Sharing my vulnerabilities with the bleeding disorders community
Using my knowledge and experiences to help others is healing
I was honored to speak with my husband last week at the National Bleeding Disorders Foundation‘s annual Bleeding Disorders Conference, held this year in Atlanta. It was a memorable experience to share our story with fellow community members. While I’ve spoken at conferences nationwide for many years, this one felt different.
I used to look forward to seeing friends whose children were the same ages as my sons. Over the years, however, most of these families have drifted away. Their children have grown up and learned to manage their condition independently, and so many families have moved on with their lives. While some parents are still very involved in their children’s health, they may not feel the need to engage with the community as much. I miss them and often feel out of place without them.
As my sons with hemophilia have grown into adults, I’ve wondered if the knowledge and experiences I’ve gained over the years are still relevant. Do they resonate with families just starting to face the same fears and challenges I faced years ago? Can my experiences still offer something meaningful to those dealing with the condition in the current era of treatments?
Advocating for my community
At last week’s conference, my husband and I discussed the challenges of losing each other and then finding our way back. Our youngest son, Caeleb, spent a significant amount of time in the hospital during his second grade year, which put a lot of strain on our relationship. We often felt like we barely saw each other as we juggled caring for Caeleb in the hospital and managing our home life for our other son, Julian.
This situation completely changed our family dynamic, and it took a lot of effort to reconnect with each other and our children. We’d never talked about this publicly before, but being open about it in front of our community felt empowering and led to meaningful sharing among our audience.
I’ve spent countless hours attending meetings and workshops, always eager to learn about the latest treatments. However, equally important to me are discussions about the emotional and psychological aspects of raising children with chronic illnesses — how it affects their childhood and development, how to prepare them for adulthood, and how to cope as a family. I realize I have valuable experience in these areas. The recent meeting reaffirmed to me the importance of sharing my vulnerabilities.
What initially began as a quest for answers has evolved into something much deeper: a wealth of knowledge and experience that supports me and allows me to assist others. Whether it’s offering advice, sharing resources, or simply being a listening ear, I’ve found myself as a guide for those embarking on their own journey with hemophilia.
Advocating for my children has always felt like second nature to me. I do it because I’m their mother, and I’ve been doing it for years. However, it’s gradually transformed into more than just advocating for my sons. I’ve realized I have a responsibility — and an opportunity — to be a voice for others in the bleeding disorders community. It’s a role I never anticipated for myself, but one I now wholeheartedly embrace.
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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