Christmas Card Letter 2017

Photo by Amanda Holloman

12-7-17

Dear Friends,

I started this year off standing in Oliver’s hospital room on the 6th floor of the UNC Children’s hospital wearing a hat that said “Best Year Ever”, which under the circumstances was exceptionally hard to believe. Friends had brought the hat, some confetti cannons and sparkling grape juice to help us kick off a new year. It was quite the start to 2017. 

When we sent the Christmas Card last year we had no idea how sick Oliver really was. On Christmas Eve morning, the day after he turned 8 years old, he began walking into walls because he was so dehydrated. To make it worse, he had gone far too long without urinating. We thought we’d do a quick “pop in the ER” (who even says that?!?) before all the cousins and family arrived for Christmas. When we went to the ER, Oliver decided to intermittently stop breathing in front of the doctor in his exam, which was obviously terrifying and perplexing. Turns out if you don’t breathe normally you get a ticket right up to the Children's floor, which began his 4th hospitalization of the year. We were told Oliver would get an ambulance ride to Chapel Hill sometime on Christmas Day as the local team at our hospital found themselves out of ideas. It was time to call in the specialists (again). 

Since it was Christmas Eve, I ran home and got Oliver’s Christmas gifts, toiletries, and of course our Christmas PJs. I couldn’t forget our tacky, yet beautiful 4 foot hot pink Christmas tree from Big Lots, which I knew would look great in our room. I figured, “Why stop at the tree?”, and hauled all kinds of Christmas decor from our house, up the elevator and into our room. *Here is a little secret we learned last year. The spirit of Christmas, the wonder of it, was not diminished by our physical location. The love and hope of Christmas knows no bounds...hospital room or your home, you can make any place sparkle with love. 

Once in Chapel Hill it became clear to all of us that these recurrent hospitalizations and extreme bouts with pain weren’t just “stomach issues.” This constellation of symptoms was something much more serious and clearly life threatening. After days of tests and procedures (many of them painful, some requiring sedation), the team at UNC diagnosed Oliver with a secondary Mitochondrial Disorder. This was heartbreaking news. In short, this means that sometimes his system is so tired it is hard for him to breath, and his stomach does not always empty food properly. He is more fragile than we ever understood him to be. This diagnosis (at least partially) explained all of these odd symptoms we’d never seen before. It was also decided that Oliver needed a g-tube implanted to help with the dehydration, urinary, bowel and swallowing difficulties he had so quickly developed. That surgery went well and we were finally cleared to go home. 

On January 10th we left the hospital with a very weak and vulnerable child, tons of new medical supplies and levels of anxiety we had never before experienced. If you saw the photos online, you could see that Oliver was a severely skinny boy. He lost over 20% of his body weight during his hospitalization and looked shockingly gaunt. Andrew and I had no idea how we’d manage this new complexity of Oliver’s care. But we did. We survived it. As we say all the time, you grow a muscle for it. 

The biggest concern for Oliver this winter will be getting the flu or even the common cold. We met with a world renowned geneticist in May who cautioned us that the flu had the potential to be fatal for Oliver. This is due to another genetic mutation we hadn’t known about previously. This mutation relates to how his immune system works, and is why we have to be so careful about exposure to anyone who is sick. 

Of course you are wondering, how is Oliver now? Thankfully, his stomach pain is fairly well controlled. He is still obsessed with tractors/lawn mowers/golf carts (hence the photo on the front of the card). He still loves to rock back and forth to the beat of the music and is currently on a Coldplay and Imagine Dragons kick. He is not as active as he was physically in years past (hello Mitochondrial Disease), but when motivated can still run and frolic quite joyfully. He is now officially homeschooled (didn’t see that one coming) and gets academic support from wonderful tutors. He knows his numbers from 1-100, all his letters (and despite the fact he is non-verbal), his teachers tell us he is pre-reading! He is back up to a reasonable weight, and we often call him giraffe legs because he is so tall and lean. He enjoyed horseback riding for a season this summer and splashing with us in the YWCA pool. Every single day we make sure that Oliver’s life is filled with laughter, love and music. He is currently in a rather silly mood and we simply can’t get enough of hearing his laughter. He is cheered on and cared for by a large care team, many of whom have been devoted caregivers for him for years. They are family to us and a large reason why we have so much fun, even when doing the hard work of caregiving. I think that all of us feel like we are better, deeper, more compassionate people for knowing Oliver. When I was pregnant with Oliver, I prayed for him each night and I’d ask God to make him a strong leader. It has taken me all this time to see that in an unexpected way, Oliver is leading others. He is shaping the way people interact with the world and stretching them to see the complexity of the human experience. He is a strong leader in a frail body. This should be no surprise, because of course God knows that power is made perfect in weakness and that those that leave the biggest legacies often suffer a great deal.

