Monday, September 26, 2016

Food is Love


Food is love. And real love is what we are most hungry for. Good food is like real love, it nourishes your soul and brings comfort few things bring. In a world of twinkies and cheez whiz sometimes you need a chunk of smoked gouda and a warm baguette. A tall glass of fresh squeezed orange juice in a world of concentrates that have been frozen for years.


I’ve become a depth seeker. I want people of substance in my life.


In the past two weeks I’ve gotten to taste love and emotional connection time after time. It has been a season of intense hardship with Oliver and life altering decisions about his care. It has felt like too much at almost every moment.


A few days after we returned from our adults-only vacation I walked in and saw a pile of stained shorts and the look on John's face, and knew it was time. John is one of our fantastic nurses and he is more patient than virtually anyone else we know, but he had hit a wall. The diaper changes, the stripping and smearing, the biting and scratching had taken its toll. Aggressive outbursts and frenetic activity wear out even the most loving of parents and caregivers.

John and Ollie at Special Olympics this year


Oliver is 7. He is in second grade. He hasn't even lost all of his teeth yet and we are trying to figure out how we can provide a 2-1 ratio for his care, 24/7 in our home. We are trying to find money trees that don't exist and convince ourselves this next level of care is sustainable. We are even beginning to consider out of home placement where a team of specialists can help him.


This is not the first time we have had to consider new levels of care, but two adults for every single waking hour is a new precedent. We thought this may happen when he was much older; a preteen with urges that do not match his cognitive awareness. A raging teenager who can’t control his impulses...but a second grader? It feels unnatural to be the parent of the child and somehow, despite doing extraordinary things, not be able to meet your child’s needs.


I have been bringing my makeup to work, so I can remake my face after I have fallen apart in the car. I’ve taken to hiding in my office with my face to the window, back to the door. I prefer my tears to fall in private. I have stopped putting mascara on my bottom lashes all together, because the tears are always at the ready in this season. The real mess in all of this isn’t my face-- it is my heart.


So we have been scrambling to have two adults for Oliver's care when he is not in school. Andrew is working out of town most of the time, adding on additional strain to this new level of care. Mind you, we already have 43 hours a week of nursing care and it is not nearly enough. We have been on a hiring frenzy trying to identify people who can help us find a kind of stability at our house again. We have now added 20-30 hours of care from people we are paying out of pocket and 5-10 more from family. 80+ hours of care a week for one deeply loved little boy. Astounding. This is extreme parenting. Wartime parenting.


A special needs expert who has followed Oliver for years said to me last week on the phone, "In my professional opinion Oliver is one of the highest need kids in this state." It took my breath away to hear her say that. Part of me wanted to weep and say "yes!, yes!" this is why we are struggling so much, but the other part of me felt my heart break into little pieces. Validation sometimes comes at a high cost.


So these past few weeks I have been incredibly thankful for real love, real food, real depth. People who have cared for us while we are trying to simply hold it together.


Where did I find comfort in the midst of this crisis?



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I am sitting in a classy conference room in Cary, NC enjoying the most delicious turkey sandwich I have ever eaten. It is on perfectly crisp toast and the homemade potato chips are just the perfect amount of salty. The sandwich is so good, so timely, so thoughtful I get a little lump in my throat. I know I can’t start crying, I have to lead an afternoon of presentations for a group of people that I have never met. But with each bite I feel the thoughtfulness of the giver, a mentor and friend. Norman anticipated this small, but real need in my life. Leaving my company meeting to come to his meant I didn’t have time for lunch. I had scarcely thought about it before he was on the phone, reading out a menu and ready to have whatever I wanted waiting for me. It was such a small thing, but it meant so much in the midst of the craziness with my personal life.





That evening, after my presentations, I met with another mentor and friend at one of my favorite spots in this state, The Umstead. The weather had a tiny hint of fall crispness as we sat outside overlooking the lake and enjoying a glass of wine. I spilled out all my questions and worries. My heart was so heavy. She asked about my afternoon of presentations and when I told her about the turkey sandwich my eyes filled with tears instantly. I don’t cry that often, I can be rather stoic and yet a turkey sandwich (of all things) had me falling to pieces. What is really sweet is that she instantly understood my emotion for two reasons: First, she is the CEO of a 60 person company so she understands the high cost of leadership and second, she has been graciously kicking cancer’s aggressive ass for the past year.


