Musings of a Marfan Mom

April 8, 2010
by marfmom
10 Comments

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!

April 6, 2010
by marfmom
3 Comments

Easter Fun

Did everyone who celebrated have a nice Easter? We had a relaxing one for sure!

We spent the morning listening to a church conference, then I insisted we take Menininho outside for a little Easter egg hunt. He’s 14 months old, likes to put his Noah’s ark toys in the ark, then dump them out again…shouldn’t have been TOO hard to get him to put the eggs in a bag, right?

Wrong.

The Easter egg hunt basically consisted of Menininho ignoring a whole bunch of eggs in plain view.

The Easter basket was a bigger hit though. I’d filled it with pink “grass,” 2 bottles of bubbles, and a stuffed rabbit. Menininho tossed the bottles aside, bit the rabbit in the nose (hard!), and then went straight for – you guessed it! – the grass.

Oh well…he might not have cared, but at least it provided me with a lot of cute pictures!