Caring for sons with bleeding disorders has altered my life
Thanks to my role as a caregiver, 'I have been changed/ For good'
It’s no secret that I love musicals. My greatest joy is finding phrases from a show’s libretto that speak to my soul.
One such event happened when I saw the musical “Wicked” on Broadway. Toward the end of the show, witches Glinda and Elphaba sing a moving ballad in which they express appreciation for their friendship. One of my favorite songs is “For Good.” The lyrics that stand out to me are “I do believe I have been changed for the better/ And because I knew you/ … I have been changed/ For good.”
I’m compelled by their awareness of the difference they’ve made in each other’s lives, because I feel the same way about my sons. The ways that Julian, 28, and Caeleb, 19, have changed me for the better are too numerous to count. I think of the way I lived before my sons existed and celebrate the life I live with my family today. Raising sons with bleeding disorders forced me to grow up, offer compassion first and foremost, and love my sons with my whole heart.
I remember the day my wife, Cazandra, and I found out that Julian had severe hemophilia A. I didn’t recall ever hearing the word hemophilia before, and my first reaction was to ask, “Will he live?” The hematologist assured me my son would live a long and happy life.
I breathed a sigh of relief as I turned to Cazandra, but she looked defeated as she tried to process that our son was facing a medical complication that was utterly foreign to us. I didn’t know how to help her. The only thing I could do was hold her hand and assure her that we could handle his diagnosis.
The truth is, in our moment of silence, I realized my mission in life. I was taking on the role of caregiver in addition to being a husband, father, and, at the time, music minister. Later, my title changed from music director to pastor.
‘I have been changed for the better’
Chronic illness spares no one and requires a shift in family dynamics. To put things simply, I had to grow up and play a different role than I’d expected. My duties as a father expanded to include advocating and caring for my boys. I had to learn the vocabulary of bleeding disorders and figure out whom to turn to as I sought a support system, resources, and medical advice. It felt like someone had thrown a bucket of cold water over my head and challenged me to wake up and grow up.
As time passed, I realized that parenting required one thing that didn’t come easily to me: patience. My temper could flare up at a moment’s notice when I felt frightened or unsure. Before I could properly care for my sons, I needed to seek help for anger issues. I consulted a therapist and, together, we discovered several ways I could manage my stress and anger.
Giving myself a quick timeout proved an effective strategy for managing my stress when infusing my sons with factor. I talked with Cazandra about it and told her, “One of my greatest weaknesses is expressing my anger.” When I’d start feeling anxious during an infusion, I’d turn to her and say, “I need a break.” After leaving the room for a minute, I could return with my emotions in check.
It’s like being on an airplane and having to put on my oxygen mask first. When I take time for self-care, I discover that more compassion flows forth for my sons. I can separate the person from the disorder. My listening skills improve and I become more attuned to their needs as we share our hopes and dreams.
At the core of everything is the love I share with my family. It fills my every waking breath. Through the trials of emergency room visits, infusions, and hospital stays, the one constant is our bond. I’ve truly changed for the better. There’s not enough gratitude in the world to thank my wife and sons for the life they’ve given me — a testament to the warmth and love that permeate our family.
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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