Natalie & I at The Umstead

Fast forward one week and it is time for my wine and whine group to gather. This is tiny group of mamas with very special children. Your kid has to be “special enough” to join our little club, as in at least 4 diagnoses and an IEP the size of a Harry Potter book. Sometimes you just need to find hardship-peers.


Somehow our newest member to wine and whine finds the time to bring in a cheese tray that looks like it was ripped off the cover of Gourmet magazine. There are all kinds of fancy cheeses, jellies, fruit, compotes and tiny little toasts. And much like the turkey sandwich it looked like love to me. The wine glasses were filled as we all leaned back in our chairs. The four of us around that kitchen table began to howl with laughter at the craziness of our lives. The brie was so creamy and soft, gently balanced on that tiny little toast and with every bite I felt the love she had put into that tray. I said, “this is the nicest thing anyone has brought my way all week.” It felt so decadent, so thoughtful, so perfect for the moment. No cheez whiz allowed.


And up until that moment it was true, that that gorgeous tray of goodness was the nicest thing anyone had done all week for me. But on Friday I got another surprise. My co-workers called me to see an unexpected delivery; In two large bags were tons of delicious sandwiches, many of which were turkey. My friend, Natalie, whom I had met at The Umstead a week earlier had sent them with a note that said:


“To Stephanie and her staff,
Sometimes a turkey sandwich can really mean so much.
Hope this makes you feel good today!
Lots of Love,
Natalie xoxo”





100% I cried and dang it, I had mascara on my bottom lashes. That is next level thoughtfulness. Extreme thoughtfulness. Love in action.



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Where will I find comfort in the coming weeks...


I’ll find it in a bite of the perfect turkey sandwich, in the creamiest brie on a piece of tiny toast, in a glass of Cabernet on a crisp afternoon, in the warmth of Chicken Parmesan delivered unexpectedly. In all these places the food was simply the physical manifestation of the warm glow of friendship, sincere affection and real love.


When our friends are hurting we want to make sweeping gestures, we want to ease their burden and I want to suggest that you can do that more easily by thinking small and then taking action.


A playlist. A book. A simple flower arrangement. A warm meal. A cup of coffee. A funny card. A turkey sandwich. A promise to follow-up and then really doing it. A gift card. A lunch date at your favorite spot.

It is true that tiny toast and brie can really help heal the hurt. It is true that someone who shows up to listen, not to give advice, can help you breath easier and leave feeling lighter.

Burdens are halved and joys are doubled when you spend time with people of substance. People who know the difference between cheez whiz and real food.

Thursday, July 21, 2016

Wartime Parent

It is 7:30 and he wants to go for a ride. He grabs his chewy tube once I get him into his enormous special needs car seat. He is looking out the window as we cruise through our neighborhood of cookie cutter houses and young live oak trees. The light streams in on his contented face. The radio is playing “I Still Haven’t Found What I’m Looking For”, and I feel content too. A Starbucks run with my boy on a summer morning is sweet.

Three minutes into the drive, out of the corner of my eye I see his head drop in the rearview mirror. I see his arms out stretched, shaking, rigid. I hear the gagging and then hear his breathing has already stopped. I rush through the light and pull quickly into an empty parking lot.

I open his door and immediately prop up his head. I try to get him into a position to increase airflow. He begins to drool. His eyes roll back in his head. He finally begins to gasp for air, and I do too. The worst is over. I sigh. I get the headrest in position to cup his head. His neck is like a wet noodle after a seizure of this magnitude. I look at him before I shut the van door; he always looks like an angel after the seizure short-circuits his brain. I pull my hair back and twist it into a knot. I try to relax my shoulders and take a deep breath.



All this only takes 2 minutes. It is an average morning for us. Me whispering, “Keep breathing, keep breathing, come back to me, come back to me...”

I keep the radio turned off. Silence has to be the best thing for his brain, now in a postictal phase. I know now that the hours of deep sleep will envelop him like a blanket. I wish after this repeated trauma I could also sleep that deeply for hours, but there is a company to run and a hospital trip to pack for.



