How the words we use can affect a child with hemophilia
I've learned to alter my language when describing my sons and their disease
I live in the high desert of New Mexico, where we have over 300 days of sunshine each year. It’s a perfect place to hike, bike, climb, and run. The beauty of this place is undeniable. Yet despite all its splendor, I often find myself yearning for the storms.
Right now, we’re in the monsoon season, which typically runs from June through September. This period brings heavy rains in the evenings, a nice break from the daytime heat of the summer sun.
In the evenings, I like to sit outside and watch the sky transform — what begins as a vast, peaceful expanse of blue with soft, billowy clouds slowly becomes dark and menacing. The air shifts, the wind picks up, and then the lightning comes, bold and bright, crackling through the sky. It’s mesmerizing to watch, but it also reminds me of the turbulence I felt as a young mother struggling to process my emotions and make sense of life with hemophilia.
Processing emotions is different for everyone. Mindfulness, physical activity, talk therapy, journaling, and art and music are some ways people manage their feelings. I found that writing became my lifeline. Through writing, I could begin to unravel the tangled knots of fear, anger, frustration, and helplessness that came with the hemophilia diagnosis of both my sons. It also connected me with others in the bleeding disorders community.
When my second son, Caeleb, began to have significant challenges with hemophilia, I felt like a newly diagnosed parent. Early on, his hemophilia experience was different from his brother’s, and I felt lost because each journey was so unique. I started to write a blog to process those differences and their impact.
What I’ve learned
Looking back, I realize I used some unfair descriptors. I often called my son my mighty warrior while others called him brave and courageous. My use of “warrior” was intended as a mark of respect, a way to honor his endurance. But now, I wonder if I placed too much on his little shoulders.
Hemophilia was all that Caeleb knew. Until he went to preschool, he thought all little boys were infused. For him, infusions and hospital visits were part of life.
There’s a delicate balance between lifting up our children and letting them be. Words like “warrior,” “brave,” and “courageous” are powerful, but they can also be heavy. In our efforts to empower our children, we can place a burden on them, a pressure to live up to these ideals even when they may feel anything but strong.
Revisiting the early years of Caeleb’s complications, I realize that sometimes, the most powerful words are the simplest. Words like “I love you,” “I’m here for you,” or “It’s OK to be scared.” Sometimes letting our children be who they are, without the weight of expectations or labels, is the greatest gift we can give them.
When the rains come now, I’m reminded that storms, like most of life’s challenges, eventually pass. And in their wake, the desert blooms anew. Caeleb didn’t need to be a warrior to weather his storm. He just needed to be himself, and that was more than enough. It still is.
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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Elisha
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