Remember that “Best Year Ever” hat from New Years? For our real estate company it was certainly true! 2017 was our best year ever. On the back of the card are photos from our Ribbon Cutting event at our new office in May. As we move into year 5 of running our small business, we are so grateful for the support of our friends, family, clients and our team. Being business owners has allowed us the flexibility and resources to care for Oliver, and also created a way for our employees to do the same for their families. 

Assuming Oliver’s health cooperates, Andrew and I will take some time together and ring in New Year’s 2018 at Bald Head Island with some dear friends. God willing, no hospitals for this year’s ball drop. 

Colin Powell said that “optimism is a force multiplier” and we couldn’t agree more. We deeply appreciate your prayers, love, generosity and friendship. We simply could not have survived this challenging year alone. Turns out your hardest year can also be your most meaningful, even your best year ever. Merry Christmas and Happy New Year! May 2018 sparkle with love for you and your family, no matter where you find yourself. 

Love Always, 

Andrew, Steph & Oliver (9) 

Giving Thanks

As you can tell I am so behind with the blog, but better late than never. I post almost everyday about Ollie on Instagram Stories and a good deal on my Instagram in general. Here is the link if you want to follow along there: https://www.instagram.com/stephlanier/

These are a few photos from Thanksgiving with our friends out in Pender County, NC. I sure do love some wide open spaces...Oliver gets it honest.

Sure does help to have a big and tall Daddy to carry you around when your legs get tired 

Our sweet friends that we've walked through a lot of life with shared their Thanksgiving tradition with us. Oliver really loves being in the woods and REALLY loves a tractor. 

We call this "communing" and he will literally sit somewhere fascinated by one thing. It could be an animal, pine straw or a toy. We just follow where he leads and try to take the chance to slow our own selves down a bit. 

This just melts my heart...and look at how tall he is :-) 

Connection

Oliver’s autism means that sometimes it is hard for us to connect. We can be in the same room, but not really together. It is a challenging experience to articulate to be together, but apart. Sometimes (for days) it feels like he is locked away from me, but this weekend at the beach he was all there. His sweet smile, his engaged eyes, his gentle touch to my face (almost as if he hadn’t seen me in a long time) made this mama’s heart melt 💕 The connecting didn’t stop with people, he was enthralled with the ocean and sand like a kid who had never seen a wave crash. He experienced so much wonder and joy in those hours. To see the world through his eyes is...spellbinding. Connecting, really connecting, to other people and God’s creation is such a gift. Let us not take it for granted.

Halloween 2017

Our little farmer isn’t into candy or wearing his shoes, but he does LOVE (i.e. is obsessed with) the blow up witch lawn ornament down the block. So we spent our time staring at the witch. Like, forever. We just plopped down in an unknown neighbors yard and stared. It wasn’t exactly the Halloween I envisioned, but joyful nonetheless. Autism is such a puzzle and it is impossible to predict how any holiday will go. I am just thrilled he found a little taste of happiness on a night that isn’t the easiest for special kids.

Wartime Parent

I am reposting this from when I originally wrote it in July of 2016. We are deeply thankful that Ollie's seizures have stopped, but unfortunately we are still at war serious GI problems and still on the quest for pain control for him.

The rallying cry below, the pep talk for a weary wartime mama, still rings true today. I hope it will encourage you when you find yourself exhausted or alone in a battlefield you never asked for and yet you are determined to survive.

