Embracing moments of joy amid the ever-present reality of hemophilia
Reflecting on my son's excitement during one of his first Christmases
For many years, my wife, Cazandra, played in the orchestra at Houston’s First Baptist Church in Texas. Her musical ability was second to none. I loved hearing the passages she played as she soared up to beautiful high notes with phrasing that made my heart melt. We had a standing joke in our marriage because of the long rehearsal hours leading up to performances. We wouldn’t spend much time together until the day before Christmas, so we’d say, “See you after the pageant.”
When my oldest son, Julian, now 28, was 1 year old, I promised Cazandra that he and I would come to the church to see her in between performances. It was hard for us to go so long without spending time together, but she couldn’t bear not to see her son. Going without seeing him for one week was painful, but two seemed impossible. She needed her “Juli-fix.”
I honored my promise to Cazandra by dressing Julian in warm clothes and taking him to see Mommy. My son had a great seat on my shoulders as we walked to where we’d meet. When he saw Cazandra, he smiled and said, “Mommy.” I lifted him off my shoulders and he ran to her, ready to be caught up in her welcoming arms.
I thought, “In this space, there’s no hemophilia. There are no needles to put into my son’s port-a-cath. The only thing that exists is the love of a father, mother, and son.”
Sometimes we find respite from bleeding disorders with gratitude in the simplest things. We don’t become complacent because we know that it’s only a matter of time before hemophilia makes its unwanted presence known.
Savoring moments of respite
Cazandra took us on a tour of where the animals used in the pageant were kept. Julian squealed in delight as he saw camels, donkeys, lambs, and dogs. He pointed his finger and kept saying, “Look.” We laughed and got carried away by his excitement at the whole scene. I found myself lost in the joy of being a first-time father. Holding this incredible life in my arms proved overwhelming.
After looking at the animals, Cazandra and I took Julian out to grab a quick bite before she had to report for the next show. We put him in a high chair and watched him eat his food. Cazandra took time to run down her list of honey-dos, and I acknowledged that I’d bought everything we needed from the store.
After what seemed like a second, it was time to take my wife back to the church. I hugged her and told her that her boys would see her when she got home.
Julian and I made our way home, and after a bath and a goodnight story, he went to bed. I hugged him and told him I loved him more than anything on the planet. He smiled and lay his head on his pillow to go to sleep. All was right with the world, and my son rested after a big adventure to see his mommy.
I waited up for Cazandra to give her a full report for the day. We laughed as the conversation moved toward Julian and how wide his eyes grew when he saw the animals. We talked about the next day, and then we went to sleep. She was out as soon as her head hit the pillow.
I remained awake a bit longer. I loved the day and how excited Julian was. For now, my mind was filled with happy thoughts. I knew the next day would start with my son in a high chair and me preparing to stick a 1.5-inch-long needle through his chest and into the port-a-cath below his skin.
Amid all the joy of the season, I had to face a harsh reality as a young father of a boy with a bleeding disorder: Hemophilia would always remain a part of our lives. While we’ve occasionally gotten some respite, it never lasts as long as I’d like.
That’s what it’s like raising a son with a chronic illness. Its presence would always make itself known.
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.
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