Tuesday, November 1, 2016

Eric Church, unshaved legs, and evidence of the guinea pig

Carefree childhood erased.
Constant monitoring replaced.

It's a line I wrote as part of a piece I delivered to a room full of 700 people in Charlotte, North Carolina last week.
But those are not just carefully crafted words, they are a reality - for my daughter, Lucy, and millions of others who face the daily challenges of living with Type 1 Diabetes.

The JDRF Hope Gala will be a forever memory for me.  I wish you could have been there.  For fun I thought I would share the behind the scenes story and my brush with a celebrity {wink, wink}.

A few months ago my friend Anne came to visit me in Clemson.  I took her downtown for a sushi dinner.  We huddled together on bar stools at a table by the window as students streamed in and out.  I thought back to those days long ago when I was one of those students.  Back then I didn't know a thing about type 1 diabetes.  Now I'm pretty much an expert.  So is Anne.  Both of us fill-in as a 'pancreas' for our children on a daily basis.
We've seen the carefree childhood erased.  
We've lived the constant monitoring replaced.
And we've cried rivers of tears.  A few were shed that night over our spicy tuna rolls but in between the tears we dreamed of a better future for our children.

Anne has been one of the biggest cheerleaders of my book, Type Onederland, which is a mama's honest perspective on having a child with chronic illness.  Anne has helped me in countless ways to spread the message of hope found in hard places.  That night she asked me if I would be willing to offer a few words at the JDRF Gala this year.  I did not hesitate to say 'yes'.  It was an honor to be asked and it is my responsibility to put words around the reality of this disease and the need for a cure.

When God called me to be a writer at a young age and then a speaker many years later, I had no idea this would be one of the platforms he would provide.  It is bittersweet.  If I could take Lucy's diabetes  away today I would do it.  But until we find a cure I have the sweet privilege of offering a voice in this community.

As most of you know, I am way more comfortable in flip flops or cowboy boots.  Wearing high heels and an evening gown is fun but also nerve racking when you have to actually walk up stairs and onto a stage in front of people without tripping and falling {when all you can think about is tripping and falling!!}.  I'm so used to hopping up in front of people in jeans and a cute, comfortable top so that I can focus on what I'm saying instead of how I'm walking or whether my panty line is showing.  But jeans just don't work at a black tie event.

The day of the gala I was running in a dozen different directions trying to get my kids and the dog situated.  Joey was heading out of town for a big golf tournament so we were just a little extra crazy.  I drove from Clemson to Columbia to drop Lucy off with a friend.  Let me pause a moment and make sure you grasp the significance of this.

Lucy has a disease that she would die from if it were not managed properly. 

Friends who are willing to take that kind of responsibility on are few and far between.

My friend Laura is one of them.
Laura and Me
Laura's presence for Lucy that day was just as important as my presence at the gala.  While I was doing my thing to help raise bunches of money Lucy was having the time of her life at the state fair with one of her very best friends and then enjoying a rare sleep over.
Lucy and Sydney
All day and into the night Laura and I texted back and forth about carb counts and insulin dosage and blood sugar levels.  It is part of our everyday.  Type 1 requires constant attention.  I'm grateful for a friend who is willing to make it part of her everyday sometimes too.

These are just a few of the dozens of texts that went back and forth between us.  You don't get a day off from T1D.  You don't even get an hour off.  That last text was sent at 5am.

So...after I dropped Lucy off with our dear friends, I made it to Charlotte just after lunch to meet with the gala team.  These people are rockstars and I have no idea how they put together such a beautiful, seamless event.  Clearly they are much better with details than someone like me who actually left her razor, brush, and flat iron at home {but more on that later}.

At our meeting I got the very secret word that Eric Church and his wife would be there that evening.  They were coming to pay tribute to Eric's mom - Rita - who has type 1 and was receiving an award for her commitment to JDRF.  After the meeting I ran out to the parking garage to grab my things and check into my room.  I looked like a bag lady as usual because instead of packing everything in a proper suitcase I always wind up with everything crammed into 10{-ish} random bags.  I was hoping Eric Church and his wife wouldn't be checking in next to me and realize right off the bat that I'm a hot mess.  Then again, they probably don't check into their own rooms, right?  They probably have 'a person' for that.  Which brings me to the point I have been trying to make for years to my husband -

I need a full-time personal assistant to be with me at all times.

I'm not saying that in a diva sort of way.  I'm saying I have a tendency to get involved in all sorts of things and within all those things there are a million little details my frazzled brain can not keep track of.  I digress, but as this story progresses I may actually prove my point.

After my sound check in the ballroom I remembered I left my books in the car and I needed them that evening.  Of course I couldn't remember what floor of the parking garage I parked on {personal assistant, anyone??} so it took me an extra 5 minutes to hop off at each one and check.  I finally located my mini-van {a.k.a the garbage can on wheels} and after digging under a few bags full of things that need returning and a dozen random toys and pieces of trash, I found the books.  On my way back to my room I had to walk through the gala check-in area where all the staff and volunteers were already dressed to the nines and I stuck out like a sore thumb in my work-out attire, greasy hair, and no make-up.  I ran into someone I know who immediately had a friend snap a picture of us together - her looking elegant and me looking like I just rolled out of bed.  I told her to be sure to post in black and white and of course she did not, but I love her anyway.
I ran the books back up to my room and realized I had only 30 minutes left before I needed to shower and get ready.  I had put on my work out clothes that morning to ensure I would go for a run so I was bound and determined to squeeze one in.  I went down to the hotel gym and picked out a treadmill.  There were only a handful of other people in there and one of them looked a little familiar, but I didn't have time to figure it out.  As I began to turn the treadmill on I realized I hadn't put my hair up in a ponytail.  Ugh...that would be a sweaty mess in about 5 minutes!!  But I didn't have time to go back to the room so I just went with it.  Twenty minutes later I had run 2 miles and was on the floor doing planks with my hair matted to my face when it dawned on me why that guy looked familiar.  It was Eric Church...and his wife.  And the one other dude in the room was probably - you guessed it - the personal assistant.  He's the guy that keeps the creepers like me away and probably could scrounge up a ponytail holder in a skinny minute.  {No, I didn't ask him!}  I would have liked to chat with them all.  They looked so nice.  But no time + matted sweaty hair + I don't stalk celebrities meant I just looked at the back of their heads while I stretched and then hot-footed it back upstairs to get ready for the gala.

