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

Wednesday, June 10, 2015

Our First Special Olympics

It is our first Special Olympics. The opening ceremony includes a parade down the track and field of UNCW. All the classes from the county schools are walking, pushing wheelchairs and holding homemade signs that say, “Parsley Elementary”, “Hoggard High School.” A marching band is playing music and the feeling is joyful and triumphant. The carolina blue sky is clear and the spring sun is warming everything.

I arrive late to the tail end of the opening ceremony. I have to search through the sea of people for Oliver. The red shirts and crush of people make him hard to find.

Oliver and his class at Special Olympics

The band keeps playing and it reminds me of high school football games. Hearing the drumline, I smile and am taken back to being 18, surrounded by a sea of black and gold in the stadium at Concord High School. Football is so deeply imprinted on my mind, such a sacred ritual in a small southern town. I remember how I loved climbing into the press box to pray before football games. Even then I was trying to point people to the One I love, yet struggle to trust, during these days of suffering.

When I finally get to Oliver, his body is like a piece of spaghetti in his borrowed wheelchair, a faded color of purple, worn out from years of use. The band has stopped and now music is pumping through the speakers, wafting over the track and field, a sea of red shirts and smiling faces fills my view. I take a deep breath and struggle to understand the emotions that rise and get caught up in my throat. The lump, the tingle of emotion that wants to spill out. The sadness that seems to be shuffling around in my heart. It is hard to contain.

My eyes are already bowls full of sadness.

When I think “Special Olympics”, I’ve always thought of the teenager beaming with pride and holding his medal. I never thought about my Oliver being least not as a participant.

I used to pray every night he’d be three things: a great big brother, a leader with a servant’s heart and that God would give him eyes to see people as He does. You know your life is changing when your prayers change. It may be the very first indicator that something deep inside is shifting.

Oliver and his one-on-one aide, Mrs. Henline

So here we are. Oliver’s first “event” —a short walk down the track. I pull my wet noodle of a son out of his chair. He is less than enthusiastic about the walk. As I steady him to stand, it dawns on me that we’re in a competitive situation for the first time. We’ve avoided Saturday morning soccer leagues,  so I’ve never felt this emotion before. It is strong. I like to win; Oliver hasn’t ever competed with anyone for anything other than a brain surgery slot.

I look to my left and to my right and realize we won’t win. Not only can Oliver no longer run, he can’t walk all that well today. It could be the seizures and it could be the meds. Who knows.

The bowls of sadness are filling up again.

I remember when he used to run everyday. He was like a lighting bolt through the backyard, the grass pushing into our bare feet as we chased one another.  I can hear his giggle even now, that dimple showing on his sweet face. I miss that, oh my how I miss that.

I stand there, trying to smile, waiting for the sign to “Go!”, but feel like my heart is cracking into pieces.

I don’t spend my days thinking about Oliver’s would be too hard. Mostly, I think about how to care for him, how to love him, how to communicate and break through to him. I don’t think about what he used to do. I don’t wallow in all the ways he has regressed. I don’t even let myself imagine what he would be like if he was typical. It hurts more deeply than anything has ever hurt in my entire life.  

Oddly enough, this whole experience of the Special Olympics has been hard, highlighting how much his health has declined. I expected a joyful day, not a wake-up call. Not the freight train of heartbreak that is barreling towards me.

As they lined up the other “walkers” he simply laid on the track. Disinterested, lethargic from the potent cocktail of meds in his small body. In his typical sensory-seeking way he licked the rubber material on the track. He just kept folding his body like a crumpled t-shirt onto the ground.

I kept saying in a cheerful, encouraging voice “use your legs, Oliver”...”stand up, sweetheart.”

Oliver and his teacher, Mrs. Pollock. Clearly he was not too interested in the competition. 

Oliver also participates in the softball throw, which consisted of me competing in the softball throw. I put the ball in his hand, but he wouldn’t let go. He kept trying to bite the softball, so finally I threw it for him (with his hand in my hand). It was not elegant, but it got the job done.

As I was walking to the tent from the softball throw, his teacher calls out,  “come get Oliver’s ribbon.” Turns out he got a ribbon for 5th place. I had to laugh. I actually laughed so hard I cried, those bowls of sadness finally spilling over. I’m 33 years old and despite competing with kindergarteners with special needs, I still placed 5th!

I leave the event early, unable to control the tidal wave of tears that are now coming. I am an emotional soup. We have a trip out to Boston tonight for another appointment for Oliver. It is a good excuse to leave. I push Oliver’s wheelchair across the field to my parking spot, the tears change from normal crying to heaving sobs. I remove my sunglasses to let the moisture and heat escape. Will there be an escape from this?

As I walk down the sidewalk I pass students going to class and it dawns on me that it has been 15 years since I walked these same sidewalks as a student.

At 18 you can’t know what is ahead of you.

By the time I got to my minivan the sobbing had turned into a few tears trickling down my cheek. I turned on a Spotify playlist meant to comfort and sat there, AC running hard against my face. I pull the handicap plaque off my dashboard. I look back at Ollie, tired and hot. His blonde hair and blue eyes shining. I love him so much I think my heart will come out of my chest.

I am so weary of watching him suffer.

I pull out of the parking spot and call the office. Work is the most satisfying distraction. There are deals that need to be negotiated and agents to encourage. There is an amazing administrative assistant holding it all together. There is a husband waiting at home for us to drive to the airport. He needs my tenderness and encouragement too.

Watching Oliver struggle, this hard, for this long has changed us. On August 1st it will be five years. We never imagined wheelchairs, Special Olympics ribbons, handicap plaques and seizures.

When I get home, I peel Oliver out of his car seat which is now much too small for his 65 lbs body. His adaptive car seat has been ordered. The new seat is huge, has a five point harness and will go up to 120 lbs. in weight...we just have to wait for the insurance to approve our request. That was 6 months ago.

I stick the baby blue “5th Place” ribbon in the file folder by the fridge. It falls out every once in a while when I am searching for our checkbook. I can’t bring myself to get rid of it, but I also can’t put it on the fridge. I shuffle it around just like I shuffle around all the sadness in my heart. It never goes away, it just moves around. Sometimes it is well hidden under the intense pace of my life. Other times the sadness spills into plain sight. Sometimes the bowl just overflows.

I know there is no need to hide the sadness. The depth of this sadness is evidence of the immensity of my love. Real love, sacrificial love that wants Oliver’s any cost. It is the kind of love that spares no expense, goes to any length to care for the other. The sadness will never break me, as long as the love is stronger. Love wins. That is a competition worth fighting. That is a ribbon worth keeping.