I let go of the life I planned and found the one waiting for me

When I reflect on the unexpected detours my life took when my wife, Cazandra, and I had children, I cannot help but feel gratitude for them. They led me to where I am now.

The author and teacher Joseph Campbell once wrote: “We must be willing to let go of the life we planned to have the life that is waiting for us.” He’s saying that we can’t embrace what may lie ahead until we give up holding onto what we imagined for our lives in the past. I realized that to be the best father I can be to my child, I needed to set aside the expectations of what I thought would occur and love the little boy I held in my arms.

When Cazandra and I learned she was pregnant, we laughed at the many roads that lay before us. One night, over dinner at a favorite eatery, I looked at her with fear in my eyes and asked: “What if he is not a musician?” My wife and I met in college as music majors; she played the oboe, and I majored in voice. We looked at each other, trying to process what a non-musician in the MacDonald house might look like, and decided it didn’t matter; we would love our child no matter what he loved.

We knew near the delivery date that we were going to have a boy. What we didn’t realize was that within 48 hours, our lives would take a drastic turn. After a routine circumcision, we learned that our sweet little boy, Julian, had severe factor VIII deficiency, otherwise known as hemophilia A. We couldn’t understand the significance of this at first, so I asked the hematologist who diagnosed our son, “Will he live?” She told me with new technology our child would live a long life.

After the medical team left the room, Cazandra, and I sat in silence, not knowing what to say. I thought to myself, “We had Julian’s path planned out to the last detail. What happens now?” We had joked about our son being a musician, but we never imagined we would need to discuss his health. This new diagnosis challenged the life we’d planned.

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Facing an unexpected turn of events

We soon introduced our wonderful son to the MacDonald home. While we enjoyed watching him learn to roll over, crawl, and walk, a feeling hung over us that there was a burglar in the house attempting to steal our joy. We had no idea how to fight a monster we didn’t know. I wanted to pretend that hemophilia didn’t exist, that the medical team misdiagnosed our son. Unfortunately, I had to face the fact that Julian had a chronic bleeding disorder. Nothing could change that.

Depression set in as we struggled to make sense of these unexpected turn of events. We didn’t know what the future held for our family. Several times, I looked up at the heavens and screamed, “This was not what we planned for our son! How could this happen to us?” Our excitement gave way to helplessness as we tried to understand the direction our life was taking.

In my brokenness, I came across the quote above by Campbell. I identified with his words and realized the depression I felt came from knowing that Julian’s life would include pain, needles, and Band-Aids. I knew I needed to acknowledge our hopes and dreams would change.

I began over time to realize that, while the road took an unexpected detour, there were joys to experience. Our boy was a musician and had the most wonderful voice. He loved theater, so sports had little to no interest to him. His doctor suggested a port-a-cath be implanted into his chest so receiving medication would be easier.

Our new life didn’t look like what we thought it would, but we learned that embracing our unique journey gave us hope for our son’s future. Julian is now 29 and I’m glad he remembers fondly those early years of living with hemophilia. We don’t live in the world we thought we might, but we are grateful for every day of our journey.

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.