Celebrating My Boys While Never Forgetting Hemophilia

Last Sunday, my oldest son came to town for a photoshoot. He hopes to build a strong website presence so that directors and casting agents consider him for future projects in musical theater. We made plans to eat lunch before meeting with the photographer. My youngest son joined me, and with both of my boys by my side, I felt like the luckiest dad on the planet.

Neither of my sons look anything like me, and I thank my creator that they look like their mother. Although they’re nearly a decade apart, I can’t help but notice that they almost look like identical twins. Both have dark hair and beautiful green eyes. Because I’m 5 feet, 8 inches tall, they both tower over me at around 6 feet tall. Their mannerisms and laughter looked and sounded the same as we sat and talked about life and the next big thing on the horizon.

I loved the sound of their voices as they shared their hopes and dreams for the future. My youngest boy hopes to get his driver’s license within the next several months, while the oldest hopes to one day sing on a Broadway stage. Of course, I smiled because I love being their father, but I especially loved the enthusiasm that permeated the air. The lingering smell of hope proved sweet and exciting as we talked about their goals and dreams.

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While we discussed my youngest son’s driving pursuits and my oldest son’s professional website launch, I couldn’t help but think that another presence in the room linked us. Hemophilia always stays with us and refuses to leave. The common dominator unites us when making plans, as we must consider the boys’ medical treatment.

I reflected on the discussions I need to have with my youngest. If he gets into a car wreck, he must wear some form of identification so that first responders know his diagnosis and treat him appropriately. I thought of my oldest son as I reinforced the importance of maintaining consistent treatment so that an unwelcome bleed won’t start in the middle of a necessary audition or show.

Both severely factor VIII-deficient boys prepare themselves at every stage of their lives to consider the nearest hemophilia treatment center, the personnel who work with the home pharmacy, and changes in medical protocols associated with their bleeding disorders. These issues must remain a priority for the boys to continue down a road of good health.

The goal is to keep complications, such as internal bleeding episodes, at bay. While healthy choices can’t prevent obstacles entirely, they can significantly reduce the chances of unwanted medical emergencies.

While we must continue paying attention to all of these issues, I hope that I never forget to stop and enjoy my stinky boys.

And so, I gathered my thoughts at the table and joined in the laughter that rang from us three MacDonald guys. We broke bread and enjoyed one another’s company as we discussed the essential details of their lives.

As they shared their lives with me, I secretly said a prayer, thanking the heavens for another day to look into their amazing eyes and take in the thought that I get to be their dad. Hemophilia remains a part of their lives, but I serve as an advocate, dad, encourager, and lifelong partner, constantly reminding my guys never to forget to keep first things first.

To live their best lives, they must remember to love ferociously, treat their disorder before it gets out of control, and continue to reach for their dreams. These are my wishes as a grateful dad.

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.