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    Blessed by the Lord for the Joy of family!!

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    Albuterol (2-4 x)
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    Glutathione Inhaled (2x)
    Advair (2x)
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    Vest (2-3x) 30 minutes
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    alpha lipoid acid (1x)
    singulair (1x)
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    zyrtec (1x)
    azithromyicin (M, W, F)

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Fearless Ripples- CF SHIRT

This has been an interesting week to say the least (two doctor’s appointments, 1 surgery consultation, an almost unexpected hospital admission, lots of tears, and a WHOLE LOT OF PRAYER).  Funny thing, I knew to expect this, all last week I felt like we were experiencing the calm before another storm.  You see that is the thing with CF, even if you experience calm waters, you know there is always another storm on the horizon.  It might not be today, or this month, or sometimes even this year…but because the nature of this monster, you know that you will need to face many more storms. Some are small like extra treatments, and worry over how bad this cold will be. Or insurance complications, or compliance issues and not wanting to “be sick” and take medications and treatments.  But still others of our community, it is the storm “of” their very life and breath!

It is actually 3;57 am, and I have been tossing and turning for about the last hour and half.  Thoughts, words, ideas, lists, prayers all running through my mind.  So many, that I felt compelled to get up and write them down. As long as I am not sleeping, I may as well put pen to paper (or fingers to keyboard) and get the words out of my mind!

Last night I was working with our AMAZING designer on a final design idea for our t-shirts.  I have had the theme FEARLESS for over a month now.  Isaiah 41:10 has been on our minds, hearts and lips often!

FEAR NOT, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

And, we have come up with tens and tens of designs, they all were just…not right somehow.  However, we are now just three weeks away from needing to order and pay for shirts.  I knew that I NEEDED to start selling shirts this week (well, actually last week or the week before that but it just didn’t happen)!!  Our designer has been wonderful, patient, and very helpful!  A true blessing to us.  Our t-shirts represent hope for Rachel.  Each shirt is a sign that someone cares.   That someone is willing to invest in helping my baby girl, and spread awareness that this disease is stealing young lives.  The dollars we raise from our shirts is money that goes directly to research!  $.91 of every dollar WILL MAKE A DIFFERENCE for her future through groundbreaking research!  The research that we pray will find a cure for this disease before it is too late for Rachel.   And, as much as I hate fundraising for my daughters life and future, there is something that I equally despise and am deeply touched through every year.  To humbly come to our friends, family and sometimes complete strangers and ask, no beg, for them to join in our fight to give me more time with my precious girl, is beautiful!

Yesterday, I was playing “eenie, menie, minie, moe” with the designs because there was something cool about all of them and I knew that I just needed to pick one and be done.  So I tentatively did.  A bit later I saw a post from a fellow cf mama friend that said she got a new tattoo.  It was of ripples.  Her quote was:
“I will not be discourged. Small individual acts can sometimes feel futile…but I have to believe that those small ripples we create might gain the strength to swell the ocean and turn the tide.”  
Then my designer came back with some changes to one of the designs but said she threw in an additional design.  Guess what it was?? Ripples of water behind fearless.  Her take was that God was using the ripples to change the tide and find a cure for this awful disease!  I could not help but think about my joy in being reminded that God is ruler of the storm, the seas and all of life.  TELL ME IF THAT ISN’T COOL!!!  On our own, we are not FEARLESS, but it is in fact because of our FAITH in a loving God that we can even hope to stand under the storm of this life.  Hence, we hope through His grace, that the RIPPLES of our cf struggle and “small faith” that it affect others to live lives dependent on his unfailing love. 

**************************************

And with that…here is our shirt for 2017!!

FEARLESS
FAITH
That causes a ripple effect!!!!

May that be the story of our lives as we continue our battle with Cystic Fibrosis.

 

As I said, unfortunately we have a very limited amount of time to order shirts this year.  And with the uncertainty of next weeks procedure and hospital stay (dr said it could just be overnight, or could be up to a week so plan and prepare for both),  we would be so honored and grateful if you would flood our email with orders right away.  I can not tell you what an encouragement this is to our entire family…but especially my Rachel.  Feel free to spread the word to whomever!!  It is our humble, and overwhelming joy to have a team of people fighting with us to save our girl’s life!

****Please fill out the google doc form! https://docs.google.com/forms/d/e/1FAIpQLSe6Zzs7ggnJZx6nYQY39gUYfDSmcXqR_QwBJ5CliC7N1qVsAg/viewform?c=0&w=1
***You may pay through paypal to jcleadsus@msn.com $12 a shirt (please add shipping to your order roughly $4 shirt) you may also pay by sending a check to us directly (email me for the address to jcleadsus@msn.com)

Isaiah 43:2″When you pass through the waters, I will be with you; And through the rivers, they will not overflow you. When you walk through the fire, you will not be scorched, Nor will the flame burn you.

It seems life is full of storms.  There is always a ripple of something, for every single person.  It could be something like a difficulty at work, or a child that won’t sleep through the night, financial issues, relationship problems, family issues…or an incurable disease.  But we all have them!!  And what do Jesus ask of us…to trust Him with our all!  Cast your cares on Jesus.  He doesn’t care how big or small they are.  He wants us care for us… no matter what storm we are facing!

Be blessed, full of FAITH and FEARLESS! 

You may also donate online to our Great Strides page.  http://fightcf.cff.org/goto/RachelsRaiseofHope

 

 

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