Musings of a Marfan Mom

My Life With Marfan, Part 2

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Nothing happened for a while. Months and months went by, and my doctor didn’t answer my letter. Finally, towards the end of 7th grade, nearly a year after I mailed it, I received a response. A hospital social worker had been forwarded my letter and was letting me know of a Marfan support group in the area. The group included a 13-year-old girl! However, even though I had waited so long for a response, I didn’t jump on it right away.

Now, I didn’t usually participate in PE class. I was at a small private school, preschool thru 8th grade, and my teachers allowed me to work with the kindergartners during my phys ed time. [For awhile they had tried to make me teach myself yoga using a video in an empty classroom, but I axed that idea once one of my male classmates accidentally walked in on me with my legs over my head and my bum facing him. That was pretty mortifying for a middle schooler!]

Anyway, in 7th grade we got a new teacher, and he took it upon himself to try to get me more involved in gym. This particular day, he told me he’d re-worked the rules of kickball so that I could participate. I don’t remember much of the game, but it ended with my team blaming their loss on my lack of athletic prowess and me being scorned off the field. That was the moment I decided I’d had enough, and that evening I called the mother of the girl my age to learn more about the support group.

Luckily for me, they were having a meeting a few weeks later, in early June. I was excited to go, but my father was upset about it. I didn’t understand it then, but he was remembering other types of support groups that he’d been to and the negativity that could occur. He didn’t want me to be frightened. The Sunday of the support group meeting, my mom took my siblings and me to church. My dad was supposed to pick me up early so I could make the meeting on time, but Mom had warned me that he might not show up. I sat in the lobby and prayed and prayed that he would come. I needed to go to this meeting and for the first time meet people like me. Luckily, Dad came through.

When we got there, he stopped me in the parking lot. “Maya,” he said, “I want to warn you. Some of the people here, they might be pretty deformed. They might be really sick. Do you think you can handle it?” I replied, “I am one of these people, Dad.”

By the end of that meeting, I was so grateful to Mom for suggesting I send that letter to my cardiologist.  S. was the girl my age. She and I left the adults at the meeting and went to talk. It was like we’d known each other our entire lives! I had never felt such an immediate connection with a person like that before, or since. We both loved dancing and pushing the limits that our doctors set. We were active in our church youth groups. S.’s health was worse than mine, but she kept such a good attitude. At the end of 3 hours our parents had to drag us away from each other. For over a month, we emailed each other nearly every day, and made plans to spend the day at the pool together.

At the end of July I asked Mom permission to invite S. to the pool for the following week. Mom said no, that it wasn’t a good time for me to call. She was distracted all day long. In fact, coming home from a church activity that night we almost got into a car accident because of it. After family prayers my siblings were sent to bed and I was told to stay behind. “Am I in trouble?” I asked. “Maya,” Dad said, “S. died last night.” I didn’t believe him at first. Anyone who knew Dad knows he had an offbeat sense of humor. I thought it was the start to a sick joke. Then all I could think about was that in my last emails to her I had complained about my new scoliosis diagnosis and the silverfish I’d found in my bed and how her last thoughts of me must have been that I was dumb. Mom said, “don’t worry Maya. Just because S. died doesn’t mean you’re going to die too.” My pediatrician had told her to say that. I knew I wasn’t about to die. I knew her Marfan was worse than mine. As I sobbed away the entire night, all I could think about was that it wasn’t fair that someone so knowledgeable and optimistic, someone who was doing everything to take care of herself, should die.

And then I decided I had better do something about it.


This picture of our local Marfan group was taken a little over a year after S. died. It almost doubled in size over that year.

The rest of the story: Part 1, Part 3, and Part 4

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  1. Maya, I'm really enjoying hearing your story. I think you should also do a "Marfan 101" post. I've done a little research on my own, but I'd be interested to hear your thoughts.

    I think it's funny how I can see your personality in how you dealt with the situations you were in.

    Also, I have scoliosis, too. Have we talked about that? I think maybe we have, now that I'm typing this.

    Anyway, thanks for sharing…I'm looking forward to the next installment! :)

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