Last night, I stayed up late reading a book, “Hope Heals”, about a woman’s incredible journey of hope and faith through a massive stroke that nearly killed her at the age of 26. It includes a photo of her from her wedding day. She was a model and actress, and in the photo she is running barefoot in her huge white dress. Joy just radiates out of this picture, even on the black and white page. Now she can’t run anymore, and her face no longer resembles one of a model. Her story is one of stunning loss and sadness, but also hope and real healing. Her husband love as a caregiver and cheerleader is stunning. Their story is beautiful and inspiring.

I am always struck by the books and stories of people who survived tragedies, but begin to move into the future. They begin to rebuild and move on; but our story feels so different. They work through the entire grief cycle; we can never seem to complete a single cycle. We have much more in common with the progressive diseases that are slow, that twist the body and sometimes even the mind for many years. Tuberous Sclerosis, a genetic disorder, has no remission or cure. Our friends with Muscular Dystrophy and Rett Syndrome know about the cruelty of regression even more than we do. These diseases steadily reverse and rob your child of skills and abilities they once had. They stop walking, stop eating, and eventually stop breathing. Cruel is an understatement.

I envy people who have been through “the worst of it”, and know they are on the other side. To be six years in and know for certain the worst is yet to come is a terrible reality. Nobody has that inscribed on a rock in their garden “the worst is yet to come”. It doesn’t make for a good Instagram post. For some of us it is the reality. How do you even deal with that? Honestly.

As soon as I type that I want to make it ok for you. I want to tell you I am ok. Don’t worry about me. I want to smooth over the story. I want to give it a “feel good” vibe. I want to rescue you from the brutality of it all, but I can not. The truth is subversive.




What can I tell you about a life when the worst is yet to come, in terms of medical diagnosis? It sucks. And you will want to run away. And you will feel more trapped than you have ever felt. You will look everywhere for an escape hatch. You will look at the wrinkles on your face, and the old videos of your once speaking and healthy child and want to stop feeling anything at all. You will numb yourself and distract yourself. You will find out what it means to live in a war zone. There is no cease fire and no peace time parades. You will be a wartime parent, not a peacetime parent. I take the analogy from the world of business, when Ben Horowitz explains the difference between the peacetime and wartime CEOs:

Peacetime CEO focuses on the big picture and empowers her people to make detailed decisions. Wartime CEO cares about a speck of dust on a gnat’s ass if it interferes with the prime directive. (Our prime directive is to keep our children alive, not much else really matters.)

Peacetime CEO spends time defining the culture. Wartime CEO lets the war define the culture. (The war defines your life. You deal with it. You adapt. You make battlefield decisions as best you can.)

Peacetime CEO always has a contingency plan. Wartime CEO knows that sometimes you gotta roll a hard six. (No contingency plans when your child stops breathing or their brain gets infected. You learn to weigh risk vs. benefits in a matter of seconds. You pull the trigger. You make the call, but you never forget the gravity of the situation...this ain’t Vegas.)  

Peacetime CEO sets big, hairy audacious goals. Wartime CEO is too busy fighting the enemy to read management books written by consultants who have never managed a fruit stand. (Always too busy fighting the enemy to take advice from well meaning people who have actually suffered no more than a headache.)

So that is the reality. I am a wartime mom. I roll a hard six sometimes. I use profanity on occasion, especially when bodily fluids and seizures dominate my day. I fight the enemy. I make real time decisions without the luxury of asking 10 people for advice, or praying about it for 2 days.



To my other wartime mamas, here is my advice. Think like a soldier. Think like a person going off to battle. Do not pity yourself.  Find your inner warrior. Do not make excuses. Make preparations. Get your head straight. You are in a war. You are not in a cupcake competition or running a 5K through your hometown. You are making life and death decisions that you are not properly trained to make. Make them anyway. God gave you this child and this war. You were called to this battlefield. Stop trying to figure out why you are here with bombs going off, while your friends are in another country sipping wine and getting more Botox. Fight your war. Focus. I promise you that if I get a break on my battlefield, I’ll try and run over to yours for a minute. I won’t have long, but I will be there. Do not let the brutality of this war change the tenderness underneath that warrior, sweet mama. Do not let the scars change you so much that you can no longer savor the sunrise or experience the joy that is set before you. The rest and joy you so long for may not come on this battlefield, but it will in the end. A peacetime will come for you, but for now your war wages on. So mama...you need to suit up. Put on your helmet, check your rations and pack your good attitude...this battlefield needs you.

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 sighs...uh-oh...now 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, go.after.it! 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