Sunday, October 29, 2017

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.


Monday, October 16, 2017

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

Monday, October 9, 2017

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…

Friday, June 16, 2017

The Ghost Has A Name...RANBP2


I wrote a blog post not that long ago about fighting a ghost...well, I think we found the ghost...and it has a name...RANBPD2. This came out of left field for us last week at our long awaited genetics appointment. This post is long and detailed and as much for my own processing as anything else.

Tuesday 6-13-17, was our appointment with Dr. Muge Calikoglu, a brilliant geneticist who has been able to diagnosis incredibly complex medical cases. She recited to us a brief medical history of Oliver, perhaps more thorough than anyone else ever has and then she launched into what she found in an analysis of 146 of Oliver's genes. Before she started, she asked if she could clear off the exam table so she could draw on the tissue type paper on top of it. Andrew and I leaned in as she explained Oliver's very complex genetic situation and honestly, much of it went over our heads. When everything was finished over an hour later I delicately folded up that tissue paper and put it in my purse. Sometimes it felt like she was speaking a foreign language as she plowed through research studies she had printed out for us and her theory of what all this meant for Oliver. To say we didn't see this coming would be an understatement.

She said Oliver does not have MNGIE and only has secondary Mitochondrial Disease, caused by other issues we’ll elaborate on. She emphatically said Oliver is not “dying right now from Mito”, but he is also more medically fragile than we previously knew...what bittersweet news.





The most significant revelation on Oliver's genetic test was found on three genes. People typically have 8-10 disease gene variants among their 22,000 or so genes. Oliver has three of “unknown significance” (which means his variation has never been seen before, so they can only theorize how they affect his health) on RANBP2. There are a few reasons this is important:

1- RANBP2 happens to be on the mTOR Pathway, very close to Tuberous Sclerosis (very interesting)
2- RANBP2 is a gene that helps control the pores in your cells (Here is a link to an article you can understand about how important your pores are). It also is involved in your energy maintenance and protein import and export.
3-  Oliver has one copy of RANBP2, if he had two, he’d be in much worse shape. The question is, how does having one variation interact with his TS diagnosis?
4- Dr. Muge has recommended that we keep Oliver out of school for flu season and/or when illness is more likely. She is concerned what happened this fall could happen again. She said something rather innocuous could “tip him over.”

The RANBP2 gene (when there are 2 copies) causes the brain to attack itself called Acute Necrotizing Encephalopathy. Her working theory is that some kind of infection triggered this one gene in Oliver, and that is why his body basically began shutting down this winter. This is a theory, but it does make some sense. It also would explain why his lactic acid was higher than expected, pointing towards some kind of infection. She told us that they don’t know everything yet about this gene, or how it interacts with the body. They do know that when triggered, it can cause cell and nerve destruction.

She reminded us that the million dollar question is, “If you carry this gene, plus have TS, does that combo explain everything?” It might. She doesn’t have enough evidence to be certain. When she looks at this gene in relation to known pathways, it sits right there as a susceptibility agent. But proving all this is next to impossible.

What does this mean moving forward? Practically speaking, we want to keep Oliver away from illness, especially the flu. Dr. Muge said the flu could be fatal if that faulty gene gets activated again. We will likely continue to keep him out of school in the fall, which is different than what we had thought before the appointment. The kids in Ollie’s class are adorable and great, but keeping germs to themselves is a bit unrealistic.
 
She also told us that the damage done by his near death experience this winter could have had some irreversible effects. She said we shouldn’t write off his “breath holding” (which is happening again) as just behavioral...she mentioned that the pons part of his brain could have sustained damage, and an EEG can’t pick up on all seizures (especially sub clinical ones). We are considering this and trying to keep more careful notes about the breath holding.

Since she thinks we are probably dealing with secondary mitochondrial impact we are going to try to minimize stress. She suggested we not try ABA therapy with him at this time, due to the stress and rigor involved with its implementation. She reminded us that years of seizures and the prolonged hospitalizations, time in the ICU, etc., has caused his little body to be very stressed. So we will keep trying to eliminate stressors and conserve his energy.

We are still having issues with pain management and his food regulation. On certain days he eats well by mouth, almost as if he is starving. On other days he wants to eat, but can’t swallow. These ongoing changes in his brain are possibly a combo of hormones, changes from TS and perhaps med interactions.

