In a phone call from my son, I find renewed hope
As we share our days and love, we reassure and support each other
I’m sitting at my desk at work, focusing on projects I must accomplish before the day ends, when suddenly my ringtone fills the room with the song “Defying Gravity” from the Broadway musical “Wicked.” I see that my oldest son, Julian, is calling me. I smile when I see his name pop up on my phone. I answer and hear “Hello.” Just that one little word transports my mind from the day’s pressures to a place filled with joy.
Julian calls me every day to check in. I learn about his life, hopes, and dreams as he shares the events he experiences while living in the world. As we talk, my son offers his whole heart and expects nothing less from me. He wants to know about the strange things that happen in our denomination, the United Methodist Church, as well as his brother, Caeleb, and how he manages chronic pain because of bleeding episodes in his right knee and ankle.
I respond as thoroughly as possible, carefully covering everything that’s happening. Julian reminds me that he may be away from home while performing at a theater, but that doesn’t mean he forfeits his place in the family. We matter to him as much as he matters to us. Our lives matter to one another.
On hemophilia and loving support
Many times when Julian attended college, Caeleb suffered through breakthrough bleeding episodes, often requiring weeks of hospital stays. Julian called and spoke with his younger brother to encourage him on his nightmare journey with pain. Julian’s main goal was to offer Caeleb hope through the roughest times.
His efforts often proved successful, as Caeleb responded to his voice. Watching my boys find strength in each other is a gift from God.
Julian’s calls regarding hemophilia don’t rest with his brother; he also turns his attention to us, the caregivers. He wants to know the ups and downs we feel regarding the complications of the disease.
My older son is in a unique position, as he too lives with hemophilia A, deficient in factor VIII. As a member of what we call the “bleeding brothers,” he knows what it’s like to suffer from a bleed. He understands Caeleb’s plight fully while offering compassion to his parents, who often feel overwhelmed when spontaneous bleeding episodes occur.
My older son experiences hemophilia as both one who manages a bleeding disorder and one who plays the role of a caregiver to his younger brother. He looks at us and sees the fear his mom and I experience when we fail to treat a bleeding episode. Julian sees the terror in our eyes as we struggle to treat an active bleed as fast as we can. He knows our joys and sorrows in our extraordinary relationship with this bleeding disorder.
After our initial phone greeting, Julian talks to me about his day. He’s now performing in a show in the beautiful Appalachian Mountains of North Carolina. He tells me about the videos of auditions he’s sent to theater companies. He also mentions that he needs us to send him the medicine Amicar (aminocaproic acid) to help with a bad tooth issue. I assure him that we’ll forward what he needs as quickly as possible.
We end our time together by saying three crucial words that serve as the foundation of our relationship: “I love you.” My children can count on one hand the days that have gone by in their lives when they did not hear me say, “I love you.” My heart melts when he responds by saying the same to me. We hang up and resume our different worlds, knowing that our family is the bedrock of our lives.
Reflecting on our phone conversation, I feel a renewed hope to face whatever life throws at me. I know that the MacDonald family does not live in this world alone, because the strength we find in one another carries us to uncharted heights. We know we must face the ravages of hemophilia, but it won’t defeat us. Faith charts our feet onto the right path, by which we live in a spirit of joy.
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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