I am who I am because of you.
I usually hear that in reference to a partner or spouse, not a child. For the past 22 years, Max has given me more laughter, tears, and lessons than anyone I have ever known. I think many hemophilia parents might feel the same, whether we had kids knowing about hemophilia or not, or whether having kids was a dream for us or because, well, it just kind of happened,
We live within an exceptional community. I know for those of us who live with hemophilia that sounds like a “no brainer.” We are a society that has always looked after one another, whether that’s financially, emotionally, or physically. We raise children who become health care and insurance savvy; they’re also empathetic and compassionate. Every time a parent tells me how much it means to have Max leading campfire or how much their kids love having him as a counselor, I am filled with awe. When we go to national events I am struck by how many people truly care about this young man.
In a time where everyone is feeling the pinch of a failing economy, I am once again feeling pride in the people I have come to call my family of choice. One of our members came up with the idea for “Beards for Bleeders.” In order to participate, you are asked to not shave for six months — not even a trim. Each person is to raise funds for the hemophilia organization of their choice. When Max found out about the fundraiser “Beards for Bleeders,” there was no hesitation in his decision to participate. He chose the Connecticut Hemophilia Society and, to date has raised almost half of his goal. (Shameless plug: you can check out the guy’s progress here or the beards for bleeders Facebook page. Donate today!)
The most recent initiative to come along is the cherry pie challenge. The cherries are to symbolize the sometimes messy world of bleeding disorders. Similar to the ice bucket challenge, we’ve been called upon to either donate $100 to the Hemophilia Federation of America or donate only $10, but get a cherry pie in the face. We then have to nominate others for the challenge.
I decided to wait for the National Hemophilia Foundation’s annual meeting in Washington, DC to complete the challenge. Along with two other parents that had been challenged, and a very special nurse from our community, we set out to accomplish our mission. I soon discovered that purchasing cherry pies in a neighborhood without grocery stores was going to be a challenge of it’s own nature! Finally I came up with a plan…I got two cans of whipped cream, a huge bowl of maraschino cherries and managed to beg some Styrofoam plates from the concierge at the hotel. Our sons graciously consented to do the deed; all that was left was finding someone to record the moment.
On Saturday afternoon of the conference a group of us met on the lawn at the hotel. We built our “pies,” said our names, our reasons for doing it and then we each challenged three other people. The climax of the event was three way too happy sons smooshing red, gooey pies in our faces. Watch the video below:
Max has yet to fulfill the challenge made to him, but I know there are a few people who will be attending our local chapter’s fall event who have also been challenged. Perhaps, once again, we’ll do it as a group effort to support and raise awareness for this amazing community.
I’m certain getting a pie in the face would never have been on my list of mother/son activities, nor would I have considered it something worth doing, if my life hadn’t been touched by hemophilia. I have become an assertive, compassionate, open-minded, empathetic person and am able to ask for help — because of Max. I’m also unafraid to look silly if it helps someone who struggles with the emotional and physical issues of hemophilia. Sometimes struggles are the very thing I need to grow.
When I think about who I am I cannot begin to see myself without my hemophilia family. I am who I am today because of them.
Maryann and her 22 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 providers.