Monday, January 19, 2015

Kindness in a Cup


It is 11:00 PM and Andrew comes in from working on the set of “Sleepy Hollow”. He looks like a lumberjack in his layers upon layers of cold weather gear. We are finishing up packing for our one day trip to Boston for our doctor’s appointment. Our ambitious plan is to be gone from our house for 14 hours and take 4 plane rides in the same day. We’re old pros at this traveling show, and so we print out the “One Day Pack List” and check off each item. I long for the day when ½ of our backpack space won’t be filled with diapers and wipes. One day!


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At 11:30 we are finally asleep. Out of our slumber we hear a very loud crash above our bed (which happens to be Oliver’s bedroom floor), and realize he is having a seizure. We rush upstairs to comfort him, keep him safe and tuck him back in. At 11:36 we hear the loud crash again and the sound of him thrashing around his room. We tuck him in and stay for a few minutes this time. After another seizure we bring him into our bed to try to figure out what is happening. We try and get a video of the seizures that are happening every 5-7 minutes to show the neurologist. They are brief, but seizures nonetheless. Once they are over, Oliver goes right back to sleep. We doze off too, and every 5-7 minutes our bed soon becomes a sleep deprivation torture chamber.

After this continues for another 25 minutes or so, we decide to give Oliver his rescue medication; which should hopefully stop this cluster of seizures. This medication must be given with an anal syringe so that it can work fast. We give him the med, but the pattern continues unabated. His breathing is still steady, a good sign.

I pull up the Mass General Emergency Number and ask for the “Epilepsy Fellow on call” to be paged. Andrew and I are unsure if we can give Oliver another dose of his rescue medication. Diastat can cause respiratory suppression, and that can be very serious.

We keep falling asleep and bolting up. Asleep, awake.

After 45 minutes and no call back from the fellow we decide to give the second rescue med. It does not work.

The seizures continue. At this point it is 1:30 at night we aren’t sure what to do. If we call 911 or go to the ER we will be admitted and miss our flight to Boston tomorrow to see the very specialists we are so desperate for...our local hospital has not been super helpful in situations like this; we need our team. We are torn.

Andrew has the good idea that if we keep him awake it may help the seizures stop. Somehow these seizures are clearly linked to his sleep. We give him the iPad and he stays awake for 20 minutes, seizure free. As soon as he falls asleep he has a seizure again. It is 1:50 am and we are desperate for sleep. In one of his seizures did we see one of his old infantile spasms (the catastrophic kind of epilepsy)? We’re seeing at least 3 distinct kinds and maybe 4 different kinds of seizures. This is not good.

We decide that one of us will sleep on the couch while the other one stays in our bed with Oliver. Andrew hits the couch first, but by 3:00 I’m asking for help. I simply am not strong enough to contain Oliver when he gets the adrenaline rush on the thrashing type of seizures. He is so out of control in the middle of the seizure. I sleep until 5:00. Andrew says the frequency slows until at 4:30 Oliver finally stops seizing and sleeps. Andrew sleeps a grand total of 45 minutes.

In the morning Oliver seems OK, albeit tired. We are happy with our decision to go to Boston and get their opinion/advice. We pack an overnight bag just in case. The plane rides to Boston go well and Oliver is happy as a lark on his iPad during the flights.

The thing about being the parent of a medically fragile child is there are so many decisions and none of them are benign. If you do one thing it could do harm in another way. We envy parents whose biggest fear is giving too much Tylenol. No decision is without consequences with these kinds of medications and these kinds of outcomes.

When we get to the airport in Boston, Carolyn is waiting for us. Her smile is the most beautiful thing we’ve seen all day. We have 30 minutes before our appointment, so she says we should experience the “best hazelnut Latte in Boston” and we say that sounds amazing. We sit in her warm car, with a DVD playing for Oliver, and with a bag of snacks she has provided. It feels like the sweetest harbor in the midst of an insane 24 hours. Carolyn brings us the lattes, with foam hearts on the top. I think of how much kindness one can extend in such a simple way. That gesture, a beautiful and tasty latte, felt like a gift from God. It really did. In the midst of the darkest times, there is always light...if you have eyes to see it.