We talked at length about the changes we might expect during puberty, and had some hard conversations related to the level of caregiving he may require. She said puberty is downright brutal for most medically fragile kids. The flood of hormones to an already damaged brain can be another tipping point like the one we hit this winter. The average age of puberty for a white boy in the US is 9 years old. Oliver is 8.5 years old now. There is no way to predict when the hormone flood will start as every kid is different, but it isn’t as far away as we had hoped it would be.





Whew....if you read this far, I wish I could give you a big hug. It took me forever to write this post so I can only imagine how you felt trying to read through it. The struggle is real for those of us that find ourselves as mommy scholars.



“Our Father refreshes us on the journey with some pleasant inns, 
but will not encourage us to mistake them for home.” 





For any genetics folks out there who want the details:


RANBP2, Autosomal dominant, c.560 A>G, p.His187Arg (H187R), Variant of Unknown Significance

ETHE1, Autosomal recessive, c.184 G>A (NM_014297.3), p.Ala62Thr
GTPB3, Autosomal recessive, c.169 G>C (NM_133644.3) p.Ala57Pro

Wednesday, June 7, 2017

Oliver's Summer Progress





We haven't posted a medical update in a while, because things change so rapidly around here we'd be editing it non-stop. Oliver goes through phases in a matter of days. It is as if his ability to tap into the artistic or athletic areas of his brain come and go. One day he'll wake up with a little Picasso (thank God we are through the Poocaso phase) or little Michael Jordan and then poof, it is gone. His newest obsession is the swimming pool...so we'll see if we can hang onto that one for the summer.


In his artist phase

The awesome news is Oliver is doing well developmentally, drinking out of his sippy cup, enjoying sidewalk chalk, sometimes feeding himself, sometimes using the potty, most of the time sleeping through the night. He is still struggling significantly with his GI issues and his pain. There are often a string of days where his pain is controlled and he is more comfortable...but there are strings of very difficult days.

The seizures are still well controlled, but we have seen a handful of breakthrough ones in the past month or so. They are insignificant enough that we are not too worried. (I can't even believe I wrote that sentence)? Praise the Lord!


He L.O.V. E.S a joyride! 

His weight has gotten back over the 60lbs mark, but some days it is impossible (with the pain) to get him enough calories. The palliative care team at UNC reminds us to take it day by day. It appears that we are trending in the right direction, it has just been a slow process. We are also getting better at juggling feeding by mouth along with G-tube feedings, and how to use those in harmony with one another. When he is able to eat, he is still a big fan of cheeseburgers, pizza, cookies, cake and Cheetos...just like any 8 year old kid. Oh, and don't forget the Uncrustables, which he discovered while we were in the hospital...those are his favorite.


Loves his papa too 

We feel grateful we have avoided the hospital and have managed a very complicated level of care at home! We have times of deep connection with him, but Autism is always a part of our life. Oliver has been so medically sick that I have written very little about his Autism, but he certainly is on the spectrum. The lack of speaking and connecting sometimes make our heart break the most. My heart is both worn out from the sadness and rock solid strong all at once. My ability to compartmentalize and carry on in the midst of insane situations has grown and grown. I can clean up a hazmat level situation that would make most people run away, and then throw on a blazer to run and it is not even a big deal anymore. You gotta do what you gotta do! This is proof to me that we are all capable of so much more than we'd think. Motherhood draws out something almost super-human.


He went through a brief basketball phase over Spring Break

We continue to take each day as it comes. When we wake after an entire night of sleep we thank God. The sleep deprivation of last fall almost broke both of us. When we see those blue eyes light up and connect with us we savor it; those moments are pure magic. When we see him grab his sippy cup and drink water, we smile. These micro moments get us through the reality of daily caregiving.


When it isn't too hot outside he likes to play in the sand 

We don't know the long term prognosis of what is happening with his intestinal system. We have appointments this coming week at UNC and might know more...although it appears everyone is in uncharted territory with our sweet Ollie. On Tuesday we meet with a genetic expert, Dr. Muga, to get insight into the question of whether Oliver actually does or doesn't have a mitochondrial disease (and if he does) trying to figure out which one.



This swing at Hugh MacRae park is always a winner 

Through it all, thanks for being our cheerleaders and friends! You make us feel always loved and never alone.


