Thursday, April 14, 2016

Bravery: A Lifelong Condition

My phone lights up with Facebook messages and it is the group we have named “The Real Housewives of TSC.” One of the moms just found out that her child has a SEGA (a life threatening brain tumor) that is growing yet again. The news is devastating. We are all reeling, because we were just talking about how this sweet boy was probably “out of the woods” with this tumor. Another mom chimes in with her shock and then adds that she is on her way to the hospital with her son, which will turn into almost a week stay. All this within 48 hours of getting home from our Novartis, Tuberous Sclerosis Blogger Summit. “Medically fragile” is a lifestyle for all of us and it is not for the faint of heart.

Disclaimer: While I was not paid for my time at the summit, my travel, hotel and food expenses were paid by Novartis.

The Summit was short, but things changed for me in those 24 hours. As everyone got to know one another there was a genuine warmth that filled the room… and lots of laughter. The unexpected thing about people who deal with suffering is that they usually have a wicked sense of humor. “Laughing so hard I am crying” is kind of a way of life for us. You learn to laugh anytime you get the chance, you learn to chase after joy instead of expecting it to bloom before you.

Oliver’s predominant issue with TSC is the seizures caused by the brain tumors. TSC is a very complex disease and affects a great deal of the body, but the brain is the most precious. A seizure filled brain has halted his development and fighting with the seizure monster is a daily reality. It’s a reality for all of us blogger mamas at the Summit.

Among Epilepsy drugs there is a somewhat well-known 30/30/30 rule. I realize the math is broken and I’m not sure where the other 10% goes, but bear with me. The idea is that for any treatment 30% of kids get results of no consequence, 30% get moderate seizure reduction and another 30% get wonderful results or even that miraculous gift of seizure control.

The 30/30/30 rule changes when it comes to brain surgery for Epilepsy...50/50 is the rule of thumb, especially when seizures are localized. So half the kids get a miracle and half of them do not. When Oliver had his brain surgery, sadly we were not part of the miracle half.

I am still on the hunt for a miracle for Oliver, but those percentages stare us in the face. The Summit gave me hope for mini-miracles though, as I heard what had worked for the other children. It was amazing how the same drug or therapy had wildly different results depending on the child. We discussed Novartis’ research on the mTOR pathway and their medication, Afinitor, which is meant to slow down or shrink those life threatening SEGAs.

Novartis’ education materials for TSC beautifully articulate the lifelong reality of this disease, but woven through the pages of the booklet, are the themes of curiosity, imagination, and bravery.  My favorite page simply states: bravery is a lifelong condition too.

I left the Summit with education, but also hope for those mini-miracles. I walked away richer in friends and more deeply connected to the TSC community, a community that has chosen this as it’s motto:

We will give everything, but up. #iamtsc

Heather, Laurisa, Tina, Becky & I

Fast forward a few weeks home and I am in a seminar given by our company's wealth manager, Jason, at a local country club. He has flown in an expert on grief who can help us better communicate with our clients in their times of loss. Clearly, TSC has given me a more intimate window into grief than I ever wanted.

When it was over, I asked the presenter what to call my experience with Oliver. I knew I was stuck in some kind of continual grieving cycle and wondered if a grief expert had a term for this tortured experience. Was there a word for living in a constant state of uncertainty? She said the term is “ambiguous loss”. Finally some words for this…

The unusual thing about the Tuberous Sclerosis Complex is that you don’t necessarily move in a straight line towards healing. Let’s say when your child is young he develops seizures, but you are in the miracle half that gets seizure control. But he still has massive delays from the seizures, so you are constantly mourning the loss of the typical child. You watch him struggle with a sensory disorder that not only isolates him, but your entire family. But you eventually find a way to make your life work. Then at age 10 he develops serious complications in his kidneys. If you have a daughter, by the time she is in her 20s she may have life threatening tumors in her lungs, literally threatening to steal the breath from her. You know she will suffer greatly. There is just so much uncertainty, and no linear path to follow with this diagnosis.

I have written about TSC before and called it a minefield. I still believe that is the best analogy for this disease. You never know when one of the affected areas will “go off” and there is little you can do to anticipate.

