Infusing Love: A Community's Legacy

[glossary_exclude]Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.
This past Monday marked the 26th annual World AIDS Day.  James W. Bunn and Thomas Netter, two public information officers for the Global Programme on AIDS at the World Health Organization, conceived World AIDS Day in 1987. Since then, messages and proclamations that raise awareness and call for action for an AIDS-free generation are released each December 1st.
As I stood at Starbucks on Monday morning, I was pleasantly surprised to see that a portion of the proceeds from my morning coffee was going to help fight AIDS. It made me wonder though…

  • How much would I hear and see about World AIDS Day the rest of the day?
  • Would it be recognized at the hospital where my son was being seen for a clinic appointment?
  • Would there be others wearing red in honor of the day?
  • Would my Facebook news feed be lit up with posts?
  • Would anyone other than my bleeding disorders friends and national advocacy organizations mention HIV/AIDS?

I was pretty cynical and assumed no. I was feeling pretty irritated when it struck me that I needed to look closer to home and acknowledge that, even within our own family, we weren’t regularly talking about HIV/AIDS and its place in bleeding disorders community history.

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Community members in Washington, DC in the mid-1990s

We don’t have a family history of hemophilia, so I didn’t have a grandfather, uncle or cousin affected by the contaminated blood crisis of the 1980’s. I have no personal stories of losing a family member to HIV, so it’s a tough conversation to bring up with your school age child with hemophilia. For years, I just skirted the issue with Thomas, my 11 year old. I knew that one day I’d tell him of an entire lost generation of his blood brothers and sisters, but I just didn’t know how to talk to him about it. While donor blood and blood products are much, much safer today, I didn’t want to scare or worry him about using his factor product; I wanted to ensure he knew that, but also understand the importance of remaining vigilant. Buying myself time until I was ready, I read books about that time in our community’s history and tried to gain a better understanding so that when I was ready to have the initial discussion with Thomas, I’d be prepared.
When Bad Blood came out in 2010, my husband and I watched it. The gamut of emotions I felt was overwhelming. I still wasn’t ready to explain to Thomas or let him watch the movie, but Nathan and I felt strongly that the wider community should know the bleeding disorders history with HIV/AIDS, so we hosted a screening of the documentary. Many of our local, non-hemophilia, friends attended and one even said, “It taught me a lot about the history of hemophilia and gave a whole new perspective to the tainted blood supply’s affect on its consumers.”
In 2013, as HFA began preparations for celebrating 20 years as a voice in assisting and advocating for the bleeding disorders community, a Blood Brother approached HFA staff about creating an historical archive. His point was that the survivors of the 1980’s are aging and newer families, like mine, wouldn’t understand the chronicle of our community unless it was documented somewhere. As an HFA staff member, I volunteered to work on the project: more importantly, as a hemo mom, I needed to be a part of the project.
I needed to read the materials, books, news articles, and documents that taught me why this community is resilient. I listened to the stories from men who found out their HIV status while in their preteens and I heard the loss of the daughters who lost their dads and the anxiety they faced when having sons of their own with hemophilia. I tried to put myself in the shoes of the mothers who stood on the Capitol stairs in Washington, DC to fight for the Ricky Ray Hemophilia Relief Act. I’ll never truly know what any of my hemophilia forefathers and foremothers went through, but I have a much deeper appreciation of the legacy of advocacy and awareness the bleeding disorders community has. I realized that that legacy is the story I should share with Thomas.

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                     Hemophilia community members rallying for Ricky Ray support in the 1990s

So on World Hemophilia Day (April 17), Nathan and I talked to our three children about the history of hemophilia. We gave them very broad overviews of what life with hemophilia was like since the 1940’s until today. We talked about the advent of factor concentrate as we know it and that the way factor had been made in the early days wasn’t as safe as it is today. We talked about learning from mistakes and that as a patient you must speak up when something isn’t right. We talked about the discrimination that Ryan White, Ricky Ray, and thousands of others faced. I had a lump in my throat for the entire conversation. I realized that Jeannie White-Ginder and Louise Ray never got the chance to decide when and how to have a conversation about HIV with their sons and that their sacrifices had given me that opportunity to infuse safe factor into Thomas so he could lead a life that their boys had deserved too. But the conversation focused on being the best possible advocate you can be – standing up for what it right, what is safe, what is in the best interest of you, the patient.
Although I had felt good about the conversation, as it came to a close, I told Thomas, “I don’t want you to worry about using factor. I don’t want you to worry about catching AIDS or anything from your factor. That’s why Daddy and I spend so much time working and volunteering – we want to help make it better for everyone.” He was quiet for a minute and then said, “I have to use my factor. I’m glad all those people before you fought to make it better.”

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Crowds gathering in support of the Ricky Ray Relief Fund Act

On Monday, my Facebook news feed was lit with hashtags of World AIDS Day from within our bleeding disorders community and that’s good, but I didn’t see many others wearing red and the hospital where Thomas was getting treatment didn’t have anything noticeable going on. I realized that we still have a lot of work to do to remember and honor our community’s history with HIV/AIDS. I recognized that I have a lot of work to do at home to remind my family of that legacy. While World AIDS Day focuses on working toward an AIDS-free generation and that’s a worthy goal, I now see the day as a catalyst to remind everyone that advocacy in action is the best prevention effort. I will honor each December 1st by reminding my friends and family of this community’s deep connection to HIV/AIDS.
*To learn about bleeding disorders history, click here to view HFA’s “Honoring Our Past, Building Our Future: A Historical Journey of Bleeding Disorders” interactive timeline 
Sonji lives with her husband, Nathan, and three children Nora (12), Thomas, (11), & Natalie (8) in Colorado.
*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.[/glossary_exclude]

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