Finding gratitude and perspective in a different kind of chaos
My youngest son's hemophilia wreaked havoc on our family's lives
Dinner with friends is a delightful escape from the daily grind, a precious opportunity to share moments of love and presence. Recently, another couple invited my husband, Joe, and me to dinner at their home here in Las Cruces, New Mexico. The prospect of spending quality time with them and their three young children filled us with excitement.
As empty nesters, Joe and I are in a beautiful time of life. We love the quiet, slower pace in our home that allows us to retreat into our own methods of self-care. Joe sorts a jigsaw puzzle piece by vivid piece as he prepares to put together a picture that reflects the current season. I take residence in my quilt room, assembling my next creation. While I adore my sons and am thrilled they are making their way in the world, I’m enjoying this phase of life.
As Joe and I entered our friends’ home, the electricity in the air was overwhelming. One child came in to greet us, another was running around chasing after his dad, and the youngest clung to her mother’s leg for a moment, unsure of our presence. All the while, my friend was laying out tortillas, sprinkling each with generous amounts of cheese as she turned to the grill.
We had forgotten what it was like to have a young child in the home. And because our sons are 10 years apart, we never had multiple little ones running around at the same time.
It was glorious.
But this wonderful chaos (please know that my friends call it chaos!) brought another kind of havoc to mind.
A different kind of chaos
Both of our sons — Julian, 29, and Caeleb, 19 — have severe hemophilia with inhibitors. Two days after Caeleb’s birth, he was diagnosed with hemophilia and a high-titer inhibitor that remains. His toddler and elementary years were the most challenging for our family.
Caeleb had recurring bleeds into his right knee and ankle that couldn’t be treated with factor VIII because he’d developed an allergy to it. Thankfully, bypassing agents helped, but each bleed lasted weeks. He was often hospitalized.
Caeleb lost mobility and relied on a walker or a wheelchair to get around. He rarely made it through an entire day of school due to pain or joint bleeds. The complications were tremendous, taking over our lives.
During those years, I felt like Flat Stanley, a character from a children’s book who was accidentally flattened and thus able to travel through the mail. The book inspired a project in which kids paste a cutout picture of Flat Stanley onto a Popsicle stick and bring him to various locations. They take photos and write about Flat Stanley’s adventures in a journal to share with others. Poor Flat Stanley: He went to places not of his choosing.
I, too, felt like I was being moved around by forces beyond my control. I went where I was directed, without choice. The chaos of hemophilia dictated my every move. I journeyed to places that are burned into the depths of my soul.
Those painful memories are not single events. I cannot count the number of times I sat by Caeleb for hours as he screamed in pain. His face was beet red, with veins protruding from his neck and heat radiating from his body. There were hundreds of times I witnessed unsuccessful needle sticks that warranted a team of nurses to restrain my son. I’d wipe his tears as he sobbed, unable to form a sentence in one breath, saying, “I … hate … hemophilia!”
Whenever Caeleb said his knee felt “buzzy,” that was code for “Hold on tight; the chaos is about to begin again” — even if we’d been home from the hospital only 24 hours.
Chaos comes in different forms. Organized chaos, for example, can involve a group working together for good. But the chaos of hemophilia with an inhibitor is, in my experience, nothing but devastating. The bedlam leaves lasting marks.
Thankfully, the chaos of hemophilia has subsided over the years for our family, thanks to a new treatment. Life has become richer, and seeing my sons flourish is all I need.
As for the chaos of a sweet family with children, it is a source of immense gratitude. Playing Disney trivia and receiving pencil drawings for my fridge offer joy that nourishes the soul.
It’s a chaos I’ll always welcome with open arms.
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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