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ONE BIG REGRET FROM TODAY

What other words could I possibly use to describe today?  Today we literally were surrounded by hundreds of people who were aware of, and fighting for, a cure for the deadly disease of Cystic Fibrosis!  One step and one walker at a time.

Every year the Great Strides is an awesome event.  From our very first one a DECADE ago where we decided last minute that we would check out what this event was all about (and had two precious friends go along with to “hang out/support” us checking it out), to today where we are in awe of God’s great goodness to us through the incredible amount of people who came to support my girl’s life.

There are so many things to process and take in each year.  And, it is an emotionally charged day EVERY. SINGLE. YEAR!!!!  (Ask any of my friends that I try to thank, it doesn’t usually go so swell, or at least not without some tears threatening.)   The words THANK YOU come so deeply loaded that just the act of saying them out loud…recognizes the fact that we know we could not walk this road without such an incredible amount of people backing us. 13220639_10155503971746959_4909744404966408783_o-2

However, as I reflect on today, I have one small, but actually kind of large regret from today. As we asked our team to walk over to take a picture, I knew I saw a wave of people heading over.  I was trying to be more concerned about making sure everyone was in the picture than to thinking through my thoughts and emotions (as I know seeing our entire team together is pretty emotional for me).  So, we lined up to take this team picture and everything was great.  The photographer kept saying, “Scoot in, slide over!” and so on until he finally snapped the picture.  Didn’t think too much of it until this afternoon when I was showing Rachel this picture and she got a HUGE smile on her face.  She said, “I didn’t know that there were SO MANY PEOPLE behind me!” (she was in the front row, and she was referring to the hundreds of people in our picture). Wow, what a deeply weighted statement in so many aspects!!!
So, onto my one regret today.  I had thought about bringing Rachel up in front of everyone to say thank you, and for her to look at the sea of people in HER TEAM… But, I knew that if I looked full on at this group of people that I would be an emotional mess. There is something so fracturing to see people willing to engage in the messiness of a fatal, crushing disease and care enough to take a stand to help.
SO I DID NOT BRING HER UP!!
What I failed to think through is the incredible impact it would have been for her to actually see the faces of SO MANY that care that this disease of cf is hard on her day after day. OR, that the days that cf causes her to kick and scream and wish that her life were easier…that this group of people are/were willing to stand and walk with her to bring hope and light and a cure to cf and all that she faces.  I am so saddened that I allowed my own fear of breaking down in front of this group of people that LOVE our family kept me from letting my girl see and feel the full strength of love that helps propels her forward on the days that cf literally knocks her to her knees!!   This is bringing tears to my eyes as I type.  =( I want to teach her to rely on God first, but friends and family second.  I want to teach her that it is okay to be transparent and real with others.  Life is sometimes hard.  No one expects us to have a smile on our face at all times.  But, I am afraid that I lost a very valuable teaching, experiencal moment. I am so thankful for the picture, but after her comment…I would have liked to have had a do-over of this moment.
The older Rachel gets the more I am recognizing the loneliness of CF on so many levels.  I am starting to recognize it in my baby girl.  She is watching and aware more keen than I even give her credit for. If any of you saw her this morning, she was over by our tent away from everyone else and the fun festive atmosphere of the day. Why? Because she knows that others with cf present a major threat to her wellbeing (due to the fact that others with cf can pass dangerous bacterias to one another, and that you can not tell who does and doesn’t have cf, she has to play it safe). In her short life she has already learned many self preservation responses!  She has learned to guard her body when her special friends have a cold or the sniffles. She has a barrier up and will try to stay away from them, which I can only image.  How DIFFICULT that is for someone so young. Often she doesn’t tell them, but she just makes herself look busy “away” from them. =( Breaks my heart to see this transpire and know what she is doing.  I can only imagine what is going on in her little head.  Oh, Lord guard her mind and body from the scaring that this disease.  I see the protective, mature and self guarding she does and it both makes me proud and sad at the same time. Sometime I can not help but wonder how her life would have been different without cf, but I honestly don’t let that thought register too long, because I think about the amazing part or her that CF has shaped. The part that allows her to live in the moment. To find joy and happiness in the little things. The ability to SMILE LIKE CRAZY when life is easy. And, to weather the storms with grace and a bit of grit when they are hard. As the national anthem was sung today, I had a lump in my throat thinking about the “home of the free and the land of the brave”.  I couldn’t help but think of all of the BRAVE WARRIORS out there today…mine included.
I will show her this picture again, and again especially when we are feeling a little beat down by cf.  Because…althought it is a picture, I need her to grasp how deeply she is loved and that the Lord NEVER allows difficulties with out a purpose and a plan!  He has an amazing plan for her life that just happens to involve Cystic Fibrosis.  And, she will likely need to be reminded often that THESE are the people that pray for her, encourage her and the rest of her family, these are the ones that CARE!!!
And…these are the faces of
RACHEL’S RAISE of HOPE
…and WE WILL CHANGE HER FUTURE!!! One step at a time! ❤ Thank you, thank you, thank you from the depths of our hearts!! ❤
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