I can’t say that I was “aware” of hemophilia before Thomas was born. Since there was no family history, the only thing I could vaguely recall about hemophilia was that Ryan White had it. My knowledge beyond that was slim to none. In the days right after the diagnosis, I didn’t want to look at the mountain of brochures we now had from the HTC. After a few days of crying every time I looked at Thomas, my husband said, “Enough. We’re going to watch one of these videos and learn about this.” That was all it took and I found myself open to learning about hemophilia. Even as I was coming to grips with the diagnosis, I couldn’t stop myself from telling as many people as I could about it.
In those early days, it wasn’t a conscious decision to talk openly about hemophilia to my friends and family and I’m certain I got quite a few of the facts mixed up. During this time, the old NBC “The More You Know…” public service announcement was stuck on a loop in my head. I just thought the more everyone knew, Thomas would be better off.
I didn’t see the bigger picture – I didn’t see that by talking about Thomas, I was raising awareness about hemophilia. Often times we start down a path, led solely by our own needs, but without realizing it we were sprinkling guidance and wisdom to others in similar situations. Over the years, I’ve come to see that the more openly I can share what hemophilia looks like, the more I can help others. I realized that I can help the mom who was like me – scared, completely befuddled by a diagnosis of a chronic condition for her child. I can help others unaffected directly by a bleeding disorder by showing them that strength doesn’t necessarily come from a strong body, but from the will in a little boy who will fight to get well enough in time for a swim meet. By sharing the good and bad of living with a bleeding disorder, I began opening the world’s eyes to what others struggle with and overcome
Hopefully, the Hemophilia Federation of America’s fact a day on social media during the month of March – Hemophilia Awareness Month – has helped to educate and raise awareness not only within our bleeding family, but to the community at large. If you missed a fact, you can find each of them listed HERE. Our next opportunity to raise awareness will be on World Hemophilia Day, April 17th, 2013. Stay tuned on how you can be a part!
More than a fact a day, this month has been for the little boys with bumps on their foreheads before a school picture, and who have bruises all over their shins and elbows. This month has been for the little girls, who grew into women, never having a proper diagnosis all those years, experiencing nosebleeds, awful bruising and trouble with their monthly cycle. This month has been for the unaffected siblings, whose struggles matter and needs are far too often set aside. This month has been for the families who lost a family member due to Hepatitis or HIV/AIDS, your loss was unnecessary and your family member will never be forgotten. This month has been for the blood brothers with joint damage; it certainly is *not* a limp, and you guys have the most swagger of all! This is for all the dads, who put on a brave face and are a source of strength for their families. This month has been for the moms — the fiercest group of women you’ll ever meet — these are the mama bears, protecting their families against unknowledgeable medical professionals and insurance companies while watching their babies like hawks so that they can lead safe lives And this month has been for those who are not directly affected by hemophilia or another bleeding disorder, who we now hope you understand more about bleeding disorders and we welcome your help in helping us teach the world about bleeding disorders!
Sonji Wilkes was born and raised in North Carolina, where during high school, she developed an appreciation for volunteerism and community service. She graduated Magna Cum Laude with a BA in Behavioral Science from the Metropolitan State College of Denver in 2001. Sonji volunteers extensively in the bleeding disorders community and was selected as the 2006 National Hemophilia Foundation’s Volunteer of the Year. Sonji, her husband Nathan, and three children: Nora (11), Thomas (9), and Natalie (7), currently reside 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.