I’m adopted. My birth mother was a spontaneous carrier and when she put me up for adoption she didn’t know about hemophilia. When I met her about ten years ago I found out that I have five younger siblings. Two of my brothers, Edwin and Steven, had hemophilia and died from HIV contracted in the bad blood era. I have another brother, Kevin, whom I haven’t met, and two sisters, Brenda and Lynda, whom I have met.
Imagine my surprise last year when I got an email with the subject line, ” Your niece.” I guess having nieces or nephews is reasonable since I do have younger brothers and sisters, it just never really clicked. I was contacted because my niece, Tashia, has a 2-year-old with severe hemophilia A, which is what my son, Max, has. She found out about us and wanted to reach out to connect with people who know what she’s going through. Her son and Max have the same treatment center nurse. Our HTC nurse was also the nurse for my two younger brothers (Max’s uncles). Once again the world shrinks a little around me as I realize how small our bleeding disorder community is.
We were excited to meet Tashia, her son, Jaymasin, and her son’s father. Soon after we arrived the first thing Tashia said to Max was, “You look just like my father.” Even though we had seen pictures of Steven in the past, the ones Tashia showed us really exemplified the similarities. I recall when I met my mother thinking how much I looked like her and again we found ourselves meeting more people with the same features that we have. I suppose it must be difficult to imagine what it’s like to suddenly have people that look like you or have the same make up as you when you’ve grown up with your genetic family. For both Max and I it remains a mysterious thing. Seriously, someone with the same genes?! Every now and then he’ll say with wonder and amazement, “I have a cousin. And a second cousin with hemophilia…”
As the years have gone by having a bleeding disorder has sometimes been a curse and other times it has been a gift. I think of how it has shaped our lives and the people we love because of it. Once again we have been given a gift in this storm of chronic illness — one that was unexpected and amazing. Since we met our extended family, they’ve been to some events, and Max and I have also gone to visit them at their home. We have plans to do more things together. We met Tashia’s mom and were able to ask questions about Steven.
It is my wish that Jaymasin will have as many friends and opportunities as Max has had over the years. I know Tashia will be scooped up and loved just the way I have been as a mom in the bleeding disorders community. It’s going to be awesome to watch her little family make those connections just as Max and I have!
Maryann and her 23-year-old son, Max, live in New Hampshire.
*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 provid