Discovering ambiguous loss helped me put a framework around this experience. In grief work, counselors are looking to help you find closure. You can’t get closure in the middle of the battle, when the war is still raging. There is no such thing as a cease fire.

The greatest gift of the Novartis experience was meeting other moms in the minefields with me. Their faces now fill my Facebook feed and their steadfast spirits comfort me in the dark nights of loss and fatigue. Thanks to Novartis, we can see each other now, across the fields, even though all our battles are nuanced. We are alone and together, simultaneously. They got it right with their promotional materials: TSC is a lifelong condition, but bravery is too.

TSC Booklet 

Blog Roll:

Thursday, March 17, 2016

#Sponsored (There's A First Time For Everything)

Novartis is flying me to New Jersey on Friday to a Tuberous Sclerosis Blogger Summit with 4 other mommy bloggers. Apparently this little blog has an identifiable impact in the TSC world---who knew? I’m not sure what to expect, but I have been instructed to use the hashtag #sponsored on all my posts. I even read in the paperwork that someone will be holding a sign with my name(!) when I get off the plane. I have always been secretly jealous of the fancy business people getting whisked out of the airport while we schlep around with Oliver’s wheelchair and glass jars of clinical trial medication.  

You know what though, I wish this was as cool as Jennifer Aniston’s gig with Aveeno. Do you think she gets free lotion for life? Can she take a bath in it if she wants? Can’t you imagine her squirting bottle after bottle of that stuff in her giant tub, while her chandelier is dimly lit, all under the spell of a custom piece of artwork?

OK, I digress, back to working mom who drives a minivan in a middle class world….

In all seriousness I can’t wait to meet the four other moms. For a little less than 24 hours we’ll be able to talk endlessly about subependymal nodules and angiofibromas. We can compare doctors at TSC clinics and genetic mutations. We won’t be judged for sharing EEG war stories or how we cope with all the unknowns of this complex disorder. When I am with moms of kids that are typically developing I can never talk about these things, not only because my friends can’t even pronounce this stuff, but it can be a real downer. Life threatening brain tumors isn’t exactly small talk…it kind of puts a damper on the mood if you know what I mean.

So on Friday night I’ll get to share a meal and then perhaps venture into the city with my new friends. Women who’ve walked through the minefield of TSC everyday. Saturday we’ll be educated by experts and then asked for our opinions, thoughts and experiences. I expect each mom will have a story as diverse as this incurable disease. After hearing their stories I’ll want to give them all a medal of honor for her sacrifices, her bravery, her patience and perseverance. This is not a path for the faint of heart or easily overwhelmed.

I’m honored to be counted one among these women and I haven’t even met them yet. I don’t have to meet them to know I’ll love them. This is our world. It is messy. We walk the minefield with caution. We share the maps we’ve drawn with each other to avoid explosions. In the process we’ll have wounds to be sure, scars on our bodies, and some sustained level of trauma from the state of crisis we frequently live in. But, despite all this we will carry on with that powerful force that is a mother’s unflinching heart of love. That deep sense that we’ll do anything to help our children live rich, full, joy filled lives.

And most importantly I am sure we’ll all agree on this…

we will give everything but up.

#iamtsc #sponsored

Thursday, February 11, 2016

The Hard Work of a Life of Gratitude

I walk into the elementary school with the flags flying out front and don’t even have to tell the receptionist why we are late again. I nod my head and she knows it was a seizure that stole our morning. After Oliver is checked in he goes off to his class and we are escorted to the physical therapy room to discuss his new wheelchair and leg braces. We have waited almost a year for the wheelchair to be approved by insurance.

Oliver has been toe walking for years and now we have to try braces, otherwise there will be a surgery that cuts the back of his heel to make sure his hips are not irreparably damaged. Our physical therapist shows us how to push his foot into the braces. He is often unwilling to comply with our prodding and I can’t blame him. I get the hang of it quickly and pull the tube sock over the lip of the brace that is right below his knee. His legs are pure muscle from hours of daily trampoline jumping and my middle aged arms are no longer an equal match for his strength.

