Not related by blood. Family because of it. I had a button made with this quote when Max participated in the Beards for Bleeders fund-raiser two years ago.
Something I have gained from the bleeding disorder community is an oddly mismatched, but amazing group of BFFs. My gang, as I like to call them. What we have in common is not social status, income, age, or gender. It’s not that our children connected and we became friends because of it. It’s not sports, religion, politics, where we live, or marital status. We don’t always agree on things or share the same views and we allow each other that. We’ve never had a fight where one doesn’t talk to another.
The only commonality we have is hemophilia.
I don’t how or when it happened. There aren’t moments with each individual that I can look back on as “the moment” we connected.
I have my BFF from childhood, the one I got into trouble with as a teen and then we stood up for each other in our weddings. I have the adult BFF that I met in my thirties that is my confidant and traveling buddy. And I have my gang. My gang understands what it’s like to live with a chronic illness, but that’s just part of what makes us who we are as a group
This is what I do know: When I was in the hospital with a brain bleed, they were the first people I reached out to. When I was struggling with some issues that I thought I might never get through they were the ones that held me and let me cry. They are the ones that tell me they have faith in me when I don’t have it in myself. They include me in outings even with my tendency to wander off. They are the first people I look for when I get to events, whether it’s in New England or across the country.
We have rode through the Rockies in a Jeep, experienced an airboat in the bayous of Louisiana, flown together on planes, rode bikes, sat in meetings and gone to tourist attractions. We have laughed ‘til we cried, and cried ‘til we laughed. We’ve shared each other’s grief and accomplishments. We’ve watched our kids succeed and fail, learn to treat, learn to mentor, and learn to hug the grownups even when they don’t want to.
I can guarantee we would never had met if not for hemophilia. Our differences are our strength. I miss them if too much time goes by. This is a gift of the disorder. One of the best. I am a very fortunate person.
Not related by blood. Family because of it.
Maryann and her 23-year-old 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.