And on a side note: I have neglected the blog for lots of reasons, but also in the midst of all this we moved our offices for Lanier Property Group. Who knew moving your office would be this much work? Whew, glad we're done with that. We'd absolutely love for you to pop in and say "Hi"...we are still in our beloved Midtown, but just a little further down at 3724 Shipyard Blvd.






If you want to follow along more closely with Ollie, I post almost everyday on my Instagram account. I feature our Ollie bear in quick little videos and photos on many of my Instagram Story posts so find me @stephlanier and say "hi"!







If you want to check out what Oliver has been up to this summer, watch these videos that his amazing teacher, Angela Pollock has been making of his progress and fun! Cheers to a summer filled with giggles, and pool day splashes and fun in the sun.  





View ALL of Ollie's videos at the link below...there is quite a library 😎




An Oliver Outing: June 5, 2016 from Oliver Lanier on Vimeo.


An Oliver Outing: June 2, 2017 from Oliver Lanier on Vimeo.


An Oliver Outing: May 24, 2017 from Oliver Lanier on Vimeo.


Oliver the Artist: May 8, 2017 from Oliver Lanier on Vimeo.

Oliver's Room Makeover

The Wilmington Central Rotary recently gave Oliver a room makeover, which has been a huge blessing to us. We've now been able to enjoy it for two months, and it has been AMAZING! The room is so calming and beautiful, and we spend more time than ever hanging out and enjoying the space.


Ollie's bedroom is our old master bedroom, as he was needing more and more space, and we realized we couldn't carry him up the stairs to his old bedroom for much longer. A few years ago we renovated the bathroom to install a handicap, zero-entry shower, but never got around  to doing much with his actual bedroom. All the hospital stays of the past year really threw us for a loop and redecorating his room was a luxury we just didn't have.

That’s where the amazing Rotary Club came in! They repainted, created custom window treatments, a cabana for reading and relaxing, added a sectional sofa with a pull-out bed for our nurses, a framed whiteboard for Oliver's Homebound Teachers, a new TV, new carpet and padding, new bedding and an incredibly custom closet built for holding all of his medical supplies. Wow! Their club descended on our house for two short days, sweated and worked so hard and left the place magical and beautiful.





Their incredible generosity has been humbling and life changing for our little family. Letting yourself be loved takes practice and humility. Andrew and I have gotten so much better at this over the years. When Oliver first got sick I never wanted to impose on others to bring food or help with laundry, but I have learned that it is their great joy to help. And as Oliver got more and more sick, it became abundantly clear that it was outside the scope of what we could do alone. Truly a village has helped to care for him. We have been stunned by the generosity of our church, the folks at Hope Community Church, the real estate industry as a whole and the Central Rotary.

A special thank you to Fred Krumpel, who has a heart the size of Texas and was patient with us through the design process. As you can imagine, Oliver's autism and sensory issues created all kinds of challenges. Fred was eager to think outside the box and create a space that was functional, safe and beautiful. We were deeply touched by the time and investment of his company, Strickland's Window Coverings.



I also have to quickly plug the carpet that Crystal Carpet and Flooring Company donated called SmartStrand by Mohawk. Due to Oliver's GI issues and medical challenges there are often big, hospital level messes created. So far this carpet has come completely clean when we use the steam cleaner as directed. It is a downright miracle! The carpet was actually tested out in a zoo(?!?) and came clean. Thank you to Fred and Chad at Crystal Carpet for bringing us such a functional and beautiful solution. Keeping the carpets clean has been one of my biggest challenges and now that little burden is gone. Poof! Now I want to get it put in the rest of my house!

Judy Coccoma, a dear friend and neighbor, custom made the window treatments and this super cool hanging cabana. Judy has been a part of Oliver's story for years now, gives meds on occasion and is always up for a neighborhood walk and a hug. She never ceases to amaze me with her sewing talents.

Our hope is to pay all of this forward someday. Thank you for loving us so well and PLEASE support these local businesses!
Wilmington Central Rotary
"Miracles of Rotary"

Vendor List:
Custom Colors
Crystal Carpet
Seams Inspired
Strickland's & "Strickland's Employees"
Kelley Winton (Carpet Installation)
Mill Outlet
Cape Fear Cleaning Solutions
Carole Sheffield
Mike and Amanda Baker