My daughter, Emma, just started 6th grade - middle school in our district. Like a lot of parents in my town, I watched her get on the bus, looking more grown up than ever, and then stood there for a moment, wondering, “How did THAT happen? Didn’t I just get her to give up her pacifier?”
“I wouldn’t worry too much about the rapid heart beat, but you should look at this.” Those words began our adventures with Marfan syndrome. Our son Micah was five when an insightful pediatric cardiologist at the Alaska Native Medical Center in Anchorage identified an already enlarged aorta and suggested he might have Marfan. We had taken him to see the doctor because his heart would sometimes race for no apparent reason. One fortunate trip to this doctor and soon we were neck-deep in research, more medical appointments, and, luckily, our association with The Marfan Foundation.
When I shared that my victory over Marfan and related disorders was "Finding a MarFriend and a MarFamily when we thought we were alone," I was remembering one of the most amazing gifts this community has given my family: my son Ethan meeting Laura.
Twelve years ago I married my husband Mike. Up until I met him, I had never heard of Marfan syndrome. My husband was diagnosed with Marfan syndrome at the age of 9. I came to understand that he had an issue with his heart that he took medication daily for and had echocardiograms to monitor his condition every six months. He was very tall and he had a pectus deformity which had been operated on when he was a child. Being a private person, I quietly read about the disorder and filed it away in the back of my mind, not wanting to talk about it or face the reality of this condition. Within a year of meeting Mike, he had two pectus surgeries. These were very painful but he fought hard and made a full recovery.
I don’t have the greatest memory, so I am not sure when I attended my first conference. I do remember that it was in St. Louis, and I must have enjoyed it because I kept going back. Then, for a number of years, I didn’t go, mostly because of the surgeries I had to have. Indeed, my slight memory issues are probably due as much from the effects of sedation from those surgeries and the necessities of daily pain medication as they are from age (I’ll be 46 the day after this year’s conference ends).
But I digress.