I have been thinking a lot about my role in my bleeding disorder community as Max becomes an adult. Where is my place as a mom of an adult son with hemophilia? I have been given the gift of having a job that keeps me connected and involved, but what about the other old timers? I have heard “where’s my place?” from families and siblings as the effected kids get older. I have seen my friends get jobs with industry and chapters because, well, it’s our community. I see brothers and sisters simply disappear as they get older. After spending decades developing relationships and being a part of this community, how do we just walk away? But without a role, how do we stay? I guess feel like I’ve aged out and like I have no place any more after twenty-one years of attending my local camp; I feel like my place is disappearing.
As a community, do we focus too much on new families? I hear it all the time, “there were three new families there,” or that “we have to be careful so our new families are comfortable.” All true, but somehow it’s become exclusive. We need to care equally in keeping families involved as we do about engaging new families.
There are so many heroes that have shaped the bleeding disorder community. There are people who died and the people who fought for them. Some of these people are the same ones that showed me how to parent a child with hemophilia. They are the ones that showed my son how to care for his own disorder. It wasn’t a nurse that taught Max to self-infuse when he was six-years old — it was a counselor at camp. It wasn’t a social worker that told me the best lesson is to let him bleed when he was 8-years-old — it was a young man who was getting ready for college. I haven’t seen them in a few years — where are they now?
Recently I watched a video of two young men that have gone to camp together for many years, both adults now but still holding onto the feelings that made them who they are. What’s next for them?
So how do we welcome old-timers? How do we show them what they did for us made all the difference? We, as a community didn’t get to a place where our kids are independent or the treatments become better and safer by magic. People fought for these things.
I may just be feeling nostalgic for a time when we really did look out for ourselves, a time when we didn’t worry as much about the rules as much as we worried about each other. I know it’s not just “us,” it’s the way of the world these days. I also know that a community that can change laws and make the whole country safer has the ability to embrace and honor the people who gave us so much. I only wonder if we will take as much effort to welcome and embrace our teachers as we do the students.
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Maryann and her adult 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 provider.