2017 

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 neatly manicured patio houses and young live oak trees. The light streams in on his contented face. He rocks back and forth in his carseat to a U2 song. 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.

Special Olympics 2016

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 is 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.

2016

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's 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 even one 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, how?

2016

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.

Christmas Card Photo 2015

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 so of course you feel overwhelmed. 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. For one day you might find yourself at the West Point of Wartime motherhood as a teacher. Your suffering will not be wasted, your lessons will not die on this battlefield.

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.

Grand Opening and Ribbon Cutting

Small business is so intertwined with family we can't imagine one without the other. It was such a blessing to have Oliver pop by for a brief visit during our grand opening, because we founded Lanier Property Group in part to be a blessing for him. We hoped LPG might provide for his eye-popping medical expenses, and (more importantly) would give us the flexibility to be with him when he needs us. As you can see, that day was a good one for our brave boy, and for a moment we didn't think about the labels and diagnoses. We were just a little family with a dream that (despite incredible challenges) has largely come true. We can't say thank you enough to both our work family and extended family for creating this company with us! Cheers to family, hard work and the dream of owning your own business ❤️🗝

Man Crush Monday

I am man crushing this Monday on this guy, that held together Oliver’s intense caregiving regimen while I spent time in Texas making our company better. You’ve never seen a more devoted father or husband. Everything in my life has not turned out as planned, but Andrew’s character and integrity and heart of service...well that is the stuff dreams are made of 💕 #mcm

October Balloons

In October of last year I wrangled three balloons to do this little photo shoot. Let’s be honest; most of the photos look like the balloons are strangling me. It really was absurd. And on that day I needed a laugh, because all month Oliver had been in and out of the hospital with terrible pain with no clear reason why. It was this mother’s worst nightmare.

BUT when our hundredth house closed at Lanier Property Group, I remember being so happy to have something to celebrate. A true milestone for our company.

As we head into Q4 this year, we are far more profitable than we have ever been, which has been a combination of hard work and God’s grace. I have worked hard to understand how to be a great steward of our resources. Five years in, this social worker is slowly but surely learning how to be a CEO.

This year (profits aside), I had been hoping we could do a repeat photo. 100 houses sold again, by mid-October. But here’s the truth: we won’t be at #100 until December. Yep. No balloons this October.

Selling real estate isn’t always ponies and rainbows. We don’t always crush our goals. In an industry obsessed with numbers, rankings and unapologetic self promotion, all we hear about are the big “wins” and million dollar this and that. You can start to feel like you are the only agent in America that isn’t crushing every.single.goal you set for yourself this year. I mean the market is SO hot, right?

Here is what I have learned in my short years in real estate...if we aren’t careful, the goals that once motivated us can crush us.

So, if you missed your goals this month, this year, or this day, take heart. I invite you to consider that there are other things you may like to measure alongside those sales metrics. A different set of numbers you should analyze. More important things to keep track of?

Have you laughed for 100 days this year? Have you given (or gotten) at least 100 sweet kisses...on the forehead, on the lips, on the top of your head? Have you had 100 cups of delicious coffee, keeping you going on those late nights and early mornings? Have you lovingly changed 100 diapers, or cheerfully answered 100 customer calls? Did you say grace at least 100 times, over one hundred meals? Have you taken 100, maybe 1,000 photos of your puppy or your squishy baby you waited years to hold? Have you read hundreds and hundreds of pages of books that inspired you, downright changed you? Perhaps, at least sometimes, we should measure things that transcend our Profit and Loss Statements, our monthly sales competitions, our cash flow, and our instagram likes. This is simple to understand, but not easy to do.

So here is an invitation: why don’t you grab some balloons and celebrate the things worth counting in your life. The things that really matter to you. Moments that you want to mark and savor. It turns out when we invest in counting life’s simplest pleasures, we feel lighter, buoyant...a great deal like a balloon. When our hearts are full of gratitude, we are able to dance in the harsh wind, no matter how unexpected it may be.

Here’s to an October filled with balloons…