I grew up knowing the word hemophilia, although as a child, I could not have told you what it exactly meant. I knew that some of the boys in my family bled a lot, but nothing about the different severities or types. I knew that my Granddaddy was a bleeder and that he died when my mom was around four years old. As I grew older, I found out that two of my cousins also had hemophilia. But still, I didn’t really know what that meant. It was in the 1980’s and no one talked openly about hemophilia; of course, I was also young and way too busy playing with all my cousins to sit around talk with my aunts and uncles about medical issues. Unfortunately, both cousins passed at young ages due to hemophilia related complications.
By the time I was having kids of my own, I knew enough to inform my OB/GYN that hemophilia ran in my family. I guess since the condition is so rare they didn’t really do or say anything different, especially when each of my ultrasounds for my first two pregnancies revealed that I was having girls. It wasn’t until I was pregnant with my son that plans were put into place. At the time, I didn’t even know if I was a carrier and if I was, what were the changes that my son would even have hemophilia? Well, here I am, blogging for HFA…so you know how that turned out!
I was on the hunt for a specific photo the other day and was feverishly going through a bunch of files and pictures upon pictures. That’s when I came across photos from our family reunion last year. And it was a big reunion — the reunion from the side of the family where the hemophilia began.
Now that we are living in the digital age, a family member had created a family reunion group on Facebook. When I heard about it I became very adamant about attending. I wanted Jackson to meet his blood cousins. I didn’t know how many were still alive or if Jackson was the youngest of the newer generation. There were all kinds of questions in my heart and I yearned for answers. I was able to post about Jackson on the Facebook group and shared my interest in meeting my hemophilia cousins. Finding those pictures reminded me of all the wonderful memories shared at the reunion.
We were able to meet a cousin in his mid-twenties who has hemophilia. We talked about hemophilia, infusing, prophy and lots of issues that have come up during his lifetime. His mom was there too, so I was able to talk caregiver-to-caregiver about the ups and downs that come with raising boys with hemophilia. I heard stories of my great uncles and how life was for them.
Oddly enough, after talking with a lot of my relatives, we realized that all the boys with hemophilia were also colorblind. I can’t express how I felt and how I feel, even today as I write this, how much meeting my extended family means to me. It goes beyond having the same hair or eye color or similar facial features or body types. This is a genetic code that has been passed down through generations bonding Jackson to our family hemophiliacs that came long before him.
Family really is everything – we share so much in that genetic code: what we lack in clotting ability, we make up for in understanding what each faces in living with a bleeding disorder.
Jen lives in Ohio with her husband, Joe, and their three children: Evelyn (19), Nora (12) and Jackson (6).
*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.