Musings of a Marfan Mom

A Thank You


I thought I’d start my conference recap at the end of the weekend, and with a thank you.

The last part of conference is a luncheon where several volunteer awards are given out (some are done the day before), a panel of four speaks about living successfully with Marfan/related disorders, and the conference photographers present their slideshows of the weekend. I was only half-listening when Carolyn Levering, the National Marfan Foundation’s CEO and luncheon’s MC, explained that the Heart of the Matter award would be given out now because the recipient wasn’t at the larger awards ceremony on Saturday. I was completely floored as I looked at my mom next to me and realized that Carolyn was describing me. What touched me the most is that when I stood to accept the award, the teens and their parents gave me a standing ovation. I started to cry.

So, when I got up to the stage and Carolyn asked me if I wanted to say anything, I shook my head no. I was so shocked I couldn’t think of anything to say and I was afraid I’d just stand up at the podium and cry. Of course, a few minutes later I thought of all kinds of things that I’d want to say and Mom pointed out that it was pretty rude to not say anything at all, which made me feel bad.

Therefore, I thought I’d print what I should have said here.

I want to thank all the parents who not only trust Ben and I with your teens at conference, which I know can be especially hard their first year, but then encourage them to stay involved year-round and keep bringing them back. Getting to work with them is the best job I’ve ever had. They are some of the most capable people I know and I’m honored that they let me into their world. The teens are doing, and will continue to do, amazing things for this organization. I’m also grateful to those adults who inspired and encouraged me as a teen to find my place in the Marfan community, and to Mark, who knew that when he married me he was not only marrying into my biological family, but my Marfamily as well. I’m so grateful for his support. Thank you.

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  1. Maya~I was thrilled to hear you had won the “Heart of the Matter” award! You are so deserving and our Marf community is so fortunate to have your help, enthusiasm and support! :) I’m just sad that I missed joining in the standing ovation for you!


  2. Hey Chica
    The “Heart of the Matter” could not have gone to a more deserving person. You inspire not only the teens (who absolutely adore you) but touch the lives of so many adults and families in our extended Marfamily via NMFConnect, your blog etc. And even with your busy schedule you always have time for a one on one chat or phone call….

    Ditto to what Kari said “We’re just sad that we missed joining in the standing ovation for you” .

    BTW…I can picture you crying and speechless…believe me, no one thinks it’s rude…just heartfelt (and so “YOU”) lol—well maybe not the speechless part but you know what I mean.
    <3 you


    marfmom Reply:

    lol I think it probably was one of the only times in my life I’ve not had anything to say!


  3. I am so sorry we missed it. I cannot think of a more deserving person. You have know idea what you mean to Kari and the rest of my family. If the feelings we have for you are anything like the rest of the teen families—-You have got to be one of the most loved and trusted people in the world.


  4. What a wonderful person you are! Katie loved meeting you and all the teens in Houston! We were welcomed so sincerely and lovingly it made me cry! We are excited to become involved AND to get to Portland next year! Thank you for all you do – you’re an inspiration!


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