There is something special about the hemophilia community.
I have never experienced anything like it. I have friends that have children that are affected by diabetes, cancer, ADHD, and the autism spectrum, but even though these families are among extremely large support communities there is nothing like the hemophilia community. Even though we may be small in numbers, there is something profoundly amazing about us.
I am your prototypical introverted, only child. My first instinct in a time of crisis or the unknown is to turn into myself, to assess the situation and figure out the next step. I did not have this option when Logan was diagnosed with hemophilia; I had no way of assessing the situation and figuring out what to do next – I was lost in the unknown.
It was here where the hemophilia community became an integral part of my life and my survival. My husband and I were kindly and respectfully contacted by a family that had been in our same situation – in that place of, “Hemophilia — what? How do we cure it? Can he ever ride a bike? “How do we do this at home?” We exchanged lengthy emails that answered questions that only a parent could answer, not the doctors or the nurses. I was given a picture into what Logan’s life might look like: that he could play t-ball, ride a bike, or play the cello if he wanted to. This family is still an important part of our life and we treasure the times we can see them and their boys.
Our local HTC has started a mom’s group, which is a wonderful opportunity for moms to get together and understand one another and the different sort of lives we lead sometimes. It is here that I have met some of the most amazing women – women who I see outside of the scheduled mom’s group get-togethers. I count them as friends and no matter the distance or time that we go from seeing each other it is always met with joy.
I still remember the first time I met Kari, someone who has become a dear friend, at our first get together. We talked briefly and I ran through the story of Logan and his birth, his inhibitor diagnosis, and the multiple surgeries. Then she did something amazing – she hugged me. No questions about what this meant or that meant. She understood and that meant the world to me.
In our mom’s group, we have the opportunity to talk about hemophilia without explaining this and that, or what something means. We can just talk. We can relate to one another. We can share in one another’s joys or sadness. We may not experience the same circumstances relating to hemophilia – inhibitors, port infections, clinical trials, brain bleeds, or constant joint bleeds, but we understand. And there is something profoundly remarkable about that.
I know that many of us are separated by far distances and it is difficult to connect with other families in the hemophilia community. I understand that, but be aware that there are moms and families out there that would love to connect with you, to talk with you, to cry with you, to bring you coffee while you are sitting in the umpteenth hospital room, or be that quick email every once in awhile.
We share so much in common. That is a tie that will bind us forever.
Emily Boyer lives with her husband, Geoff, and 2 year old son, Logan, in Minnesota.
*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.