I Tell My Son, ‘You Are More Than Enough’

Joe MacDonald avatar

by Joe MacDonald |

Share this article:

Share article via email
caregiver health | Hemophilia News Today | banner image for the

My older son, Julian, and I share many interests. We are both musicians and sing the same voice part, lyric tenor. Many people who hear us sing together tell me that it’s difficult to determine who’s singing. Our voices blend as if they’re one instrument. Genetics has a lot to do with our sound and why we blend so well. I love to sit at the piano and play a song that we can harmonize on together. The sound brings me nothing but joy.

He also shares the same insecurities regarding the music business as I did many years ago. Julian asks me, “Dad, do you think I have what it takes to make it in show business?” I smile and respond with a resounding yes. I also understand his struggles; his dreams were mine 30-plus years ago.

When he asks me about his abilities, I know that his questions concern more than his talent. Without his saying one word, I know that he worries about his voice and possible issues related to hemophilia. The question might go something like this: “Dad, I’m afraid that hemophilia will stand in my way regarding what I want to do with my life. Do you think that I can succeed, bleeding disorder and all?”

Recommended Reading
ASC618 gene therapy | Hemophilia News Today | illustration of news annoucement

FDA Places ASC618, Gene Therapy for Hemophilia A, on Fast Track

Julian’s questions regarding his ability contain an ingredient I never had to ask: “How do I manage a career and hemophilia?” While I struggled to find my sense of self-worth, I never had to wrestle with the possibilities of working through a joint bleed or possible head trauma. He must consider maintaining health insurance while I decided not to have coverage for a year or two. Julian must always maintain adequate healthcare coverage to provide for his medicine, Hemlibra (emicizumab-kxwh), and other needs concerning treatment when emergencies arise.

Sometimes, I want to say, “Son, forget pursuing music as a career. There are way too many things to consider medically, and I’m afraid that hemophilia may prevent you from reaching your dreams.” However, I know that I cannot dissuade him as he reminds me that he cannot picture himself doing anything else with his life. I hear his passion for making music and know that there’s nothing else he wants to do. For my talented son, there is no other career option.

Through all the preparations to launch my son’s career, I discovered a new joy in helping him find his way in a very tough field. While I appreciated every opportunity to perform on stage, my love and hopes for Julian gave me a new purpose; supporting my son replaced my aspirations with the possibilities ahead for him. I enjoy the ride and celebrate with him all the victories, small or large, that come his way.

I remind Julian that he’s more than enough to manage his career with every step. We share a deep love of the arts, and through struggles, we remain safe in the knowledge that we’re not alone. We both stand as testimonies of each other’s accomplishments. My joy is to be a living witness to the many achievements that lie before my son.

I have no idea what lies ahead for Julian, but I do know that I remain his strongest advocate. I use my experiences in the arts to be a source of inspiration and support for my son as he continues to soar to new heights. Through every note, whether in-key or off-key, I remain by his side to offer strength.

I feel like I passed the baton of my dreams to my son, in many ways. I say to him, “Run with all your might and never stop. Your dreams are within reach if you continue to move forward. Take each step, knowing that you are never alone because your dad stands next to you, offering all the support a heart can share. My son, you are more than enough. You are the best.”


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.

Comments

Leave a comment

Fill in the required fields to post. Your email address will not be published.