My dress was hanging up on the back of the bathroom door and looked pretty wrinkle-free so that was good.  I got my things out to shower and realized I forgot my razor.  Good thing my dress was floor length.  I wouldn't want everyone being distracted by the hairs glinting in the spotlight while I was on stage later.  After a quick rinse off I got out to brush my hair and put on my make up.  Another minor snag.  I forgot my brush.  I took it out of my bag earlier to put Lucy's hair in pigtails and never returned it, of course {ahem...personal assistant}.  I quickly texted my friend Nancy who was coming to the gala and asked if she had a brush in her purse or car I could borrow and could she run it up when she got there.  My angel of a friend showed up 15 minutes later with her husband's bristle brush which she found in the floor board of her car.  She promised she had cleaned it out and I was more than happy to make do.  I knew my hair might blow out a little frizzy with it but I could fix that with my flat iron.  Well, I could have fixed it with the flat iron if I hadn't left that at home too.  It was looking like I wouldn't be perfectly presentable after all but I would find a way to make it work...story of my life.

I slipped my dress over my head and as I did something scratched me.  As the hemline fell to the floor I could tell something was snagged on the bottom.  I lifted the dress up to take a closer look and that's when, thankfully, I found and removed the piece of pine bark from the guinea pig cage.  That would have been a nice touch up on stage too.  Another crisis averted.

I hadn't had time for a manicure in about, oh, 6 months so I had shoved some finger nail polish down in one of my bags.  Before Nancy came back up to get me I searched through all of them until I found it at the bottom of my computer case {of course...just where a personal assistant would have put it too, I'm sure.  My organizational skills are blowing you away by now, aren't they?!}.  I was painting away when Nancy arrived so I finished up, waved them around for a few seconds and was ready to go.  I'm sure Katherine Church pretty much had an identical 'getting ready' experience up in the penthouse suite.  Right?

My head was a little spinny and I was a weird combination of tired and wired {which may or may not have been due to the nail polish fumes} so when Nancy offered to pray with me I grabbed her hands with perhaps a little too much eagerness and plopped down on the bed next to her.  Everything in me stilled and my purpose became clear again and the details didn't matter and I was ready to do what I had come to do - be the mama voice for the T1D community.
I'm sure you're all dying to hear about my incredible experience meeting Eric Church.  Well, it was two words tossed to him and his wife as we scooted down a back hallway past each other - thank you.  It's all I could get out on my way to reapply my lipstick before taking the stage.  {I was hoping to draw people's attentions to my lips and away from my flyaway hair}.  I never got to see them again, but my two little words were heartfelt.  If you aren't an Eric Church fan, you should be.  Those people are the real deal.  I was genuinely overwhelmed with gratitude to them for taking time out of their busy schedules to support an organization that supports our family and I was blown away by their generosity in donating a million dollars to fund research that will benefit my Lucy and all the others living with type 1.

And that was really the big significance of the whole night for me.  It's one thing for people to write a check.  It's another thing for them to show up.  Once I made it up on stage {without stumbling at. all.  Yay me!} the spotlight settled on me and I took a breath.  Before I opened my mouth I took it all in - all the faces.  All those people had shown up for us.  A wave of emotion washed over me and I wished I could sit and thank every one of them for caring enough to wear tuxedos and evening gowns and walk around in high heels and curl their hair and apply extra make-up and get a babysitter and sacrifice a Saturday night to say - 'your suffering matters to us and you are not alone.'

It's what we all want to hear, isn't it?  Yes, this stinks.  Yes, it's unfair.  Yes, you are suffering.  But we are with you.  You. are. not. alone.
It was difficult to squeeze my own personal experience with type 1 diabetes into 5 minutes, but by the grace of God I think I did okay.  I can tell you this - every one of those precious people in that ballroom gave me their undivided attention.  You could have heard a pin {or a needle : )} drop.  And when my eyes began to water up they made sure I wasn't the only one to shed tears.

You. are. not. alone.

November is National Diabetes Awareness Month.  Type 1 Diabetes has stolen so much from my little girl and the rest of our family, but because of it we have also been offered so much more.  Last Saturday night was a gift - one I will keep re-opening over and over again in my memory.  Those are the moments that help me keep a hold onto hope in the hard places.  Whatever hard place you may be in today - hold on.  You're not alone.

“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all –

And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -

I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.

~Emily Dickinson

A few grainy pics from the evening {the lighting in there was not conducive to photography people!}...
Nancy - my super friend - to the rescue!

Our emcee - Larry Sprinkle.  This man has a heart of gold.

Eric and Katherine making their presentation.