At HFA, we have a core tenant and motto of our organization. It is “Lest We Forget.”
In my family’s view, raising a child with a bleeding disorder in today’s world means we have the responsibility of determining when and how we help our children to learn and understand the history of our community. That includes our tragic times of the past as well as the successes and hope for the future.
Looking back, we believe we were very intentional and thoughtful about this with my teenage son, Benny. We tried to provide age appropriate education as he’s grown so he could absorb and understand. First came small discussions about how people did not have any treatment in “the old days.” Then new treatments came along. As he got older, we started discussing the era where some treatments ended up harming people. By his early teens, we began freely discussing the HIV/HCV tainted product years and watched the film Bad Blood together, frequently pausing the movie to discuss various parts. Now he is 15 and becoming his own man. I’ve been known to call an adult blood brother when Benny needs to know something and just hand the phone over to let him talk man to man with another who is living his history too.
Recently we realized we had neglected to have those same conversations with our younger child, Jonnie, who does not have a bleeding disorder. We were on a road trip a few weeks ago, when something about the HIV crisis of the 1980’s came up. As I looked in the review mirror at my boys, Ben was nodding his understanding to what I said, but Jonnie just looked at me blankly. Somehow, we had utterly failed to include him over the years and it was a shocking wake up call. Jonnie is two years Benny’s junior. He’s been to the ER with us more times than I can count, even as a baby in a stroller, tagging along as Benny went again and again in those early years. He’s been to the HTC with us as a toddler and sat at our kitchen table hundreds of times while Benny was being infused. Occasionally through the years, we have made a point to the boys that one day when their dad and I are gone, they will still have each other to lean on. In my heart, my thought was always that if Benny really had a bleeding crisis someday and we were gone, Jonnie would be there for him because he knows all about it. He didn’t though!
I sat in the backseat on the next leg of that journey, and as a family, we had a long conversation about bleeding disorders. It is a start in Jonnie’s learning journey I suppose. One day soon we’ll put in the film and talk through that too. I remain a bit shell shocked that I missed this so completely and wanted to write this blog to share with other moms in the hope that you can learn from my misstep.
In a couple of weeks, Benny is joining me at the National AIDS Memorial Grove as the hemophilia memorial is commemorated. While I absolutely hope it is an incredibly meaningful experience for Benny, I also look forward to sharing the experience with Jonnie and taking him there someday too.
Kimberly lives in Wisconsin with her husband, Howard, and boys Ben (15) and Jonnie (13).
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.