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CF Book

**This is actually a post that got lost in the “draft’ pages, unfortunately I have several of those.  I write to process feelings and emotions, but sometimes I don’t get back to it to edit and revise (and this MUST be done if anyone is to halfway have a chance of understanding what I write. =))    GetAttachment.aspxA few weeks ago a dear friend of mine sent us this book out of the blue.  HUGE BLESSING!!  Funny thing, last year we looked everywhere trying to find this book, and couldn’t.  Rachel was thrilled!  Mama was too!

Delightful, positive book!  I can only imagine what it would be like to be Rachel or any other kiddo with CF.  To have a lifestyle that required so much of you each and everyday, and yet to not personally know another person in your world that understood (many of you already know that CF people are to no close contact with other cfer’s due to cross contamination.  This week they came out with even more strict guidelines concerning this issue.  “Only one CF person at an indoor event.” Wow!  Crazy disease.)   As much as I, as a mom, am eternally thankful that Rachel is the only one of our kiddos that suffers with CF.  I have heard comforting stories from siblings that share the journey of CF.  They share something bigger than blood.  They share struggles.  They find encouragement from one another as well as a common factor that goes deeper than family, they are fellow warriors.  I read and hear stories of older CF people often that struggle with feeling alone or isolated due to the nature of the disease.  While we don’t fully understand it, we do see the possibility for it in Rachel’s life.

So books like Malory’s 65 Roses are encouraging.  Rachel was so very excited to read this story and has actually asked to read it several times.   She loves seeing the little girl taking her pills and doing her treatment and dreaming of flying! =)  There is a page in the book that makes me choke up each and every time I read it.  It is good for me to be reminded of.


Last Friday I was really angry. I did not want to have CF anymore. My mom gave me a big hug and told me it was okay to be angry.

I often forget that as much as I am constantly trying to process life and cf, Rachel is as well.  Only, she is still little!  She is seven and must deal with thoughts that are so much bigger than her peers or siblings.  She must fight her own will each.and.every.day!  Mom and dad get breaks.  My husband is amazing and does her treatments almost every night and then throughout the weekend.  But Rachel…she NEVER gets a break from this burden.  And, I am sure that his burden is so very heavy.  My prayer is that she learns to walk the road before her well.  That she learns to depend on the Lord’s strength.  Not only in managing CF, but in life.  I pray that she uses her condition to glorify the Lord in all that she does, struggles with and learns about in this life!

Maybe someday her and I will write our own CF book about the triumphs of life??  Just maybe…


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