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One of the things that I love about the CF community is the insight and help that I constantly get from others in the community.  There are many whom I consider “friends” that I have never met.  I do not know how the  cfers did it before the days of internet??  Since we now know there is an issue with cross contamination if (non-related) CFers are close to one another.  (Although odd as it is, there actually used to be CF camps in the 80’s and early 90’s where kids used to get to participate in summer camps together.  They figured out though that kids would go with one or two bacterias and come home with different strains, or additional bacterias than they went with.  So, they discontinued those and shored up cross infections policies.) Sorry for the bunny trail.  Anyway, I love the older CFers, they have a wisdom that is far beyond their years.  Also the mama’s that understand the battle that we are in for our kiddos lives.  There is something so very comforting about it.

This week, I was trying to encourage one of my older cf friends who is sick and in the hospital.  She is an amazing person.  One who does not complain and who loves Jesus in and through the trials and difficulties of CF.  She amazes me.   As I have said so often, the wealth of knowledge that the older CFers share with us mama’s of youngen’ is so amazing.  It is encouraging, uplifting, sometimes hard, but almost always useful.  Many of us mama’s watch and learn from the “older” community.  We are watching to see how to navigate this road ahead of us although fully knowing that each life and trail is and can be very different.  We understand that we will make mistakes, and that we will not every truly understand “their/child’s” side of things.  Just as they will never understand “our/parent” side of things.  A parents job is to protect, and at the same time refrain from keeping them in a bubble.  A child’s job is to push against those boundaries and desire to make their own way.  However, a mama’s heart never stops hoping and striving for a better life for any of our kiddos.

Back to my sweet friend.  While I was trying to encourage her, she lovingly brought reality and a personalization to the conversation.  She reminded me that as Rachel gets older, this disease will be her’s to bear.  I was not ready for her words, but was blessed by them.  She started with “Rachel some day will keep thoughts inside in order to protect you, her Daddy, siblings and best friends. Quite possibly you will hear this or a version of this,” Mom I just didn’t want you to worry.” The rules will reverse themselves; when once you protected Rachel ( you will always want to with all your kids I imagine) , she will protect you. And that’s, actually a reverse compliment. To me it shows how well you have raised your kiddos.; not to hide the truth or not say anything at all but it shows she grew up feeling safe and protected and respected.”  Somehow those words brought instant tears to my eyes.  The personalizing of the future that is ahead- is tough.  There is a reason the Bible talks about today having enough worries…and not to worry about tomorrow.  It is a good place to be, and a burden heavy enough.   It is where I work to reside most times, dealing with today and not thinking about tomorrow.  However, my friends words took me to that future, and it was tough to think about Rachel being sick and not wanting to worry us.

The strange thing is that I actually already see some of her words being truth at times.  When Rachel is really sick, she does not complain.  (If she has a hang nail, watch out she is going to scream bloody =) loud.)  However, it seems, when it is CF related, she somehow already knows how to deal with the rough parts, and get through it.  She is becoming aware of her body.  She is starting to be able to tell me when her lungs feel tight, or when she thinks she might be getting sick.   She pushes through the cf crud and when it is over, it is over for her.  She’s already moved on to other “real non cf life” stuff.  It wasn’t until this friend said the words that I realized that Rachel is already aware of the high stress that CF causes me.  I tell you, cf peeps amaze me.  The trials that they must endure, give them a maturity that far out weighs their years.

I pray that Rachel has much of the same attitude toward her disease as so many of the veteran cf friends.  As a whole, they are some of the most incredible people that I know.  They understand the joy and brevity of life in awesome ways.  They work hard for every bit of health they have.  They face their fears, and work to quell the storms that are certain to rage inside with death and sickness always remaining before them.  I praise the Lord for the many positive older “Cysters and Fibros” (Cysters-girls with cf, Fibros-boys with cf) that Rachel will have to look up to.  Ones who are married, and have a families (even the furry kind), and are working to enjoy this life they have been given.

I pray that Rachel will be like my sweet friend.  She is sweet, feisty, funny, faithful, and cares about those close to her.  She does not let cf get her down.  She can laugh that there is a “coughing party” in her hospital room, or that those that don’t know her are certain that they are going to “catch” her cf cough.   The Nemo mentality “keep swimming, just swimming” is one of her favorites.  I love it that she can laugh at the crud that cf throws at her.

I already see some of that incredible spirit in Rachel, but I continue to pray that God will not only give her that amazing spirit, but also the ability to hand everything over to the Lord and appreciate the life that she has been blessed with.  I pray that she has the same cheerful, Christ-centered spirit as some of the wonderful veteran CFers that I know.  May it all be for the glory of the Lord!


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