We saw it in the foam heart floating on top of the latte, and we felt it in Carolyn’s hug standing on the airport sidewalk.



At our appointment we go over lots of things, including a plan for what we should do should a night of seizures happen again. Armed with this knowledge (among lots of other things) we head back to Wilmington. On the tarmac for the 3rd flight of the day, Oliver falls asleep and the seizures start again. The flight attendant can see that we are struggling and comes by to check on us. Initially she is worried that perhaps Oliver shouldn’t be flying at all. We have a momentary panic. Should we get off the plane? Stay in Boston? We see her talking with her coworkers about us.

We quickly administer a dose of Vimpat (oral medication) and wait. The minutes tick by. Finally, all looks peaceful with Oliver.  We assure the flight attendant that we’ve made this trip many times, and under worse circumstances (unfortunately true).

When she comes around to ask if we want a beverage, we both say cranberry juice. She says, what about a REAL drink on the house? A beer or glass of wine? We say, “Oh you don’t have to do that”, but she insists. She says “I’d love to do this for you”.  

Twice in one day. There is kindness in a cup. 
Distilled into liquid comfort. 
It warms us from the inside out.

A simple human interaction that distracts from the battle against the seizures and the race against losing Oliver’s cognition.

I posted a photo on FB with this quote.



It sums up how I feel about all of this. Our future with Oliver is as parents and caregivers. There is every reason to think it will be harder, but we are also much stronger now. For we know that as much as we’ll have hard times ahead, we’ll also have unexpected cups of kindness lighting the darkness.

Tuesday, December 30, 2014

Make A Wish Trip to Disney World & Give Kids The World Village

Oliver looking out the window waiting for take off
Wow, were we ever ambitious...blog our way through our trip to Disney? We barely had a second to catch our breath. Blogging in a hospital is far easier, because you are stuck the whole time with so little to do...not so on this trip!

On the night we arrived in Orlando Oliver fell asleep. This cute Mickey was the first of many gifts he received from Give Kids The World Village.

Some of the characters come to Give Kids The World Village for special meet and greets.

Oliver tried to pull off Mickey's nose and gloves. Mickey was not upset, I think he has done this a time or two...

Andrew & Haley at Harry Potter World





Give Kids The World Village is just as special as we had heard. Every single person there is so nice it makes you feel a bit like you are living in a Disney movie.  There is a strong sense of community, with an overarching sense of whimsy. You feel deeply cared for...it is a place of celebration, despite all our kids have been through.


Our first morning we heard sleigh bells outside of our villa. We weren’t fast enough to peek out the window, but later found out a little girl named Candice had the wish of riding in a carriage pulled by a unicorn. She got her wish, and we got to meet her. What a cutie!


The Christmas Tree in our villa
One thing that made this place so special is they have thought of EVERYTHING! Everything is beautiful and handicapped accessible. Our villa came decorated for Christmas, including a full sized tree (which we don’t have at home). When we walked in on Sunday they had the fridge filled with starter snacks and the table covered with gifts for Oliver. Every day a gift fairy came and left a new gift for Oliver.

On top of an incredibly nice place to stay, the village had every food need covered. The round-the-clock Ice Cream Parlor, cafeteria style restaurant, take out pizza and another take out place provided by “Boston Market”. They deliver virtually everything to your door if you desire. When you eat at the Gingerbread House (cafeteria) you never have to carry your own tray, as there is an army of super friendly volunteers ready to assist. It is a sweet place, where you can even get some Krispy Kremes each morning. Brave kids and their families walk around and you wonder about their stories. There is power in being in a place where everyone is especially aware that tomorrow is not promised, and each day is a gift to be savored.

