Remember to relax your face, even on difficult days with hemophilia

I have a bad habit.

When I shop for groceries, I grab what I need but often get distracted by a bright package. A new cookie? How many carbs are in it? The same thing happens when I watch a movie or listen to a podcast with lots of twists. Did the thief get away? I even do it at the farmers market while looking at the art and crafts. How did they make that? I could try it!

It always happens: I scrunch my face.

With my eyebrows furrowed, eyes squinting, and mouth tight, my face must look pretty odd. People might think I’m confused. Is something wrong? Can I help you?

But in truth, I don’t have a worry in the world. My face freezes in a twist, and it’s not because the sun is too bright. I am just deep in thought, absorbed by what is in front of me, with a laser-sharp focus.

When I notice my scrunched-up face, I remind myself to relax. I pause and fix my expression. As my muscles relax, I feel a warm sense of relief. My shoulders drop, I breathe easier, and I feel lighter.

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I don’t just scrunch my face when I’m choosing cookies. Whenever I’m facing a tough decision, my stress shows on my face. This habit is most pronounced on the hardest days with hemophilia. My sons, Julian, 29, and Caeleb, 19, both have severe hemophilia A with inhibitors, though their experiences with the disorder have been very different.

When Julian was little, hemophilia was an unwelcome guest in our home — one we hadn’t heard of until he was born. After his diagnosis, I quickly learned to control my reactions. His first infusion was scary — he had to be held while a butterfly needle went into his arm. I remember thinking, “Stay calm, and he won’t be scared.”

Afterward, the nurse left, and Julian went right back to playing with his trains. He didn’t miss a beat. He was starting to see that infusions were just as important as brushing his teeth. My calm reaction helped Julian to not be afraid and to understand why his “pokes” mattered.

But trying not to scrunch my face proved harder than ever with Caeleb. His ongoing inhibitor problems led to many painful moments — both for him and for me as a parent. I couldn’t take away Caeleb’s fear of being held down for IVs, or the pain of his swollen joints that took weeks to heal. I had to keep my face calm, not just with the doctors, but also during Caeleb’s tears and screams.

I’m not sure why I notice my scrunched face more now. Julian and Caeleb are adults, taking care of their bleeding disorder and finding their own way in life, just as I always hoped. Still, memories of the hard times remind me of our journey, and that’s when I catch myself scrunching my face.

Every day, I try to approach life with a calm spirit. If I could get through the tough times with hemophilia while remembering to relax my face, I know I can handle anything. But when I do catch myself making that scrunchy face out of confusion, fear, or anger, I remember my sons and their strength.

Remember to fix your face, friends!

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.