Behind the online pictures, there’s the trauma of hemophilia

I signed up for a Facebook account in 2008. Social media was foreign to me then, but I tried it and was excited to find old friends from high school and college. Catching up on one another’s lives was enjoyable, and seeing my friends’ children resembling their parents was fascinating.

Yet I had no idea how this platform would become a significant part of my journey to understanding the challenges of living with a bleeding disorder.

I searched through my family pictures to find the best ones to post. I’ve always found it easy to put myself out to the world, and in the early days of Facebook, sharing what I called the “bright and shiny” images of family was the norm. These depicted moments of joy, laughter, and celebration and were a way to show the blessings of our family and friends. These choices of images made life seem perfect.

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However, there’s something to understand as we show off the best of ourselves: Exotic trips, families in coordinating colors, and announcements of college acceptance and graduation don’t necessarily reveal the whole truth. Grief and sadness are also in my “bright and shiny” pictures.

Six of the author’s Facebook images, depicting her and her family (with dogs Hildie and Laggie). (Courtesy of Cazandra Campos-MacDonald)

I remember the dreams I had for my sons. Their rare genetic bleeding disorder was never part of the plan. Behind our smiles lie uncomfortable facets of life; trauma and grief are woven into the fabric of my family’s experience.

My youngest son, Caeleb, has endured trauma at the hands of hemophilia. Joint bleeds, an allergy to factor VIII, loss of mobility, numerous ports, and needle phobia are a few parts of his story. I remember his weeks of hospitalizations, nights of screaming in pain, and missed days of school. He also had days of feeling “less than” because he couldn’t participate in sports; his knee and ankle were too damaged. Climbing stairs and walking to class took a toll on Caeleb. That trauma remains with him at 18.

Changes over time

I’ve found over time that when I share a more recent family photo, I see the contrasts from when my sons were little. Many viewers don’t see how Caeleb’s art is more than a hobby or skill, for example, but I can see that it’s his way of expressing the depth of his experience and is a testament to his resilience.

Julian’s path with hemophilia may have been smoother, but his support of his brother and pursuit of his dreams show a different kind of strength. His passion for performing is what feeds his soul, and hemophilia is something he lives with; it doesn’t dictate his life. My sons’ resilience is a source of inspiration and hope for us all.

Alongside the trauma and grief, I feel an overwhelming sense of pride. My sons are now adults. Their experiences have made them into the men they are today. All the bleeds, hospitalizations, and medical challenges have only served to strengthen them. Their resilience and determination command my deepest admiration and respect.

The polished images shared online can never capture the whole truth. But as I continue to post, I find myself more comfortable unearthing the layers of our reality.

It’s not just about the highlights anymore; it’s about honoring the messy, painful, and beautiful journey we’re on. It’s about showing that life can still be profoundly meaningful and deeply blessed even when it doesn’t look like the picture-perfect postcard. We’ve learned to embrace the pain and beauty of our journey — not just Caeleb and Julian, but our entire family.

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.