacDonald the Older,” which I call my eldest son, successfully auditioned for the International Performing Arts Institute, a national musical theater symposium. He calls me nearly every night to share the great things he learned in different classes.

My heart leaps up and down with joy when I hear his enthusiasm for making music. He tells me many times that his passion is singing and performing on stage. But of course, I knew his love for music from the minute he came into the world.

He told me that he had the opportunity to speak with someone in the business. My son seemed a little exasperated after the meeting.

“Dad,” he said. “I have so much to do to get to where I want to be.”

I agreed, but I reminded him that all the business necessities pale in comparison to what he needed to treat internal bleeding episodes. We agree that his next step to achieving his goal must involve his treatment plan.

I asked him, “What if someone hires you to do a show, but you cannot meet the physical requirements because of a breakthrough bleed?” He knows that his current medical regimen doesn’t protect him from unexpected medical incidences.

Part of moving forward, for him, requires attention to hemophilia. No matter who hears him sing, he must treat the demands required of a bleeding disorder. He must constantly reevaluate his condition to determine if he requires a different course of action.

My son is different than others in the performing arts field because he must deal with the effects of a chronic bleeding disorder. While many issues in life can wait, treatment cannot. He knows his dilemma but struggles to maintain a treatment plan that satisfies his medical needs.

After many conversations, my son has agreed to see his hematologist, Dr. Quintana, to evaluate his medical needs. As he prepares for his next steps in a very unforgiving career, he must make sure that he handles the demands of hemophilia and stays informed on the best treatment plan available to him.

While this will not assure him a lead in a musical, or a chance to sing at the best venues in the world, it certainly minimizes the chances of his bleeding disorder getting in his way. Furthermore, his vigilance in taking care of himself will pay off in huge dividends, not simply for his career but for any lifelong goals he wishes to achieve.

I wish the best for my sons and their career choices. However, I must continue to whisper in their ears, “Do not forget about hemophilia. Remember the importance of treatment so that no goal is impossible to achieve.”

Laying the critical foundation of medical care allows him to take care of the other necessary issues that affect his aspirations to sing on a Broadway stage. He must remember first things first.

We as caregivers are the greatest advocates for our loved ones. As a father, I play a critical role as a cheerleader and support. Sometimes my backing may require that I remind my son that he must pay attention to his body to achieve his dreams.

No matter what, I will sit in whatever theater my stinky boy is singing in and turn from caregiver into his biggest fan. Of course, I know my bias is out there, loud and proud. I listen to MacDonald the Older open his mouth to sing, and my world becomes whole.

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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.