I am struck by the ugliness of the shoes the braces fit into. They look like what an old woman at K&W Cafeteria, with a walker would be wearing. They are a far cry from his Chuck Taylors. I just keep thinking, there must be a more attractive option?! Almost in the same moment as thinking about their ugliness I immediately feel guilty for my vanity and ingratitude. Why can’t I just see the braces and shoes and feel grateful? In another country or century we probably would have already lost Oliver. Why can’t I see the shoe and thank God for it? The truth is, it is a fight to cultivate a heart of gratitude when you are watching your child squirm and fight. Gratitude is not so much a spring, but a deep well. You have to send the bucket down deep and pull it out.

Dig the well of gratitude in your heart and send a bucket down. Don’t be surprised when you have to struggle with the weight of it all to bring up the bucket. Living a life of gratitude is hard work.

Oliver is brought into the physical therapy room by his one-on-one aide worker, Ms. Kinnett. She is young and patient, with a face that looks constantly empathetic. You can tell her heart is soft and their is no hint of jadedness within her. As we are about to fit him for the new wheelchair we realize he needs a diaper change, which is now greatly complicated by the braces on his legs. The time has flown by as we discuss the many wheelchair components, the three years we have before we can get another one, and if this is the right thing for our wild child. I look at my watch and realize I am running late for a really important work event, The Inspiration Lab.

We lay Oliver down on the table to change him. Ms. Kinnet is holding a book and trying to charm him into submission. He is unwilling to lie there compliantly, so three adults are wrestling with a first grader, with large metal braces on his legs. I am trying not to rip my pantyhose or split my pencil skirt while Oliver is actively kicking us. I take Oliver’s pull-up off in order to get to his diaper. As soon as I rip the side Andrew we have to take the braces off, because his pants have to come off too. We all just look at each other. I want to scream “S---” at the top of my lungs, but I’m in an elementary school. The clock is ticking. As we are wrestling, Andrew says, “he doesn’t even have a poop.” We are all greatly relieved.

It is in these moments that I want to quit. I know I am not supposed to feel this way. I am supposed to tell you that I feel like a superhero. I want to yell out “ F-You Tuberous Sclerosis. I hate you.” I hate you for stealing my dream of a big family and ski vacations. I hate you for robbing me of Saturday morning soccer games and Christmas cookie baking for Santa. For stealing the Christmas plays at church and the conversations about Jesus that I longed to have with our sweet boy.

I let out a deep sigh and leave Andrew to wrap up the meeting and decisions. I say my goodbyes to the physical therapists, Ms. Kinnet, the two medical equipment sales reps and Andrew. I speed walk to sign out in the school office. I walk out of the school, take off my visitor sticker and walk into the cold February air. I really, really want to cry. My lip is trembling, but I just keep breathing in the biting air. I want to sob, but I have fixed my make-up for the event that is now happening in 90 minutes. Emotional control is one of the by products of living in a constant medical crisis. I am not sure if it is healthy, but it is helpful. I gain my composure.

As I drive to the event space I find that bucket in my mind. I know I have to force myself to drop it into the well. I have to draw up some gratitude and perspective.

Inspiration Lab 
I walk into the event space with the river sparkling outside of the windows. There is a flurry of activity as last minute details come together. 60 women will flood through the doors in a matter of minutes. I do a mic check, fiddle with the mini unicorns on the table and thank the amazing team that helped put this together. As I stand looking at the room I finally get the bucket in my hands. I survey the room and take a drink of gratitude. My life as a mom is not at all how I imagined it would be. My life as a business owner is not at all how I imagined. One has been an unexpected calling and a life passion, one harder than I could have imagined with plot twists at every turn, but the juxtaposition is why I am at this event, The Inspiration Lab. A place for women to have authentic and vulnerable conversations about our lives, our hopes, our dreams.

The truth is that even if you are in a wasteland of parched earth— if you have a well, you will survive.

If The Source of all good things created the water then you can trust it will never run dry. You may need help getting to the gratitude, the inspiration, the hope, but it is there. If you have eyes to see them, there are wells in every single desert of your life.

What is even better than finding a well that will never go dry is having friends at the well with you. When you are out of buckets, when your arms are too tired to pull up the weight of the good stuff, when you are parched for truth, you’ll lean over to that friend and they’ll dig deep with you.

Gratitude is not so much a spring, but a deep well. Start digging...

Saturday, December 19, 2015

Christmas Card Letter 2015

Christmas Cards are finally(!) in the mail. Here is this year's letter...

