Facing the Music

It was 2002 when I married Harry, my high school sweetheart. Even then, I never discussed my dad with him because I had to keep my promise. I promised my dad who passed away when I was only 16 to never talk about hemophilia, AIDS, none of it. Harry put the pieces together though, and when we wanted to get pregnant, I told him there was a chance I could carry the gene and our baby could have hemophilia. Harry was familiar with hemophilia because his nephew had it, and he said he was in it for the long haul. Oh my! How I adore this man!
Three days after my son, Omar, was born, a blood test confirmed that he did indeed have severe hemophilia A. I was devastated. I was terrified. How would I infuse him? How big of a bubble would he be in? Will my husband end up hating me? I had already lost my dad-would I lose my son, too? This was my fault.
By the time Omar was two, he had a couple of bad bleeds. Once, he split his lip. There was so much blood. We raced him to the hospital, and they gave him factor VIII; at the time, I thought that there just one brand and one choice to treat hemophilia. I had no idea there were other choices. I wasn’t informed; even though I had a child with hemophilia, I knew very little about bleeding disorders because I still wouldn’t talk about it. My family still wouldn’t talk about it. At that moment, I felt very lost and alone.
Crazy thoughts raced through my mind. I needed to embrace what I knew about the bleeding disorder but decided to scare myself by learning more.
To be quite honest I was very nervous and scared as I went to the hemophilia treatment center. At the first visit when my son was a few weeks old, they explained the medicines, the needles, and pretty much everything you needed to know. We visit the center once a year for an annual checkup and throughout the year if there are any major bleeds or accidents.
A few months later, my husband and I decided to move to Florida. When we were in New Jersey, we were within the shadow of my dad’s secret. We felt surrounded by confusion and negativity, but most of all, silence. We were ready to raise our son the way we wanted to raise him-without drama, questions, or criticism. We wanted to break the silence.
In Florida, we started with clean slate-new home, new doctors, new schools and new community. There, the local chapters and volunteers changed my entire perspective. Until then, all I knew was death, secrets, and the ugly stuff. Getting involved by going to walks and events and meeting people like me made realize that I wasn’t alone. That’s why I’m here today, because I want to do for others what they did for me. And that was to give me hope.
My son has severe hemophilia. My little champion is now 14 years old. He has helped change my view of the world and myself. He has made me a much better individual, mother, wife, twin sister, daughter, aunt, co-worker, citizen, teacher, and friend.
Mily lives in New Jersey with her husband, Harry, and her son, Omar.
*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.