Mama Kat’s prompt: “The ache for home lives in all of us, the safe place where we can go as we are and not be questioned” ~ Maya Angelou

I have a few different homes. I have the home I live in with my husband and our son and cat. I have my extended family home. The group of girls I grew up with. The congregation I attended from age 11 until I got married at 22. A group of my Alpha Phi Omega (co-ed) fraternity brothers.

The home I’m going to write about, however, is the one I ached for before I even knew it existed: my Marfan home, otherwise known as conference.

All teenagers, on some level, want to be accepted. It’s a time that we simultaneously scream, “I am my own person!” and “Love me, I’m one of you!” So, being a teenager is difficult enough without adding in a chronic illness that affects both your appearance and physical abilities. As I entered into those tumultuous years, I yearned for the company of other people like me.

While some may disagree with me, I don’t believe that an “unaffected” parent or friend, no matter how attentive they are, can really, truly understand life with Marfan. I had great friends and my parents tried to help me sort out this new, different life, but it wasn’t enough.

Attending conference was life changing because for the first time in my life I was completely and utterly accepted. In some ways it was more Home to me than anywhere else I’ve been. That feeling got me through a lot of hard times.

We were pretty hot back then!

Now that I’m one of the people in charge of the teen program at conference, that feeling of home is first and foremost in my mind. I want each and every teen to know that they are that they are amongst family and that they are safe. They are Home.

This is one subject where I don’t think words can adequately describe the emotions associated. My Marfamily is almost sacred to me. So, I’m reposting this video I made of conference. Enjoy.

Conference video

And to any of my readers who have Marfan or are parents of a child/teen with Marfan: Come. If you’ve ever felt that ache for the “safe place where we can go as we are and not be questioned,” come. You’ll find the home you maybe didn’t quite realize you were missing.



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10 responses to “Home

  1. There’s something about feeling like you belong, especially during those rough teenage years. I admire the work you do to educate others about Marfan. The video was great. What a wonderful “picture” of Marfan life as a teen at Conference. They’re obviously in their element, at home. Thanks so much for sharing.

    Kristi, Live and Love…Out Loud

  2. Wow, that was very enlightening! I am glad you found that home.

  3. Oh Maya, I have tried to explain this sense of “home” that Wyatt , as a young child with MFS and I as a unaffected parent , both felt at the Stanford conferance. It does not just apply to teens, but I can unerstand how it applies especially to them 🙂
    Thank you for expressing it so well. I have talked to others that also can’t seem to find the words to explain it. It is life changing, this quote comes as close as I have seen.
    Again, thanks so much for everything you do!

    • You are so right! I totally neglected that it’s “home” for parents too. “Unaffected” parents have their own experience which only another “unaffected” parent can get. Thanks for adding that to the discussion!!!

      [And seriously, I hate the word unaffected. The parents of siblings might not have Marfan themselves, but you’re still affected by it.]

  4. Kari Dostalik

    Well said, Maya! My entire family – unaffected son, affected daughter, husband & me – look at conference as a second home. Even though Haley is just 10 years old, she’s already formed some lifelong friendships. My son has learned so much about Marfan syndrome and what his sister is going through, and he cannot wait to join the teens this year! My husband and I have also formed some lifelong friendships. There is something about gathering everyone with some sort of affiliation to Marfan syndrome in one place…we’re just one big, supportive family!

  5. What an awesome story!!!!!!!

  6. Wow, what an awesome post. I’ve never heard of Marfan before…thanks for educating me today!

  7. That sounds like a great program you’re a part of. I did something like that when I was a teenager. It was called Impact Teen Training. It was an awesome experience for me.

  8. Jen

    What a touching post. I often think about feeling at home. Last week, my family and I went to a restaurant in Ogunquit, Maine. The main dining room reminded me of my great grandmother’s house. I told my husband that I just wanted to stay in that room all day! He said, “You’re weird”. I feel uncomfortable a lot, so when I do feel comfortable I want to keep that feeling.

    The last couple of years I have really wanted to attend a conference. My daughter and I have Marfan. I was planning on going to the conference in Boston, since I only live 30 miles away, but it turned out I had to have surgery that week. Maybe another time.

    I really enjoy your blog, Maya.

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