Dear Friends,

This year I bought a decorative sign for our house that reads, “Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in the quest of some rare and perfect tomorrow.” This year, Oliver’s daily seizures have continued and the physical demands of his medical care continue to increase. We have moved him into our master suite complete with a handicap shower, bought him his first car, which happens to be a handicap accessible minivan (stop being so jealous), and ordered all manner of medical equipment (most recently, braces for his legs to correct his toe walking). Despite his inability to speak, his smile communicates very clearly what he loves, and his blue eyes shine when he is experiencing joy. Especially with Oliver, the eyes really are the window to the soul. Sometimes in the midst of the struggle with Oliver’s health, we find ourselves dreaming of that “rare and perfect tomorrow”, and forget to enjoy the gift that is a gloriously average day.

This year, Andrew worked on more productions and helped scout for a movie that we hope will decide to come to NC in 2016. In his “free time” (wait, what is that?) he tried unsuccessfully to catch up on sleep, squeezed in the occasional tennis game, and ran all over creation shooting houses for sale. Stephanie continues to lead Lanier Property Group, and Mondays are still her favorite day of the week. She has enjoyed opportunities to speak this year about entrepreneurship, women in business, and company culture. We thank God for your support of our business throughout the past 3 ½ years…you’ve helped us “live the dream.” The dream always was for LPG to provide a flexible and financially stable way to take care of Ollie. What is remarkable is that our company family now has 28 children (3 on the way in 2016). It is amazing how a dream for one child can turn into a blessing for 27 more. *Unsolicited advice: If you have a dream,! The right kind of dreams create a factory of blessings for other people. Success that is shared is the sweetest of all rewards.

As you may know, our niece Haley has been living with us for the past 2 ½ years while attending college. She will graduate this December and move back home to Concord. Her presence in our life has been such a gift! This fall she surprised us by getting engaged to her boyfriend Austin (a young man we’ve adored for many years). They will be getting married in October, and we are looking forward to celebrating this big life moment with them.

Oliver has grown so tall and strong in 2015. He now has a very big indoor trampoline for his room to help with his strong need to constantly be in motion. He likes to jump for joy like it’s his job :-) Making him smile makes us incredibly happy, but can be a challenge; on certain “bad days”, it is hard to find ways to reach him. We continue to be amazed by Oliver’s 5 nurses, 5 therapists and 4 teachers. We also are very thankful to have our family members in town to help us share in Oliver’s life. In Ollie’s case it does not take a village, it takes a small, caring city :-)

I’ll leave you with a quote by Anne Lamott. Oh my God, what if you wake up some day, and you’re 65, or 75, and you never got your memoir or your novel written; or you didn’t go swimming in warm pools and oceans all those years because your thighs were jiggly and you had a nice big comfortable tummy; or you were just so strung out on perfectionism and people pleasing that you forgot to have a big juicy creative life of imagination and radical silliness and staring off into space when you were a kid? It’s going to break your heart. Don’t let this happen.”

We wish you a holiday season full of gloriously ordinary moments, radical silliness, and dreams that lead to a factory full of blessings. 

Love, Andrew, Stephanie & Oliver

Friday, November 27, 2015

The Holidays Are Hard

Weeping may remain for the night, but joy comes with the morning. Our prayer is that the words of the Psalmist are true for you this Christmas season. We know very intimately that sometimes one must fight for joy, it seems like this is especially true around the holidays. Not all of us have the gift of silent nights (ours are peppered with Ollie’s seizures) or chestnuts roasting on an open fire (children who are developmentally delayed rarely do well with open flames), but what we do have is real hope and real promises.

One of the hardest parts of the holidays for me is the grieving. I expect if you’ve lost someone you love or watched a dream die you also feel this sadness. Perhaps you longed to be a mother and feel the joy of giving life to another. Maybe you lost your mother recently and would give anything to hear her voice on the line. Perhaps you are single and wish for nothing more than a spouse to kiss your forehead and whisper “Merry Christmas”. Maybe you’d like to wake up without chronic pain...just for this one morning. We all have weeping in the night...

