My first Bleeding Disorders Conference proved life-changing
Reflecting on the sense of hope and community I experienced 25 years ago
I first attended a Bleeding Disorders Conference in October 1998. The National Bleeding Disorders Foundation (formerly the National Hemophilia Foundation) offered the event during Halloween week in New Orleans. My wife, Cazandra; my oldest son, Julian; and my mother, Ruby, entered our hotel with me, not sure what to expect. We were staying just two blocks from the French Quarter, and I was nervous about having my 2-year-old so close to this Disneyland for adults.
My fears quickly vanished as we checked in and reviewed the schedule. The foundation offered participants various opportunities, depending on their relationship to the community. Continuing education courses allowed medical professionals, social workers, and chapter leaders to stay connected and updated regarding new and innovative approaches to treatment.
My family chose the consumer path, which provided us with valuable resources to help better care for my son, who has hemophilia. Our programming addressed Julian’s needs as a young child attempting to understand his bleeding disorder. He met other children his age, who eventually became his friends as our families continued to attend the annual conference in years to come.
On the last night of the conference, the foundation hosted a massive Halloween party, complete with a zydeco band, face painting, good Cajun food, and a space to dance. Many parents dressed their children in costumes. Julian proved no exception as he donned his Batman outfit, complete with a mask and cape. My mother agreed to watch Julian while Cazandra and I had cocktails with new friends. The atmosphere was festive as we celebrated our new family, our bleeding disorders community.
We laughed and had a good time, feeling more hopeful as we learned that we weren’t alone on our medical journey. People around us struggled with many of the same issues we’d faced in our short time managing our son’s chronic illness. With our new friends, we felt something we hadn’t experienced in a while: freedom. We’d discovered a camaraderie that had been missing on our hemophilia journey. Our connection to those around us brought a new sense of wholeness.
An evening to remember
After some time, Cazandra and I decided to find my mother and our son to continue the party. I saw my mother sitting down, her eyes glued to the dance floor, but panicked when I couldn’t spot my son. “Where is Julian?” I asked. Suddenly, the dancers formed a circle, encouraging someone to show off their moves in the middle of the onlookers.
I approached the scene and heard chanting. Then, one dancer shouted to the little masked man garnering all the attention from the middle of the circle: “Go Batman! Go Batman!” It was Julian, having the time of his life. He danced and waved his hands in the air like he didn’t care.
My mom turned to Cazandra and me and laughed, caught up in the action of her grandson commanding the room’s attention. I smiled as I realized that like me, my son had the performance bug. He was in his element, and I knew he’d become a performer. He and I share a bond, a love of being on stage. Years later, Julian and I laughed when I described that night to him.
We left that evening with phone numbers from people all over the country. Little did we know our new friends would still be in our lives 25 years later. We keep in contact and see one another at least once a year. In our conversations, we still talk about the crazy conference in New Orleans during Halloween. We share our gratitude for finding one another when we felt alone.
Joy comes in the craziest of circumstances. My family experienced our first surge of hope since Julian’s diagnosis when we realized that hemophilia has the power to unite people. Even during the most challenging times, when despair takes us hostage, nuggets of joy make their presence known. Our job is to embrace our journey and realize we’re not alone. Our community brings us comfort and a sense of being.
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.