About this time every summer, my social media feeds begin to fill with lots of smiling faces from hemophilia camps across the country. Photos showing kids pursuing myriad activities — from fishing to wall climbing to crafting — share a common theme. They are fun, relaxed kiddos doing what all kiddos love to do: hang out and have fun with friends. It’s a good reminder that regardless of their bleeding disorder, our kids want what all kids want – to be around their peers and cool counselors instead of their parents for a while.
The same holds true for caregivers, though the expressions in the photos are somewhat different – their eyes and smiles say “happy relief.” A study released last March that was designed to understand the impact of hemophilia on caregivers indicates that caregivers face a variety of challenges. Most interestingly to me, the authors noted in the discussion that the attrition rate of participants was low. The authors also wrote, “Caregiver response indicated it was more meaningful when the measure reflects both the positive and the negative aspects of caregiving for someone with hemophilia.” This, to me, describes every caregiver I’ve met over the years – “happy relief” is almost a refrain, whether there are tears or smiles, good days or bad.
At a recent meeting of the Virginia Hemophilia Foundation, deep in the heart of the Blue Ridge Mountains, Virginia General Assembly Delegate Sam Rasoul spoke to our group about storytelling. One phrase struck me so much that I wrote and circled it a number of times on my scratch pad: “We are all peers in humanity.”
Later that day, I had the honor of listening to fellow community members tell their stories of living with a bleeding disorder diagnosis. I didn’t make it through my own story without tearing up and dashing for a tissue. But tears in this family of friends are no big deal; we are true peers in humanity. It’s also a given that there will be plenty of laughter after the tears because we clearly understand that while some aspects of life are frail, others are strong, and attrition is just not something we do.
As a child born in the year of Woodstock, that event, and the summer of love that preceded it, have been the soundtrack of my life. From Joan Baez’s “(I Live) One Day at a Time” (tears) to Sly and the Family Stone’s “You Can Make it if You Try” (laughter), it is all joyous relief. For our bleeding disorders community — from our network of camps and meetings to impromptu gatherings — during this 50th-anniversary summer of Woodstock, the ideals of peace, love, and togetherness are alive and well as we journey together. We are peers in this humanity.
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 Services, and are intended to spark discussion about issues pertaining to hemophilia.
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