There is this one conversation I’ve had repeatedly with dozens of parents over the past ten years. It always revolves around our desire to be protective and shelter our kids. A child’s early years should feel safe. However, we know they cannot stay innocent forever. We do want them to grow up to be strong and be all that they can be. Perhaps that sounds trite but it fits!
We often send our kids to camp or have them participate in family weekend activities at our local organizations. Maybe we even have our kids attend programming at national meetings like Symposium. These instances over the years helps set the stage for them to obtain a bit of independence outside of our households with other kids growing up with bleeding disorders. My Benny is more independent each year after he goes to camp and there is something wonderfully fulfilling in spending a week with his other bleeding disorders peers that he does not get at home.
What so often remains silent though, is our community history and its impact on us. Yes, I’m referring to the hemophilia AIDS tragedy of the 1980’s. I’m also referring to the decades before and how painful and difficult life was prior to today’s common prophylactic treatments. The lives of many adult men were filled with endless days and weeks in the hospital receiving treatment for bleed after bleed. Our inhibitor families have an inkling of that time period, but most of us do not.
It is clearly an touchy topic and echoes in those conversations I have with families over and over again. The root of the matter is how do we best present this history to our children in a thoughtful and meaningful way? Kids ask the toughest, most honest questions. We may struggle to articulate or know how to answer their questions.
Some of the parents I’ve connected with feel strongly that they do not want to have this conversation at all. We are decades beyond the AIDS and HCV tragedy. Prophy treatment today mitigates most bleeding. Why talk about it. It is over, right? It is a new time and a new world, they tell me.
Gently and respectfully, I disagree. Of course it is always a parent’s decision what they choose to introduce to their child, but my challenge to those parents is always a reminder: Just like the uncomfortable topics of sex and drugs, the subject of our tragic history is going to come up at some point. Our kids are going to hear that an entire hemophilia generation was decimated by an infectious disease they acquired unknowingly by taking their factor. Personally, I’d rather be a part of that discussion so I can offer support and guidance as the conversation evolves, and I hope that we can learn from our past in order to prevent another tragedy.
Adult men often tell me there is a clear divide that has existed in the community since the 1990s. On one side are the older guys and their families who survived HIV and Hepatitis C. On the other side are the new families who are uncomfortable with and avoid that time in our community’s history. It is just too scary to think about. I do see that divide sometimes. Not always, but sometimes.
However, I challenge young families that we need to reach over that divide. We, and our children, must hear these stories and recognize that our history is what makes us who we are. I interact regularly with other rare diseases and they almost never have what we have. Our horrible, devastating, unthinkable tragedy gave us one gift that we still have today: a strong, unyielding community.
My personal belief is that we need to know our history in order to be the best parents possible to children with bleeding disorders. Honoring our adult blood brothers and sisters, their families and those that were lost with our willingness to learn is our responsibility if we are to belong to this community. We need to understand and accept that it is our history, too.
How to best have this conversation is a parent’s decision. In our household, we started out small. When Ben was in elementary school we talked in generalities about things he could understand, like the basics of factor and where it comes from. By the time he was 9 and 10-years-old, we had him attend his Individual Health Plan (IHP) and Individual Education Plan (IEP) meeting at school so we could talk about infusing and what to expect with a bleed with him in the room. I always brought universal blood borne precautions used for all cleanup if Ben should have outward bleeding at school, like a messy nose bleed. Before and after Ben attends camp he and I talk about any memorial conversations that may have happened at camp and that it is true, people with hemophilia have gotten sick and passed away.
In middle school we started getting into more detail and, at around age 12, Ben and I sat down and watched the film, “Bad Blood.” We planned it on a Saturday when we had nothing else going on that weekend and through the film, I frequently paused it and we talked about points that had been made. I do strongly suggest watching the film yourself first with a knowledgeable community member who can walk you through it. There were facts presented in the film I had not been aware of prior. Ben had a lot of questions and it took us hours to view the film but giving him the chance to work it all through privately was what worked best for him. I also encouraged him to look through HFA’s Honoring Our Past, Building Our Future bleeding disorders timeline and ask questions.
If I cannot answer a question he has I am honest with him about it. We then call one of our Blood Brothers who can answer Ben’s question. For a great many of our older guys who lived our history, they take the responsibility of educating our kids very seriously. I am humbled and honored I can count on their help to give my child this knowledge and strength.
At HFA, we have a phrase, “Lest We Forget,” which we believe has absolute meaning. I encourage you to review the full Preamble that goes with it’s powerful message .As a mom and as HFA’s President and CEO I take the phrase, “Lest We Forget” very seriously in mind and heart..
Kimberly lives in Wisconsin with her husband, Howard, and boys Ben (14) and Johnny (12).
*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.