If you are anything like me you’ve been watching these adorable families in matching PJs and coordinated needle point stockings hung on a mantle. This is dangerous. Maybe you are more mature and have not felt jealous of their perceived holiday experience of perfection?  Meanwhile, I have a nativity with a sheep that has been cracked into two distinct pieces, a donkey without an ear on the right side and a missing baby Jesus. You know, it kind of defeats the purpose of having a nativity if it doesn't have Jesus. We keep thinking he’ll show up in a toy box or under the couch. The irony isn’t lost on see, Jesus has a way of showing up in all kinds of surprising places. Jesus doesn’t fit into boxes all that well anyway. In addition to my nativity problems, I have two tiny fake Christmas trees on an armoire 5 feet in the air to keep a big boy with very little impulse control away. I have a fire, but it doesn’t keep us warm, it can be found on the Netflix program called “Fireplace For Your Home.” I did actually search for matching Christmas jammies that would fit my handsome, 6’4” tall hubby with thighs the size of tree trunks... #epicfail. My guess is you have similar stories of modifying the holiday you envisioned for something real and actually enjoyable.

The real truth is that Oliver is the same joyful and happy boy he has always been, but I wouldn't be real if I didn’t mention how hard it has been on us that Oliver has totally lost his ability to speak and communicating is painfully limited to 3 or 4 signs and infrequent vocalizations. Andrew and I frequently dream of Oliver speaking and wake up to find it was a cruel trick. As we live through year five of seizures, meds, diaper changes, medical travel, etc., it would be real to say it is messy and we still grieve.

I’ve mostly made peace with mismatched pajamas, a nativity that looks like it lived through a vicious attack, and a fire that is only on TV. This year I decided I’m going to be honest with myself and everyone else...the holidays are just plain hard. I am training my eyes and heart to look for things unfiltered...hunting for what is real. Real love, real joy, real comfort, real hope, real friendships, real messy, real timeless. Join me?

Christmas Card Pic circa 2012

Monday, October 19, 2015

Thursday, October 1, 2015

Waking Up The Artist Inside

I have a friend who is an artist. She is struggling to create again. She feels like she lost part of herself in the shuffle towards middle age. She has the charm bracelet of mid-life: kids, mortgage, marriage, retirement account, tired body, minivan. She has a happy life, but she knows that part of her has slowly died. It wasn’t a bullet, it was a starvation of the artist within her.  

She tells me she is afraid that the art won’t rise up in her like it once did. She is a prisoner to fear, but at least she knows it.

I want to grab her thin shoulders and shake her back and forth. I want to yell, “what are you waiting for?” “You honestly think there will be a cabin in the woods for you to disappear to paint, to write…to create?”

“You know that charm bracelet of mid life means there will never be this long, uninterrupted days to fall into the deep creative vortex!”

We always make time for what matters. Always.

You know who needs you? The people who forgot that they cried at a symphony, because music unlocked a part of their soul they didn’t know existed.  The ones that couldn’t walk away from that painting in the museum, because they were captured by the story it told. The people who loved a book so much they read it dozens of times until they began to think like the author. We need you to help them find this part of themselves again.

In the end you really have an audience of One. Your Creator. He gave you these great gifts, this raw talent. He does not want you to waste it. Check out the parables if you want to know how God feels about people wasting what they have been given.

Is that too harsh for you? Am I calling you a waster? Yes, I am. And it’s true. Your thin excuses are a big waste.

I know you fear that you won’t be able to find your creative flow again...the good news is it is right in front of you. Take the first step. Go back to the place, physically or musically where you felt the movement in your soul. When your heart was engaged and your overactive mind finally, oh finally, lost all track of time.

You are a steward of the gifts you have been given, the artist inside that is longing to come to the world. You do not own your talent, you are the caretaker of it.

That person is still there. The artist is just begging to surface. We need to hear your voice, read your words, gaze upon the beauty you have created. We need you to get back to work. The whole world is watching and waiting...

Sunday, June 21, 2015

Dad Face, A Father's Day Post for Andrew

There is a worried look that Andrew has. I call it his “dad face” because I didn’t see it in the four years we were together; until he met Oliver.  In that room with fluorescent lights and a bloodstained floor I watched him change instantly. I had just given birth to our sweet boy with the bright blue eyes and round face bursting at the seams with love.

