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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

Every day we advocate for our children and ourselves. Our advocacy ranges on a small scale such as requesting a drink refill when we need one at restaurant to advocating for our children on a larger scale when requesting a doctor to infuse your child before any sort of x-ray when in an emergency room. We advocate in every area of our lives without even noticing we are doing it.

In our community we have been blessed with some amazing advocates. I didn’t realize how remarkable our advocates were until one day while walking home from the bus stop with my neighbor Jess, we were talking about an upcoming project that her son, Matt, had to do. He had to identify and research someone in history that “Took a Stand.” The very first person that came to my mind was Ryan White. I turned to Jess and suggested he research Ryan White.She wasn’t exactly sure who Ryan White was. She thought she remembered him but, wasn’t completely positive. When I explained that Ryan was kicked out of school and he fought to be allowed to return to school, she remembered the story. Ryan was just 13 years-old when he was kicked out of school for being HIV positive. Matt is 13 years old. Jess didn’t know that Ryan had hemophilia. She knows that my son Nicholas has hemophilia and has a good understanding of it. She thought that would be a great topic and said she would talk to Matt about it. I offered to help Matt work on the research.

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Matt was interested in researching Ryan White for his history project. He was amazed that even while sick, Ryan continued to fight to go back to school. He didn’t think most kids today would fight to stay in school. That’s when it hit me: Ryan fought. He fought long and hard to stay in school. Ryan’s family fought. Ryan was eventually granted the right to return to school but, wasn’t actually able to graduate because HIV took him just weeks before he was supposed to finish high school.

I thought about all of the people in the community we have lost due to the HIV/AIDS epidemic. I thought about the heartache and grief that their families have. Then I thought about how their family members continued to advocate securing a safe blood supply for my son today. Moms, dads, sisters, brothers, aunts, uncles, and grandparents fought. They continued to advocate through their grief, and for some, even in the sickest of their days. I am so thankful that in our community we have such amazing advocates.

I realized that just by taking the time to work with Matt and help him do some research, I am passing knowledge to others about the bleeding disorder community. I am advocating! While it feels like a small piece, those small pieces can add up to amazing advocacy in action. And isn’t advovacy exactly what our bleeding disorders community is all about?

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Carrie lives with her husband Mark, and 6-year-old son, Nicholas, and 2-year-old daughter, Aleesia, in Maryland.

*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.

 

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