Forging a Lasting Friendship

As mothers of children with hemophilia, there comes that point in our lives where we become that parent for the first time. Maybe you have hemophilia yourself, or your brother has it, or you heard stories about your father. But now you’re walking a different path. You’re not a patient, you’re not a sister, and you’re not a daughter—you’re a mother of a child with hemophilia. I was a babe in the woods when my son, Todd, was born.

Compared to today, this was like the dark ages for those facing the problems of hemophilia. The National Hemophilia Foundation was a nearly defunct organization–sorely lacking in resources, sorely lacking in money, and completely unorganized. The Albany chapter was less than two hours from my home, but it had basically dissolved itself. I needed to talk to someone who truly understood where I was coming from without having to explain everything about Todd’s diagnosis, and the only way to make this happen was to go out and create a support system for myself.

I started a support group where we all had something in common—we had children with hemophilia. We met every week and everyone was very willing to share their experiences and support one another. Then as our children got older and our knowledge about hemophilia grew... people started pulling away. Everyone remained friends and still communicated, but they didn’t need to get together as frequently. They were comfortable in their own situation, living with hemophilia.

By that point, I was actively involved with hemophilia on many levels: advocating for change, doing my own research. I wrote letter after letter to the National Hemophilia Foundation and to the Rochester chapter, seeking to begin a chapter here in central New York, or garner subdivision status from Rochester. Although I was not successful in those efforts, I did start a hemophilia camp, Camp High Hopes in New York State. This camp was great for the boys, but I still needed to talk to people who had gone through the same things I had gone through and who understood my situation.

I was working with Marianne, a representative from what is now CSL Behring, on reimbursement issues. She mentioned that another mom she’d recently met, Doreen, was desperate for information and for someone to talk to. Marianne gave Doreen my name.

When we first talked, it was as if we’d known each other for a million years. It was like we were sisters. We could go for days or even weeks without talking to each other, then pick up the phone and begin our conversation right where we left off. At one point, Doreen moved to Boston, so we drove out there and spent time with her and her family. Before long I became godmother to Doreen’s daughter, Taylor. My son, Peter, became godfather to Doreen’s son, Zachary.

To me, Doreen is more than a friend and confidant…she’s family. On some level, she’s more like family l than my own biological family. I was pushing to have my needs met as Doreen was just beginning her journey, but I needed her as much as she needed me. I really needed to be able to share. I think there is a part of everyone who feels that it’s just as important to give as it is to receive—not necessarily tangible things, but giving of yourself. It was very important to me that I could help other parents avoid traveling that lonely path that I had walked. I was more than willing to meet as many Doreens as possible.

To forge lasting relationships within the hemophilia community, you have to be willing to do the work. You have to convince yourself that you can overcome shyness or whatever else might be holding you back. It’s worth it, because the people you connect with aren’t going to ask 4 million questions. You will share a true sense of understanding without speaking a word. Whereas you have to explain everything to your next-door neighbor, there are so many things you won’t have to explain to people in the hemophilia community.

That’s why having Doreen in my world has been a godsend. I have forged other close friendships from within the hemophilia community, and they’ve been godsends as well. I don’t know how I would’ve survived a great many of the things that I have been confronted with in my life if I didn’t have people I could call on at 2 o’clock in the afternoon—or 2 o’clock in the morning. I’ve never had to worry about them asking, “Do you know what time it is?” I have always been able to count on them to reach out with, “What’s wrong? How can I help?”