In his first few moments of life he made that classic baby cry, yet still had trouble breathing. I was able to hold him briefly, but after a quick assessment in the room he was taken to the NICU. I’ll never forget that look on Andrew’s face as he stood across the room: the dad face. He said, “I’m going with him”, and I said, “Of course!” I leaned back on the hospital bed with a halo of sweaty hair and the relief of the end of labor.

In less than an hour, Oliver and Andrew returned. Oliver was washed and wrapped in a sweet blanket. He was the most beautiful thing I had ever seen. I had longed to see his little face after all those months of feeling him grow in my belly, and especially in my heart.

We couldn’t have known that the hospital would become a place that Andrew’s “dad face” would keep showing up.

When Andrew and I met, I remember seeing his messy bachelor pad dotted with photos of his nieces and nephews. When he spoke of them, his face lit up and his eyes softened. He couldn’t wait to introduce me to them. Andrew has always had a kind heart...there is a gentleness to his spirit that I love.

I don’t remember the first time I saw Andrew hold a baby, but I do remember thinking how natural it seemed to me. His was so big with strong arms, and yet (unlike many men I dated) he was so comfortable cooing at the little face in front of him.

Watching Andrew become a father was like watching someone put on a pair of worn slippers. Easy, comfortable, natural, meant to be.

This Father’s Day I won’t be getting him a coffee mug that says “World’s Best Dad.” I do not think parenting is a competition. What Andrew is, is this: “World’s Best Dad for Oliver.” I believe that God gave Oliver a great gift in Andrew. He chose a man who would not be broken by the incredible challenges ahead of him, including one of life’s worst pains: watching a child suffer. God gave Oliver a man unafraid to work insanely long hours to provide for the cost of life-saving treatments. A man physically strong enough to lift the weight of sickness and suffering. A man with a spirit that has never turned into a bitter stone, although that temptation is real.

You see fatherhood isn’t always about baseball games and camping trips. Andrew’s fatherhood journey will likely miss those wonderful experiences.

Andrew’s fatherhood is marked by hospital rooms and intermittent seasons of communication with Oliver. It is a picture of a sacrificial love that is beautiful. We all want someone to love us that well.

For six and a half years, I have watched his love in action. Not just his words, but his behavior and choices. I have been utterly amazed at his perseverance and positive attitude.

So this Father’s day I am privileged to honor a man that deserves so much more than a blog post.

One of the most emotionally touching things I’ve ever watched is Andrew being a father to Oliver. I have every confidence that as Oliver grows, Andrew will be there with his “dad face.” Maybe he’ll be feeding Oliver dinner when he is twenty five, wiping his chin when the applesauce doesn’t quite make it. Perhaps I’ll see that face in a hospital room after a particularly difficult cluster of seizures...his large hands holding the face he loves so much. I don’t know what is ahead for Oliver or for us, but I do know Andrew will be there.

How blessed we are if we’ve had a daddy’s lap to climb into, a father’s kiss on the forehead, a man to walk us down the aisle, someone who never stopped making sacrifices to make sure we were our best selves. Indeed, one is lucky to have ever received the gaze of a worried “dad’s face” filled with love and a promise to always be there. No matter what.

Happy Father’s Day, Andrew. You’re incredible.

Friday, June 12, 2015

55 Lights, Reflections on Leadership North Carolina

Fall in North Carolina

It is an October afternoon, a Pumpkin Spice Latte is in my cupholder and a 90 lb pumpkin on the floor of the backseat of my minivan. I have just visited my dad and grandparents in Concord, NC, the land of rocking chairs on front porches and rusty tractors in backyards. I am on my way to Boone, NC for the Orientation Session of Leadership North Carolina. I  still can’t believe they let me in.

The colors are just beginning to turn across the mountains and my face widens with a smile as leaves fall all around my car...autumn’s version of confetti. As I pull into the hotel parking lot I hear my suitcase collide into the pumpkin on my floorboard. When the door slides open I have to laugh at the juxtaposition of the giant pumpkin and a suitcase stuffed with business suits and leopard print heels.

I arrive at the hotel early; classic Type-A behavior.

