01 March 2011

"When I have Cystic Fibrosis..."

This Saturday, I attended a local Great Strides meeting here in Waco to gear up for this year's fundraiser.   We had a great time as it was just a few women and myself.  (The Waco walk is pretty small since there are only about a dozen children with CF in Waco and the surrounding community.  We hope to increase the size of the walk over time.)

Amy, the Cystic Fibrosis Foundation representative who heads up our Waco Great Strides Walk, brought us trophies that she had planned to give us last year at the 2010 Great Strides walk (which was cancelled due to rain).  Bennett received the "Youngest with Cystic Fibrosis" trophy.  Oliver, received the "Youngest Walker's Sibling" award (Amy knows how important it is for siblings to be recognized as well).

In addition to the trophies, Amy also gave us one of the handmade bags we would have received last year during our walk.  It was filled with fun trinkets that we can enjoy at this year's walk.  But my favorite thing Amy gave me personally was a copy of the children's book "Mallory's 65 Roses."  It's the first (and only) children's book about Cystic Fibrosis we own.

When I came home from the meeting, Oliver was anxious to read the book.  Honestly, I was anxious to read it too.  He likes one-on-one reading time with Mom.  I appreciated the first real opportunity to tell Oliver the story of Bennett's CF.

Much of the book is written for a child of 5 or 6 years old.  But there were certainly things Oliver gained from reading the book.

Oliver found this page to be most interesting.  Oliver mimicked the little girl in the book when he put his hand over his mouth like the picture.  Mallory, the character's name, wears a mask while she does her nebulizer treatments.

While reading the book, Oliver asked why the little girl was in the hospital and had to take medication.  I explained that she has CF and needs medicine to get better.  After which Oliver announced, "When I have Cystic Fibrosis, I'm gonna take my medicine."

I chuckled and reassured him that he could take medicine too at some point.  It's pretty interesting to watch the beginning stages of big brother coming to better understand his little brother's illness.  This is the first of many conversations yet to come.


  1. We have this book to!! Ayla (3) was sitting beside me and saw your blog and book and said that's about 65brosis (is how she says it)...what a great tool for our kids to have!! So great for Oliver to learn about CF and have his feelings validated...

    1. I love the name "65brosis"! That's a new one I have yet to hear! God Bless your little one!

  2. I need to find this book. I have heard of it, but not ever read it. I think it might be good for my big kids to read too. Thanks for sharing.


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