Ice Cream Palace at Give Kids The World


You won’t be surprised to know that Oliver loved the Magic Kingdom from start to finish! As soon as we walked in, we happened upon a street performance of singers and dancers. He pumped his fist and kicked his legs so hard we thought he was going to break his stroller. He also really loved the parades and the "Winnie-the-Pooh" ride.

We took advantage of the Wish Family Lounge twice after he had seizures. It is such a blessing to have a place to take a quiet rest in the middle of the bustling park. Incredible that Disney built this just for Make-a-Wish kids, and we are only slightly sad that we can never go back. 



The castle



One of our serious challenges in the first two days was keeping shoes on Oliver’s feet. I know we put them on over 40 times in 48 hours. It was driving us bonkers. So in true Stephanie fashion I ran into a Walmart and tried to find something better. I got one pair, but they didn’t work. Later that day I went to Super Target and bought 3 more pairs. No dice. I googled “Kid’s high-top Chuck Taylors”, which took us to a JC Penny across town. They did not have high tops. Epic Fail. FINALLY, we found the Chuck Taylors at Shoe Carnival. It took 8 pair of shoes and hours of time, but we finally got it right. Oh, the things we do for our children...


Oliver resting in the Wish Lounge 
Once we got the shoe debacle figured out, we were set for more days of fun and exploring. Other highlights for Oliver were:
Safari at the Animal Kingdom
Dancing Lights at Hollywood Studios
Horseback Riding at GKTW
Christmas Party (dancing w/ the Gingerbread Man) at GKTW
Dr.Seuss-Land at Islands of Adventure
Everest Roller Coaster at Animal Kingdom
Seven Dwarves & Barnstormer Roller Coaster at Magic Kingdom
Dumbo Ride


Horseback riding at Give Kids The World


It was an incredible trip that gave us a chance to experience joy and laughter as a family for an entire week. We saw so many light-bulbs go off with Oliver, which is a rare joy. It is something we’ll treasure for the rest of our lives.


We are so THANKFUL to Make-a-Wish of Eastern NC and Give Kids the World Village for their incredible generosity. We’ll continue to support both charities. It is impossible to adequately express our thanks to them for the very special work they do.

Thursday, December 25, 2014

Christmas Letter 2014

Dear Friends & Family, December 14, 2014

As you read this we’re in Disney World, making some magical memories on Oliver’s Make-A-Wish Trip. Six days of fun and laughter for a little boy who has endured so much in the past 4 ½ years. We can’t wait to see his dance of joy as he experiences the rides and characters. What a HUGE gift to have this week of good times; no needles, procedures or surgery rooms on this trip. Even though he can’t really talk, we get to see him pump his fists in the air with delight and do his little happy dance...what a joyful life moment!



Haley, our niece, who is still living with us is also with us in Disney.  She is happily enrolled in cosmetology school, so there is much talk in our home of all things hair and make-up. She adores Oliver, and it makes our hearts melt to watch them together. She shares the upstairs with our former housemate Stephanie Schneider, who has moved back with us in anticipation of her wedding in February. They help us in so many ways, and we love and appreciate having them sharing our very full house.

In April, Oliver got his long awaited first dose of CBD Oil, (the FDA Approved 100% legal medical marijuana for epilepsy). It totally stopped one kind of his seizures (Complex Partial) that had been interrupting his brain activity almost every minute. It has greatly enhanced his quality of life, and although it didn’t give him seizure freedom, it did give him back some desperately needed cognitive function. The trips to Boston (13 or so) but who’s counting (?!)...were grueling. We often did them with Oliver in less than 24 hours. Despite the difficulties, the exhaustion, and the expense, it has been worth it. We thank God that Oliver gets to be one of the first few kids in the world to try this medication.

This year Oliver also began kindergarten. He has an outstanding teacher and “one-on-one” aide who love him and keep him safe through the day, and excitedly report every little “inch-stone” of his progress. We thank God again for this transition being so smooth, knowing that many have not had that blessing.

