Looking back at how we got here reminds me of my family’s strength

“Merrily We Roll Along” is my new favorite musical. The plot of this Stephen Sondheim show centers on three college friends and the disintegration of their relationship. What’s interesting is that the play is in reverse chronological order; we witness the final destruction in the first scene, with the end being hopeful as the exuberant friends look forward to college graduation.

The musical is a chilling look at what can happen when hope gives way to greed and love gives way to unfaithfulness. While it ended happily, I was nonetheless unsettled — because I knew what lay in store for the poor, unfortunate trio.

The first line the ensemble sings is “How did we get to be here?” With the opening phrase stuck in my head, I began to think about my journey with my youngest son, Caeleb, who’ll graduate from high school next month. I look at him and remember the situations that often felt overwhelming as he navigated his world and managed complications related to hemophilia.

If I wrote a play that looked back at our lives, I wondered which years would stand out in the narrative. Immediately, I started sorting through the most painful parts of Caeleb’s past and concluded that my family’s reverse chronology would begin with my son’s graduation. We’d sit and watch with pride as Caeleb accepts his diploma from his principal. Of course, we’d scream with utter delight, letting the tears flow as we remembered his journey through school.

Later that evening, we’d celebrate Caeleb’s accomplishment at his favorite restaurant, the Cheesecake Factory. Joy would fill the room as our family lifts our glasses and celebrates how Caeleb overcame the many struggles that hemophilia caused him during high school. I’d stand, raise my drink, and say, “Here’s to my mighty son Caeleb, the fierce warrior who wouldn’t let any obstacles stand in his way. I’m proud of you, son, and know that many great things are ahead of you.”

We’d clink glasses and, in unison, say, “Here’s to Caeleb!”

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‘How did we get to be here?’

The next scene would be in 2020. Caeleb would be 13 and in his school’s marching band. He’d call me and say, “Dad, I need you to pick me up.”

I’d ask him, “What’s wrong, buddy?”

He’d respond, “My knee hurts badly. I can’t keep up with the other trumpet players. It hurts too much. Please pick me up.”

I’d stand there for a moment and turn to my wife, Cazandra. After discussing different ways to approach the call, I’d decide to go to the practice and assess the situation. Part of me would wonder if Caeleb was tired and didn’t want to work in the heat. Another part of me would grow concerned that he was experiencing an internal joint bleed.

When I’d get to him, I’d put my hand on his knee to see if it felt hot, which is a surefire way to discover a bleed into a joint. I’d feel scared and relieved simultaneously, as it didn’t feel like a joint bleed. I’d go home, feeling helpless to relieve my son’s pain. If he doesn’t have an active bleed, I’d wonder, then why is he hurting?

The next scene would be in December 2014. Caeleb would be 8 years old and in the hospital yet again. He will have spent more time there than at home during second grade. My boy would continue to have breakthrough bleeding episodes in his right knee and ankle. His last one would’ve filled his knee with blood, such that he couldn’t bend his leg. The only way he’d be able to move was by wheelchair. Caeleb’s medical team would’ve tried almost everything, but they would’ve been unsuccessful at stopping his bleeding episodes.

In the scene, Cazandra and I would be standing by our son’s bed as the hematologist suggests options to help stop the bleeding. Caeleb’s time in and out of the hospital would be weighing heavily on both of us. We’d feel defeated, and our morale would suffer. There would appear to be no way out of this nightmare. At this moment, we’d be experiencing hopelessness.

The next scene would be in January 2006. Many women would surround me as they throw the baby shower that Cazandra should’ve attended, but unfortunately, her doctor had placed her in the hospital on complete bed rest until Caeleb’s birth.

At this shower, everyone would be having a great time as they guessed my waist size when wrapped in toilet paper. We cannot wait to see the newest member of our family and know that great things lie in store for our unexpected miracle. Holding a glass, I’d say, “Here’s to Caeleb, my mighty warrior!”

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.