Musings of a Marfan Mom

This week I’m writing on Mama Kat’s Writers’ Workshop Prompt #2: What did you once lose? Describe your search to find it again.

In my soul, I am a writer. I don’t profess to be excellent or even average, but I’ve always had a deep need to put pen to paper.

I started keeping journals in kindergarten and writing short stories soon after. My passion for the written word was something that others seemed to recognize about me. When I started at a small private school in 4th grade, I was told about a statewide writing competition called Power of the Pen, which was for 7th and 8th grade students. My teachers began to groom me for the time when I would be able to compete. I couldn’t practice with the team but I was given books of past winners’ essays and access to the current prompts so that I could practice on my own. I was thrilled when I was old enough to be an official member!

My school had a track record for producing medal winners, and the expectations for me were high. I was pleased to be a part of a team and have something I excelled at, especially as sports were not an option for me given my health. My first year I did alright but didn’t make it past the regional competition and never medaled. That was ok though; I had a year left.

I felt the pressure was on in 8th grade. I narrowly missed a medal in district competition (top 12 received medals and I placed 13th) and again at regionals (15th). Heartbroken I assumed that my days of Power of the Pen were over, but a few weeks later I received word that I had made it to the State competition! However, because I had performed so “poorly” in the past, my principal and coach decided that my coach would not be accompanying me to the tournament, even though it was being held less than a 5 minute drive from our school. My friend’s mother, another teacher at our school, ended up taking the day off to go with me. When I barely missed a spot in the finals I was disappointed but felt I had still done a good job.

My principal felt otherwise. She instructed that no mention of the competition be made to the rest of the school and that it otherwise not be acknowledged. I didn’t deserve any recognition because I had failed the school by never medaling (no one else on the team did either, or place as high as me). My friend’s mother bought me a beautiful commemorative mug and she, my mom (another teacher at the school) and a few students still found a way to mention it on the school radio station my mom helped run, but I was devastated. I felt I had truly let down my school and that I wasn’t a real writer.

I lost my ability to write after that. Whereas the words used to come easily, I lost all the stories in my head. A creative writing class I tried in high school left me in tears each night as I struggled to come up with pieces to write about and the self-doubt as to my abilities. Except for private journaling and research papers for school, I never wrote again, though I always ached to be able to.

Then, last summer, I was asked to speak at the National Marfan Foundation’s annual conference about my personal journey with Marfan syndrome. I was keeping a family blog at the time, just general life updates and pictures of my newborn son. I decided that I’d write a 4 part series about my story and post it in order to get the juices flowing and figure out what to use in my speech. To my shock, people responded to what I wrote! My brother, who already had a successful blog, encouraged me to revamp my site into a place to write about Marfan and my life as a mom, and Musings of a Marfan Mom was born.

It took about 10 years, but I was able to reclaim the part of me that was able to write. I relish the evenings after Menininho goes to bed, where I can turn on the TV, curl up on my bed with my laptop, and write the next day’s blog post. I’m flattered that anyone takes the time to read what I write, but now I know that even if my readership dwindles to 0 tomorrow I am and will always be a writer, and I won’t lose that knowledge again.