In September we took 10 friends with us to Bald Head Island to celebrate our 10th wedding anniversary. We didn’t know when we said those vows all those years ago just how much we’d be tested, but we meant what we said... We’ve certainly made it through some dark places and came out better and stronger because of it.

Andrew continues to work in the film industry on “Under The Dome”, “Secrets & Lies” and “Sleepy Hollow”, as well as continuing photography and behind the scenes work with LPG.  

Stephanie continues to lead our real estate company, Lanier Property Group. We’ve had a really good year and she still claims Mondays are her favorite day. The best part has been sharing all this with our incredible team. We’ve loved meeting our new clients and spending time with our old ones, sharing in their big life moment of buying or selling real estate.

Finally, it really has been a time of breathtaking generosity for us both personally and professionally. We have had many mentors come into our lives, and their hard won wisdom is a priceless gift to us. Their generosity has been profound, for we can never truly repay them in kind. You know who you are, and we love you.

Christmas is all about a gift that also cannot be repaid. We pray that someone generous and wise will introduce you to worlds you didn’t know existed, will cheer for you when you feel exhausted, and will keep pointing you to the One who holds all things together.

With Love,          
Andrew, Steph, and Ollie  

Sunday, December 14, 2014

Disney World




In a few hours we're off to Disney World for Oliver's Make A Wish trip! We are going to try and blog our way through it. You should also check our Facebook Pages as well Andrew Lee Lanier & Stephanie Cline Lanier. Let the magic begin!


Oliver with his Wish Granters, Fran & Joe




Thursday, August 28, 2014

Oliver Goes to Kindergarten

I mix the waffle batter and sprinkle in some cinnamon. I check the waffle maker’s temperature and slowly pour in the mix. I hold back to see how far it will spread and add an additional drop to fill each little crevice. A perfect waffle for my sweet boy, his first day of Kindergarten.






He eats two waffles like he eats everything he likes; as if he were a desperate shark in a feeding frenzy. 

He wakes up happy.

Andrew gets Oliver’s medications ready. As Oliver finishes his breakfast, I talk to him about school. It feels like a one way conversation, but I carry on. He looks at me once after I say, “Don’t bite your friends”, and says “da-da-da-da” and jumps out of his seat. Perhaps he understood?

Morning snuggles with Papa

We load him into his 5 point car-seat in the mini-van and begin the drive. The traffic is terrible as we pass our districted elementary school across the street from our neighborhood. We can’t take Oliver there, because it isn’t the best fit for his special needs. I see the parents walking their kids to school and feel a small sting. I had wanted that for us.


We drive down the loop road and park in the grass. Oliver hops out, excited by the buses rushing past us. He walks on his toes towards the entrance; excitement is filling his body, even if the words don’t come.


We are greeted at the door by the assistant principal and a parent volunteer. We get our visitor stickers and sign in. There are only five names on our sign in sheet. Oliver's Exceptional Children’s class is small. Five boys, all Kindergarteners.


We walk to the end of the hall to the classroom. The door is decorated with a 3-D tree with each boy's name on it. It is Pinterest worthy. We are greeted by Oliver’s one-on-one worker, the teacher, and the teacher’s assistant. These three women will work with these 5 special boys all year. They are incredibly enthusiastic and have won our confidence.


Smiles in the parking lot

I think back to the IEP meeting we had last week. How I cried tears of joy when I got in my mini-van. I was just so happy and thankful. We have a "one-on-one" for Oliver. We didn’t have to fight or argue to get it. This is unheard of in the IEP world. They just had her waiting for us. The whole team welcomed us with open arms and took care of every concern. They were so professional, so ready, so willing. I left with a heart full of gratitude. For this very big step to be so easy; what an unexpected gift.


Andrew snaps a few more pictures of Oliver and his teacher. Oliver is reading a book and curious about his new environment. There is no hint of sadness or worry in him. After lingering a few moments, we give him quick kisses and walk out. He doesn’t notice us leaving; he is already enjoying this new adventure.


