“I hope you never lose your sense of wonder…”

When Tommy asked me to write for More Than Just Me, I jumped at the chance. He said for my first blog, that he would like me to write about Leighton. I thought “piece of cake!  I’ve written about this kid before.”

Here I am, 3 days before I need to have it ready for y’all to read and I’m just starting to write.  I wanted to come up with a list of questions to ask her. I planned on taking some video footage, but she was not cooperating.  We did get some pretty awesome photos, thanks to Bailey Self at Self Portraits Photography!

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I didn’t expect to see her this past weekend, but her and her mama just happened to fly into my state to visit family. Well, any time she’s within driving distance, I’m there. I know you clicked on this post to read about a little girl with cf, but it’s hard for me to tell you about her without there being a little bit of me mixed in.

For almost the first year of Leighton’s life I only knew “of” her. I was friends with her aunt and mom in high school, but honestly hadn’t spoken to them in years.  At one point, I began to feel a pull to do something.  I felt the need to reach out to Sarah(Leighton’s mom), so I did.  I still remember the day I asked if I could call her, and thus began the first of many phone calls.

Eventually Leightons Legion was created, and an amazing group of people came together to raise funds and awareness for Cystic Fibrosis.  We don’t just raise awareness, we work hard to spread kindness.  Enough about all of us though, let’s get back to Leighton!

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Yes… she has Cystic Fibrosis, but it does NOT define her. She is the most free spirited, amazing little girl I’ve ever met. She is funny and kind. She loves, loves, loves to dance! Sometimes it’s easy to forget she’s five, because she’s so full of wisdom.  Through the years I’ve watched her grow.  Her journey has changed me.  I’ve been to clinic visits, sat through treatments with her, and learned how to properly sanitize her nebs.  One week in particular, it seemed like every night at treatment time she did NOT want to cooperate with her mama.  After about three days of watching her cry, I figured out that if I pretended to be a nail salon lady it would distract her while her shaky vest did it’s thing.  She doesn’t always cry at treatment time, most days she handles it like a boss.  It’s just that Cystic Fibrosis consumes so much of her time, occasionally(just like anyone else) she reaches a point where she’s sick of it.

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When that point comes, they don’t have the option to back off on her treatments.  The vest doesn’t stop shaking just because her little eyes fill up with tears.  It hurts my heart a little for her to finally be big enough to realize that she has this disease.  If we’re out in public and she smells cigarette smoke, she knows we can’t go that way.  When she wants to eat, she remembers to take her enzymes first.  She sits perfectly still while her mom does a bolus feed via her tubie.(feeding tube)  The fact that she even knows what a bolus feed is, amazes me.

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Her mom is constantly reading and learning anything she can about Cystic Fibrosis and ways to keep Leighton in top shape.  I know on most days it feels like she’s fighting a losing battle.  She keeps fighting anyway!  I’m sure there are times it feels like no one sees or understands what she is going through, but somehow she manages to shake it off and continue.  Sarah and Jared do their best to keep a positive outlook in the midst of it all.  It’s not always easy to smile while waging a war, but that’s exactly what they do.  The Volners are some of the most positive people I have ever met. They have joy, in spite of the fact that Leighton has Cystic Fibrosis.

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CF is not just a disease. It is a thief. What do you do when faced with a life threatening disease?  Maybe, even if you are perfectly healthy, you should consider taking a page out of the Volner’s book.  Any time I’m near this family, I see them living their lives to the fullest.  They aren’t afraid to get out there and experience the world.  Sarah often talks about contentment and peace.  I find myself wondering just how she can find contentment and peace in the middle of this battle.  I’m positive she would say she finds this place of peace by leaning on her faith.  Leighton seems to find that same peace in the faith she shares with her mother. Often times, she’ll get quiet and when we ask what she’s doing we’ll get, “talking to Jesus.”  I think you’ll see that every single one of the people I write about has a different way to find their “peace” in the midst of Cystic Fibrosis.  For some it may be faith, for others it could be their connection with their Cysters and Fibros.

Leighton’s Legion is all about spreading love and working towards a cure.  Why do we fight?  Simply put… Leighton has touched our lives.  She inspires us to be better people.  Her legacy on this Earth is just beginning, and we can see the light she is and will be in this world.  I’ll leave you with this one thought:

A light bulb doesn’t spend it’s time worrying about being a light.  It doesn’t wonder how it’s going to shine, or when it’s light will be the brightest.  It just shines when the switch is flipped.  It shines when the room is dark.  It shines when people need it the most.  It doesn’t have to try to be a light.  It knows what it is made to do and does it!  I guarantee more than half of you reading this KNOW what you are made to do, but you let fear hold you back.  Fear can make your light shine a little less brightly.  Instead of cowering when fear comes knocking, square your shoulders, hold your head up high…..  and SHINE!


“And when you get the choice to sit it out or dance… I hope you dance!”

 

 

 

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