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Great Strides Walk recap

Wow, I can hardly believe it’s been almost three weeks since the walk.  Time. MARCHES. ON!  We had the walk one Saturday, and then we cleaned up from that and immediately continued preparations to do the Homeschool Track meet the next week, and then following that, company that stayed with us for a few days.  Makes for days flying faster than I can keep track of.

So, a recap of the walk.  It was a beautiful day! It was raining and a bit cool, but a day full of HOPE, which makes for a wonderful day. We were pretty discouraged to see the rainstorm begin right as we got in the car to go to the walk, but alas, so very typical of CF.  Cloudy, stormy, and many times raining…but we walk despite it all.

SURPRISINGLY, we had an AMAZING TURNOUT in the RAIN!!!

I can not tell you what a joy and encouragement it was to our hearts to see SO MANY FRIENDS and FAMILY standing in the soggy, pouring rain to support our girl, and her life and future.

PRICELESS
and
PRECIOUS!!!

There is something about walking in the cf walk each year that is raw and emotional.   No matter how I prepare…it just is.  It is the reality that CF is a horrible disease.  That it is painful.  That it is trying to steal lives.  MY GIRL’S LIFE!  Definitely makes it a difficult day, in the midst of fun atmosphere.

It’s always fun to see the mascots.

Love these ladies. So thankful for the love, care and support that this family has been to us over the years. BLESSED!!

This family has loved on us for MANY years. These are our “horsey” friends from Victory Riding Academy (VRA). Thankful for the prayers, kindness and encouragement they have provided to our family. ❤

Love our faithful friends who come and stand in the rain with us. They are the BEST!! and we are so THANKFUL!

More amazing friends that came prepared to endure with us. That is true friendship!

One of my dear “youngest/longest” friends. Encouraged and uplifted by his constant care for our family.

The rain was coming down pretty good. Still there were smiles.

Ready for the walk to start. Rainy weather…don’t care. CF doesn’t stop, so neither will we.

Might need to call this the “Umbrella walk” this year. Sweet friends still smiling despite the rain. Overwhelmed with gratitude.

Entire families joining in our quest for a cure. HUGE encouragement.

Prepared for the rain. Smiles in the midst. THANKFUL!

Amazing to see the people from so many areas of our life. Delighted to see each and every one of them.

Hiding from the rain…but walking alongside us still. Encouragement growing.

Sweet neighbors that have been awesome to us through the years. Soaking feet, smiling faces!

Nothing like having friends that will literally walk with you in the rain.

This year I again saw more issues transfer to Rachel’s shoulders.  Each year I am a little uptight knowing there are potentially many others with cf there walking.  When Rachel was little we just didn’t bring her to the walks (she was about 5 years old before we brought her for the first time). But each year we have gone to the walk with Rachel we do so with much caution.  She wears a mask. And then, we generally put a family member or friend on “Rachel duty”.  Meaning trying to keep her in a “people we know” bubble.  The people that go to the walk with CF are asked to identify themselves with either a purple shirt, or a sticker or in some way show that they have cf.  It is for safety concern as those with cf are not to be near one another due to serious and potentially dangerous cross contamination issues. This year was very, VERY STRESSFUL for my girl.  I did not know until we got home, just how stressed she felt being there.  BUT…it came out in tears when we got home.

Rachel really dislikes wearing a mask, but she does so to protect herself. Seems so fitting wearing the STAND OUT tshirt this year.

We have Rachel wear a mask when there is a potential of dangerous germs, and especially those from other cfers.  Paying close attention, and having a “guard” are the systems we have chosen to put in place to protect her.  However, this year Rachel felt like everywhere she went there was someone with cf.  A purple shirt, identifying a person with cf!  We also had several situations where adults graciously came up and talked to either Paul or me, who unbeknown to us, had cf.  We are Rachel’s safe people.  Having to shoo her away as we learned the adult right in front of us also had cf was hard.  It was especially difficult for Rachel.  I find it so interesting in a wonderful and yet frustrating way that you can not identify those with CF.  It is invisible to the outside world!  But, for an adolescent girl,  learning how to deal with this aspect of cf on a personal level is challenging at best.

My girl!! Love her tons!

On the way home, Rachel kept saying that she was so sad that it rained.  And, that it seems to rain EVERY. SINGLE. YEAR!!! I explained again that we can not control the weather any more than we can control CF.  We just have to take what we get, praise Jesus for the strength and energy of the day, and move forward. As well as focus on ALL OF THE AMAZING PEOPLE THAT MADE IT BETTER BY STANDING AND WALKING IN THE YUCKY RAIN WITH US!!  I thought I handled it well enough, but Rachel was still sulking and discouraged after the walk.  She actually cried when we got home.  Unfortunately, I started getting upset with her feeling like she was being so unreasonable about rain.  It was just rain.  I tried to compare it to the fact that CF throws a lot of rain at us and we can either sulk or choose to keep walking. (Side note, the day of walk Rachel walked through EVERY PUDDLE she could find!  There was no way of avoiding getting wet, so my girl decided to make it fun by feeling the splash of the water as she marched through it.  So fitting of her personality.)