5 minutes in and he is in love with Ms. Pollock!

We pass a mother, buried in her husband’s arms sobbing. I don’t feel like sobbing. 

Andrew asks if I am going to cry. I say “no”; I’m just happy Oliver is still with us on this day. That we get to do this together, the three of us. That Oliver gets to go to this great school. I feel gratitude.


I ask Andrew if he is going to cry. He shakes his head “no” and grabs my hand. We walk out the door and into this new chapter called “Elementary School”.



Sunday, July 13, 2014

CBD Oil Legalized in NC for Epilepsy Treatment!

We're off to Boston again this week. Oliver will have a 24 hour EEG. It will be the first one since he began the clinical trial!


I love this picture from when Oliver was little 


Last week CBD Oil was made legal in NC! It was a great victory for our family and so many others. Many people have worked so hard on this issue for years and it is beautiful to see their efforts pay off. I have to thank my aunt Robin and my dad for their advocacy in the Concord, NC area. It was encouraging to see our legislators get something right. This time they did something that really matters.


FAQs about the CBD Oil:

Is the oil working for Oliver?
It is too early to say for sure due to the “Honeymoon Phase” that  often happens with seizure meds. We can say that Oliver’s tonic seizures are significantly reduced and his words are slowly coming back. He is much brighter and engaged than he has been in over a year and we are overjoyed. It almost feels like re-meeting him again.

Will this law change anything with your travel?
No, we are still in the clinical trial in Boston and still have to travel to get the med. There is a slight possibility it could change after the initial year, but that is very uncertain.

How will NC families access the oil?
We aren’t experts, but it appears there is still a decent amount of ground to cover on how it will work. It will be a card/voucher that is given with the supervision of a neurologists. Our understanding is the Department of Health and Human Services will administer the cards.

How can we help?
Now we need movement on the federal level. This article is a great resource and explains the federal issue quite well:
http://www.washingtonpost.com/blogs/local/wp/2014/06/19/fairfax-frederick-moms-lobby-feds-for-medical-marijuana-for-kids-with-epilepsy/

Sunday, June 15, 2014

Inchstones

The burgundy carpet and mauve walls are so classic Southern Baptist. The gold chandeliers hang in a neat row of three and the choir loft is left empty for today’s preschool graduation. There are ten little red chairs on the stage, each marked with a name taped to the back. The chairs wait in eager expectation for their very special little ones.

Some come down the aisle with a typical walk, as they are physically able. One comes with her long, curly, chestnut hair cascading down the side of her wheelchair. She is radiant in bubblegum pink. The others come with help, staggering and unsteady, holding the hand of a loving adult.

Walking is not a given in this class. This is a community of inchstones, not milestones.



The sanctuary is dotted with beaming parents. Parents that no longer are handed the developmental worksheets at the pediatrician’s office. As if they needed to be beat over the head again with all the things their special ones can’t do. Checkbox after checkbox of “not yet”. They don’t give those checklists to me anymore. We all know that those worksheets were made for the milestone mamas.  

They fill the stage with robes of bright red, dark purple, yellow, emerald green, white and our Oliver in Carolina Blue. They are a rainbow of five year old happy faces. We know Oliver will never wear the real Tarheel Blue, for we grieved the dream of college years ago. I’m caught up for a moment in what it might have been like to stand at The Well with him---a mother’s arms draped around her son. It was my dream and I have to let it go; right there on the fellowship hall floor as I untangle his tassel. It is a tiny death in the midst of a joyous day.


When their names are called they snatch up their diplomas with wild abandon. We hug teachers and gather our things. We leave the church with Oliver in his wheelchair, tired from the day’s festivities. We take off the Carolina blue gown before lifting him into his car seat. I realize he managed to break the entire zipper of the gown.


I get home and go through our bags. Rescue seizure med goes in the cabinet, dirty sippy cup goes in the sink. I pull out the blue gown and hold it in my hands. I think for one second about what to do with it. I do not hesitate. I ball it up and stuff it in the trashcan. Two halves, unable to be put back together.

