A snapshot by the sea reminds me of my son’s long journey with hemophilia
That single image shows everything Julian has overcome to get there
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My son Julian posted a picture on Facebook this week that took my breath away. I had to look at it twice to make sure it was really him.
In the photo, he was sitting on large rocks on the shore, water swirling around his feet, his hands open as he looked straight into the camera and smiled. For a moment, it seemed as if he were inviting all of us into the picture, asking us to stand with him and share in the joy of that moment.
Julian is currently on the national tour of the musical “Saw,” and in the picture, he is on the coast near Portland, Maine. The sun is bright, and the tide appears calm, but what draws me in most is not the scenery but the joy that radiates from his face. He smiles as if all is right with the world and he is exactly where he’s supposed to be. It is safe to say he is living his best life.
Everything he has overcome
Julian MacDonald is touring with the production of the musical “Saw.” Here, he enjoys a day to explore the shoreline near Portland, Maine.
The longer I look at the picture, the more I see beyond the smile. I see the struggle my son overcame to reach this happy moment, the childhood of internal soft-tissue bleeds, prophylactic treatments, and fear of needles in his journey with hemophilia that lies beneath his expression of triumph.
He faced fears most people may never imagine, and overcame them to find freedom on the other side.
Like the water in the background, hemophilia can sometimes be smooth and manageable, while, at other times, it can be powerful enough to knock a person to their knees. Julian’s stance on those rocks seems to claim victory over the stormy times — times when he could not find a way to infuse or when an infected port threatened to harm him.
When I look at the joy in that picture, I think what an amazing young man he has become.
Julian celebrated his 30th birthday, which makes the picture even more meaningful. Throughout his life, I witnessed many moments when he felt defeated by his bleeding disorder. I think especially of the struggles he faced after living with a port for more than five years. When the medical team removed it and transitioned him to intravenous infusions, he struggled to adjust to a new and difficult reality.
Helping him through that transition was overwhelming. As we worked to help Julian get used to finding a vein, my wife, Cazandra, and I sometimes had to hold him down. It took many months, but Julian eventually found a way to manage his fear and calm his spirit to participate in his treatment. Within a year, Julian infused himself for the first time.
That hard-earned courage still guides him today. Julian is now fully independent in managing his bleeding disorder. When we talk about hemophilia, he remembers the past and celebrates his victory over fear, insecurity, and the limits of what he understood when he was younger. He now infuses prophylactically to prevent breakthrough bleeding episodes so he can continue pursuing his dream as a performer. He understands that to prevent unwelcome injuries, he must treat consistently and follow his doctor’s recommendations.
As I think about his life and his relationship with hemophilia over the past 30 years, I return to that photo and smile. It shows an image not just of a young man sitting on rocks along the shore, but one who has battled fear, pain, uncertainty, and limitation, and who still stands openhearted before the world.
Julian has come a long way on his journey toward wholeness, and he has let nothing stand in the way of his goals. Hemophilia be damned, he continues to do what he needs to do to be successful. In that single image, I see not only where he is, but everything he has overcome to get there.
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 consult your physician or another qualified healthcare 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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