More than Max’s Mom

I am a modern day success story.

I never thought I could have kids. Issues that I now know were caused from my own low factor levels had doctors telling me I “would probably never be able to have children.” I set out to live my life as such. You know those lists of “have you ever?” where you get points for the things you have done? I always score pretty high on those. Here are some examples:

• I have hitchhiked across the country.
• I was married to a tattooist. I got tattoos back when nice girls didn’t get them.
• I hung with bikers for awhile.
• I was part of a van club back when truck-ins were a thing.
• I worked in one a bar where the floors are particleboard so they get squishy from the spilled beer. It was like Vegas — what you did there, stayed there.

You get the idea.
My life changed in my 30’s when I realized I couldn’t live that life forever.
At 33 years old I got pregnant. Nine months later I had Max. And Max has hemophilia.
So here I am at 58 years old, and I have an amazing son who has taught me so many life lessons that I can’t even begin to list them.
Very often when we have kids with extra needs, or even without, we define ourselves as “so and so’s mom.” When asked to define who I am beyond a hemo mom there are many ways to respond. The short answer is this: I am a modern day success story.
But I am also:

• A woman with mild hemophilia
• A phlebotomist
• A daughter
• A friend
• A volunteer
• An executive director

I don’t have any college degrees. I’ve never worked in corporate America. As a single mom I have struggled most of my son’s life to make ends meet. Being the mom of a child with an expensive illness, I have had to educate myself about insurance, genetics, and physical therapy. I have learned to advocate with doctors, employers, and legislators.
With no formal education how did I become the director of a nonprofit? There was a time when everyone was taken for who they are. We as a society took stock of a person and granted them the ability to grow or perform to their highest abilities without pieces of paper or thousands of dollars in college education. I believe the people who have become my family because of bleeding disorders still encourage each other to grow and excel because of who they are. That’s how I became an executive director..
What is it that makes me a success story? Who I am. I have a mildly sarcastic and sometimes caustic sense of humor. I am compassionate. I’m patient at times and equally impatient at other times. I have a strong sense of right and wrong but don’t always abide by those feelings. I love to take pictures. I use bad language. I have questionable taste in clothes. As a phlebotomist I excel. As a mom I struggle with all the issues every parent does, but I love him first and foremost. As a daughter I work hard so mom can be in her home and be safe and happy. As a friend I listen, share, support and empathize. It’s in my nature to always want to learn. It’s not always easy doing things that others have studied for, and I sometimes struggle, but I continue to learn. I am not afraid to make mistakes and ask questions.
I have met so many success stories within the everyday struggles of living with chronic illness. Each of them have encouraged me to be my best. They allow me to fail and they applaud my accomplishments.
I believe that no matter where we came from, together we are all modern day success stories. Sometimes the best schooling you can get is from the lessons life teaches you along the way, and surely having a child with hemophilia has shaped me into who I am beyond just a mom.
Being Max’s mom taught me how to be a better me – how to be a modern day success story.
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 provid