I decide to keep the cap as a relic of this moment that we did not take for granted.

Despite being ripped in two, we are still whole in our deepest parts because today we give thanks to the One who entrusted us with this treasured, special one. Happy Graduation, precious Oliver!







Sunday, June 1, 2014

They Sound So Good

Waves of regret
Waves of joy
I reach out to the one I tried to destroy

The sound booms through my chest. I pulse my right knee in skinny jeans to the beat.

The other mothers jostle children on their hips. Their daddies hoist them onto their shoulders and sway left to right. The sun sets over the river and the battleship twinkles in the reflection of the calm water.

Oliver...?

Home with the nurse. His body wrecked by 7 seizures today. He has been asleep for hours.

Will we have more children? Today, I think no. December 25th and October 31st, I thought yes.

Holidays used to be my favorite, but the truth is I feel like they have been stolen from me. Pried out of my celebratory hands.

Tonight I watch someone else's tiny daughter twirl fearlessly to the music.

She moves in mysterious ways.

The spray of the glowing fountain sprinkles my face.

She moves in mysterious ways.

A daughter would have been a complicated gift, but oh how I would have loved her...

He leans over to me and says "they sound so good" and they do.

They sing...

And I miss you when you are not around. I am getting ready to leave ground. Oh you look so beautiful tonight. Oh you look so beautiful tonight.

Sunday, May 25, 2014

Kneeling Down

I kneel down beside the edge of the shower, water is pouring down. I swiftly tuck a piece of hair behind my ear and sigh. I begin to run the soap over his not-so-small body for the 3rd time this morning. I watch him lean against the wall and enjoy the warm water pouring down on him. He leans in to drink the water and I smile at his playfulness.

I aim the sprayer at the mess to wash it all away. I chase the foulness off of his back and legs and into the drain. He tries to stand and in the midst of keeping him safe, I get water all over me. And as the water drips off the tip of my nose, the tears start coming down.

I turn the water off and reach behind me for the fluffy white towel. We have few left that are clean. Our washer has never done so many loads, now that the messes won’t stop. Our hot water never so needed.

I help him to not slip as he steps out. He is unsteady, but eager. I try to snuggle him in the towel, just like my mama did, but he won’t let me. He has never been a snuggler. He has always been a fighter.

I place the towel on our bed, lay him down and double diaper his 5 ½ year old body, the tall, skinny body that now weighs over 50lbs. He is compliant this time, resigned to the fact that the 7th diaper change of the morning is becoming routine.

I zip him into his sleeper and tell him it is time for a rest.

He holds my hand as he wobbles up the steps. Obedient and willing to follow my direction this time. Like clockwork, his rhythmic grunting resumes as we approach his bedroom door. It has been so long since I have heard an actual word come out of his sweet mouth.

He crashes onto his bed and pulls up the covers. He giggles as I sing him “This Little Light of Mine.” He giggles when the light goes under the bush and even more when it comes out. He is enthralled for a brief minute.

I realize that I forgot what his giggle sounds like. For despite the messes I’ve cleaned and will continue to clean, that beautiful little soul is still able to find joy. To laugh out loud at his clown of a mother. To not let his circumstances define his experience of the world.

I come downstairs and find Andrew has just returned with a fresh bottle of carpet cleaner from the store. I re-read the cleaner directions, but I’m not sure why. I have done this dozens of times in the past month. I kneel down again, I tuck my hair behind my ear and I sigh.

I scrub hard in circular motions, careful not to breath in the noxious smell of the cleaner combined with the work of Oliver’s angry intestines.

And then the anger comes, red hot like lava erupting from the core.

I scrub, I blot, I scrub, I blot

And I say out loud to Andrew, “Where is my #%@^# glass slipper?”

He laughs out loud, and he says, “That’s the title of a chapter in your book.”