Musings of a Marfan Mom

2011 Conference Recap


It’s way past time for my conference recap!

This was a bittersweet conference: many of my good friends and “regular” teens were missing, but I was able to meet a few friends in person whom I’ve been corresponding with online for some time.

Here’s a rundown of some of the conference highlights:

Wednesday: We got to meet up with fellow blogger Katie (aka MendyLady) and her two adorable daughters for a bit. Followed that up with dinner with a small group of friends.

Thursday: One of Mark’s cousins lives in Portland, so we met her for brunch at the quite amazing Mothers’ Bistro. After chatting over Facebook it was great to actually meet in person! Baby J had his echocardiogram that afternoon and I must say, the clinic ran incredibly smoothly this year. That evening was my annual pre-conference dinner party. 20 or so of us went to the Rock Bottom Brewery. I have the best friends and getting to chat with other Marf parents was comforting. I got to meet my friends Erin, Suely, and Debbie B in person. Plus, all the kids were adorable! I should have gotten a picture of them all.

Friday: Baby J and I had clinic appointments. I saw Dr. Sponseller for my spine and was pleased to hear I don’t need surgery for my scoliosis yet…possibly forever! It’s holding steady at about 40 degrees, so I only need The Situation on days I’m having pain. J met with Dr. Lacro to review his echo (stable!). We were also filmed by Kevin Hartmann for the documentary he’s working on (more info on that to come in a future post!). The rest of my morning/afternoon was spent in board meetings. After the welcome event, the teens got to know each other via a speed meeting (like speed dating but without the dating) activity. It was a hit! We also had the annual gender breakout session too.

Saturday: Dr. Lacro did a Q & A with the teens, followed by a variety of workshops. I co-taught one on preparing for college. We took a lunch cruise and danced as we sailed down the river. That evening we had a dance/game night (Mark dealt blackjack for hours, per his usual), but with a twist. Since the teens met their goal of raising $15,000 before conference, teen leader Ben and head of health education Jonathan lost their hair.

Sunday: This year marks the NMF’s 30th anniversary. To celebrate, the teens had a birthday party complete with talent show. I also had the pleasure of moderating a workshop where parents were able to ask a panel of 3 teens any questions they wanted. I am consistently impressed with how articulate and insightful the teens are. Conference concluded with the closing awards luncheon, where another amazing teen and my friend Alix both spoke on the living successfully panel.

Monday: Headed back home, but not before having brunch with Kelli, one of my friends from high school!

Beyond that, I spent every evening in the hotel bar sipping ice water and catching up with my adult friends. Mark passed out way before I did. Also, a huuuuge thank you to my mother-in-law, who came in from Ohio to watch M and Baby J so that Mark and I could work. We wouldn’t have been able to without her help!

For those of you who went, what were your favorite parts of conference?

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  1. My favorite part was seeing my son lighten up, like a weight was lifted off of him.
    Second favorite was all the amazing moms I met and spent time with. We are looking forward to L.A. 2013!


  2. EVERYTHING!!! But the best was watching The Boy walking so tall and being so comfortable in his own skin. It was very empowering for him (even if he has become a Militant Marf)


  3. Great recap! Already can’t wait for Chicago next year!


  4. Very cool!


  5. Sounds wonderful! I can’t wait for the conference to come close enough for us to go again and take the kids. J can meet other kids like him so much younger than I ever had a chance to- hopefully he’ll grow up feeling much less alone.


  6. A couple of months ago, my youngest brother was screened/tested for Marfan. He’s super tall, has really long fingers and toes, he grew so fast that he has stretch marks on his back and he was having dizzy spells. Everything came back clear. The specialist said that if he did have it, it was to such a small degree that it was undetectable and not something to worry about. She said that he just had a rapid growth spurt and wasn’t eating, drinking and sleeping enough to keep up with us growing body.


    marfmom Reply:

    Glad to hear his aorta, etc. are fine! :-) If he’s under 18, he may want to get another echo in a few years just to be sure, as symptoms can be progressive.


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