When it is time to go to the first session, I grab my blazer, brush my teeth and head out the door. I see another person in the parking lot that looks similarly anxious and overdressed for Boone, NC. She is in a teal blazer, beautiful long brown hair falling over her shoulders and a smile that could light up a room. I like her and I haven’t even met her. I decide to roll down my window and ask if she is part of the program.  She answers back cheerfully, “Yes, I’m Alison DeCinti.” I ask if she wants to hop into the minivan and ride with me. Little did I know I had just met a friend for life.

We get lost finding the parking deck on the campus of Appalachian State University. We have multiple GPS apps open at the same time and can’t stop laughing at how many times we’ve missed the imposing structure that was right in front of us. It is the first of many times we will get lost looking for a parking deck on a college campus.

We get out, follow the LNC signs and find our meeting space. The room is large, the carpet is patterned and the windows go from the floor to the ceiling. There is a circle full of chairs. One for each of the 55 class members. As my classmates come into the room I immediately begin assessing them even though I’m trying not to do it. I wonder who will become a close friend, who will be the leader among the leaders, who is going to make me laugh? Alison and I choose to sit beside each other, thankful to have found a friend so fast. It feels like the first day of summer camp, but with much older campers in suits.

As I shift in my seat, I notice a woman across the room named Kim. She walks in with a huge smile that radiates instant warmth and confidence. She has beautiful blue eyes, luminous with kindness. I couldn’t have known from that first meeting, that we would soon be sharing deeply personal conversations about loss and hope.

What happens next at Orientation is a Leadership NC secret, but let’s just say that it is an unforgettable experience.

As the first session unfolds I begin to see that this journey will be more than I expected. The combined intellect, warmth, accomplishments and passion in this room are mind boggling. I feel unworthy of the company I am keeping, but decide to savor this experience. I know this is lightning in a bottle.

Light attracts light

Spring 2015

It is a May evening in Raleigh, NC. We’ve left the Old House Chamber and our cars are holding giant framed diplomas from our Graduation Ceremony. We’ve all fought the traffic to drive to Chapel Hill and celebrate at The Crunkleton. The bow-tie wearing bartenders are busy mixing drinks and the sound of vigorous cocktail-shaking fills the air. The breeze is coming through the wide open windows and some of my favorite people in the world are gathered around in huge leather chairs. Over the sound of the drink making is the voice and piano playing of our “Most Talented” class member, John.

There are at least twenty of us in a circle once again, but this time there is no anxiety, only affection for one another. We joke about the “LNC lovefest”, but sitting in that room, that night it was a perceptible thing. We don’t just respect each other, we have grown to love each other on a very personal level. The 12 nights and 17  days that we’ve spent together over the past 8 months have created life long relationships. The sheer volume of time spent together fostered chances to be real and vulnerable with one another.

Pam, a class member famous to us for her clogging, walks over to John and requests “Rocky Top.” Of course he plays it and we’re all smiling because we get to see one more performance from Pam. In this group of leaders there are all kinds of unexpected talents...discovering them is not only fun, but inspiring. These 55, they live life to the fullest.

Somewhere between “Rocky Top” and a strong cocktail, Kim leans over and asks, “What was your favorite part of LNC?” I sit quietly, unsure of how to put it into words. I need more time to process this experience.

So Kim, I finally have your answer:
I gained 54 new friends in 8 months. Friends that evoke peerlessness. Men and women who are game changers in their fields of expertise, deeply committed to the success of our state, passionate about issues that have shaped their lives. I have come to know a  rare collection of individuals who see problems and then tackle them with intensity and tenacity until they are completed with excellence. They are people who create momentum.

What happens when lights get together? They gain strength from each other. When one is weak it simply gets near another light and not only gains its strength back, but burns so much brighter.

That was my favorite part. Becoming friends with these 54 lights, unafraid to stand in the darkest places, not for their own personal recognition, but for the betterment of all.

As we, Class XXII, move forward, my hope is that we’ll keep fanning into flame the light we see in one another. Shine brightly my friends, because you were made for this and our great state needs your light.

“Whatever you are physically...male or female, strong or weak, ill or healthy--all those things matter less than what your heart contains. If you have the soul of a warrior, you are a warrior. All those other things, they are the glass that contains the lamp, but you are the light inside.”

Photo Credits: The Indie Image/Rebecca Mills