As I was tucking her into bed that night she mentioned again that she hated the rain of the day again.  My patients and frustration got the best of me and I told her she was being stinky about the rain and the walk.  I kind of gave her a piece of my mind explaining how so many came and got drenched with us.  All for her!  As I was ranting at her, I realized that most people came for the picture, a quick walk and then left immediately after (because who wants to hand out for a rainy picnic, and it was May and there are usually a hundred things to do on a Saturday in May).  It occurred to me that Rachel had NO IDEA how many people there actually were at the walk.  I ran down, got my camera and SHOWED her all of the people that had come to walk alongside us in this CRUMMY RAIN, because they loved her and wanted to show her support.  I realized at that point that she had NOT SEEN the group photo when her eyes filled with instant tears.  She was in the picture.  She did not SEE THE CROWD of love that surrounded her.  I could see the HOPE being restored to my girl’s heart. She was amazed and overwhelmed.

Through her tears, she was also able to finally express another feeling from the day in words.  She explained to me, “I felt so scared all day!  Everywhere I walked there were people with purple shirts! I felt trapped to move anywhere.”  Oh, my sweet girl.  My heart finally felt the weight that she had carried all day.  The Great Strides walk is one of her ABSOLUTE favorite days of the year!  She loves seeing each person that comes out to walk alongside us to fight for a future!  A day where cf has a bit of joy mixed with the struggle of the daily grind.  A day where we celebrate the future and hope.  A day where people smile, laugh and play…all around cf awareness.  And, because of the rain, people definitely congregated more under the tents and umbrellas and were very close in proximity to others.  She was sobbing at this point, “CF is so, so hard every day!”  Then began the mama heart expressed to her, “Oh, precious girl, I can not ever, ever feel the weight of what you or others with cf carry.  I wish I could.  I desperately wish I could TAKE IT ALL AWAY!  But, I can not!  I can, however, listen. Pray. Hold and love you through this incredibly painful process.  And try to help you see the world in the best light possible.  I can strive to point you to Jesus’ love and care His Light and Hope that shines through others that serve him.  I can try too help you to figure out a way to walk bravely through the perilous journey that comes with CF.”  We ended the night well and discussed things we would do to help navigate it better next year.

We had to take a picture of (most) of our families together. These two amazing people were THE TWO that came out with us for the very first walk. They will FOREVER have a special place in our hearts. Not only for that…but because they are just pretty awesome people! But wow, look how our families have grown. =)

Some of the kids’ friends that came out to walk with us. SWEET, SWEET encouragement to all of us. Such a reminder that CF is not just a disease that affects one person in our family, but rather the ENTIRE family. Thankful that so many of each of the kids’ friends came out to spend time with them.

In the days since the walk, we have been able to process and dialog on changes we will make for the next year.  Asking to have our tent AWAY from everyone so Rachel can freely move among “HER PEOPLE”.  I will also gently encourage her when we take the team picture to come up front and LOOK, at EACH AND EVERY SINGLE PERSON in the EYES! Help her to fully recognize all those that CARE to make her life different. THERE IS SO MUCH POWER IN THAT! There is hope in that, and there is freedom in knowing that these people are here for her! She needs to see that, and I realized my oversight in that fact as I tucked her in bed the night of the walk. I apologized to her for not being more sensitive, and communicative with her on expectations.  CF throws so many curve balls at us, sometimes we can see them coming and many times we have to adjust after the first strike.  This year was, again, one of those learning curves.

We have some of the most incredible people in the world that love Jesus, and love us so very well.  As I see people post pictures with their Stand Out shirts on FB and see them wear them in person…I am overwhelmed with gratitude for a God who has not asked us to walk this journey alone.

Thankful for this man that makes me LAUGH through the rainy days.

Grandma and Rachel. Thankful for the MANY, MANY ways that she blesses our family daily.

Silly pictures

Our amazing family. (Missing a few.) We don’t know what we would do without each one of them.

Our nuclear family. Our joy and blessings.

Didn’t get a great picture of Rachel because she was so busy smiling and being silly. But…here is the best one. Mom, dad, with our CF warrior, Rachel.

Again, we say thank you!  This a from deep and abiding hearts full of gratitude.  I say it each year, but there are no words to truly express our hearts that are filled with the love of our family and friends coming alongside us working to raise awareness and fund a cure for Rachel’s life and future.  We are getting so close…every new medication that is being researched is because of YOU!!

Thank you for being part of Rachel’s Raise of HOPE!!

You again, proved we have the best team on the planet…and we will continue to

STAND OUT

and…cure Cystic Fibrosis!

 

 

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