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CF Community

Great strength+Shared sorrow

That is the best way that I can describe the group of people that are part of this amazing community of people that we affectionately refer to as, CF warriors.

Many people often wonder how we handle the stresses of CF.  Well, first and foremost it is by God’s grace and strength!!  He is faithful and good.  Despite the trials, and difficulties, He is loving and kind in so many seen and unseen ways.

One of the other ways that we learned early on in this journey to deal was to connect to people that understood “some” of our struggle.  Consequently, just because someone has or knows about CF doesn’t mean they “know” your path.  Over the last eight years there has been the swath of people that have had few complications from CF and are 35 years old, and the mama who is trying like mad to keep there 3 year old ‘s lungs healthy enough to stay out of the hospital.  Such a wild disease that has such variations.  It is an odd realization to then think of your child and wonder where they fall on that bell curve.  It is the kind of thing that keeps you up at night reading medical journals or connecting with older CF people to find out what they did that has keep them here on this earth.  Sometimes it is the thing that keeps us pushing when we are just so exhausted that we feel like we can not take another step forward…but we must!

Sometimes people ask how much CF affects our lives.   That’s a tricky question.  It’s daily.  Sometimes hourly.  And yet, we try to let it effect us as little as possible.  However, nights like tonight…my mind just whirls (it is 3 am and have not been able to sleep).  Praying, wondering and praying some more.  Good time to reflect and get the thoughts out of my mind and into print, even if only to help me process.

Want to note just a few of the CF interactions whether in person or through media connections recently:

-a spunky teenager that needs to have a constant flow of oxygen to make it through the day
-mama holding her baby girl as she cries from the exhaustion of coughing and being sick
-a mama spending the day with her son unexpectedly at the hospital getting X-rays and tests run-
a sweet 6 year old girl who recently died from CF
-an adult CFer spending several hours a week getting vitamin infusions
–surgeries for sinus
-the struggles of the adults who now contend with diabetes on top of everything else
-a friend who has CF that tries hard to take care of herself so she will be around for many years for her daughter
-wondering about a sweet friend who transplanted on Christmas and start to worry when you don’t hear from her
-a husband wife that desperately wants to get pregnant, but CF has been a huge barrier
-a mama trying to keep her composure as she answers her 5 year olds question, “Will I die from CF?
-gi issues, our little people suffering from digestive issues
-bronchoscopy (procedures to evaluate lungs)
-clear, unchanged lung X-ray =) from a little boy that has been on Kalydeco for two years  now gives a shimmer of hope that someday we will be blessed with a medication that will be life changing
-a 28 year old that rides his bike 10 miles a day, because he has to…he can breath easier when he does
-a CF child who was totally healthy until she was eight and then things went down hill fast
-a young girl transplanted over a month ago still fighting like crazy
-a mama that tells you she still worries over her grown son that is thousands of miles away, so the worry never goes away
-wondering if friends that you have made over the years are still alive
-a sweet friend whose family totally rocked a CF fundraiser in her words “for our kids”
-trying to figure out what OUR family can do to raise money and awareness to kick this disease.
**Your own sweet girl holding and pointing to a place on her chest and saying that it hurt to take a deep breath
.that’s what has me up tonight. =(  The mystery of this dreaded diseasethe unknown, and the unseen!

Anyway, these are just a few of the conversations/interactions that I have had this week concerning CF.  It is such a HARD community to be a part of, and yet, these are the people who speak our “language” about treatments and med’s and health.  I can not tell you the times that I have been encouraged by someone in this community that relates to our struggle.  There is a tie that binds us strongly.  So while we mourn, struggle and trudge together…we also rejoice together.

Someday soon we will have a cure.  Thanks for taking a moment to read.  We are encouraged when others try to understand, relate and encourage us in our fight.  God is walking this path with us…and for that, there is no greater joy!



One Response

  1. Your blog is an amazing sentiment of all of the feelings that someone dealing with CF (in one way or another) goes through. I’d like to also let you know that your blog has been chosen as one of the Top 35 CF Blogs.

    Here is the link –

    Congratulations and keep up the awesome work with your compassion and your advice to others.


    PS: Here’s a badge to show your readers that you’ve won. Many of the winners have
    already added the badge to their footer or sidebar.

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