Musings of a Marfan Mom

Phoenix Rising


This week I’m responding to Mama Kat’s Writer’s Workshop prompt #2: What book captured your heart? Write about why the first book you loved is the first book you loved.

I happened upon Phoenix Rising in my mother’s classroom (yes, she was my teacher) when I was going through the worst of my 8th grade angst. In the book, Nyle is a young teenager living with her grandmother on a Vermont sheep farm. A nuclear accident has just happened and that portion of the country is living in fear that the radiation will come to them. Survivors from the accident site are shunned with the thought that their radiation is contagious. Nyle’s grandmother takes in 2 survivors though (a mother and son), and Nyle has to deal with her feelings about this and how her friendship with the son might affect her friendship with her disabled friend.

It was like Karen Hesse had written the book for me! I was going through a period where my classmates treated me differently for having Marfan syndrome. I’d been called a mutant. I’d been taunted, told to get lost. Kids complained if I had to be on their team in gym. I came home from school crying, bitter, and angry. Just ask my mom.

Somehow, Phoenix Rising made it more ok. Nyle, Ezra, and Muncie knew what it was like to be a mutant. They knew the frustration of trying to fit in somewhere where others insisted they didn’t belong and the fear of not knowing what the future would hold. And yet, they thrived.

And then I knew that I could thrive, too.

Yep, I know it's just a mirror-image picture. That's my Mac camera, for you!

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  1. Hi – visiting from Mama Kat’s. Your mini review made me want to read that book. Thank you for explaining your syndrome as well. I hadn’t heard about it. I’m so glad you’ve been blessed with a husband and baby. :o) I was teased a lot growing up too (without having any syndrome) so I’m particularly touched that you are able to now live such an excellent taunt-free life.


  2. Visiting from Mama Kat’s.
    It’s great that you found a book to make you feel better! At that age anything that makes you feel better is great!


  3. Finding a book that speaks to you is always so encouraging. I’ve loved reading since I was pretty young and it all started when my 4th grade teacher read The Lion, The Witch, and The Wardrobe aloud to my class. That was my best year of school because of that book!


  4. Finding a great book that you connect with is such an amazing thing. I have had that experience several times in my life, although most of the books I read are scary books so it doesn’t happen often….I’m kind of a huge fan of Stephen King!


  5. Hi marfmom,

    That was an inspirational post. Thanks for sharing.

    Visiting from Mama Kat’s.


  6. You know, that is what I LOVE about books. The way the have the power to make us feel like we can change and overcome obstacles. They give us hope. Hope is a priceless thing indeed.


  7. What a great story, thanks for sharing! The power of good books never ceases to amaze me.


  8. There is something about a good book that can get you through rough times. I wonder why that is so…


  9. I found you from Twitter and you are a SITSa!! WOOT. Books are amazing the way they resonate with our lives and I will tell you this…you are beautiful and your smile is infectious for this post…just shows a small glimpse of who you are. 😉 Thanks for sharing the book too.


  10. You make me want to read Phoenix Rising! It sounds very cool!


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