Sunday, March 29, 2015

Join Us! Easter Egg Hunt on April 4th!


Will you join us next Saturday for a FREE Easter Egg Hunt for kids of ALL abilities to support our dear friends at 


This event is free, but we'd love to have you RSVP



Wednesday, March 25, 2015

Purple Day for Epilpesy Awareness


Last year, I wrote about purple day and all the emotions I had as I sifted through the lavender, periwinkle and eggplant colored clothes. As I re-read it this year, I feel the same way.

Indeed, attitude is everything.



There is one difference this year. Purple Day happens on the same night as the Make-A-Wish fundraising event for Wine, Women & Shoes. Tomorrow night hundreds of women will crowd into a room for wine, shoes, shopping, a fashion show, and a chance to give their support for kids with life threatening illnesses.

Lanier Property Group (LPG) (our real estate company) is the wine glass sponsor of the event. Everyone will have a glass in their hand with Oliver's last name. It just seems fitting that we'd sponsor an organization that captured our hearts and gave joy to our sweet Oliver. In our company of a dozen people, three of us have immediate family members who were impacted by Make-A-Wish.

We take giving back very seriously at LPG.



Purple Day also happens to fall on LPG's 3rd Birthday.  The birth of some new dreams for us as a family. March 26th means so much to us.

Tomorrow, I know my heart will feel tender. I'll be reminded that our lives are mere vapors.




Purple Day. Make-A-Wish. 3rd Birthday.

All in the same day.

So join me in wearing purple tomorrow?

For in the end,
we all have uncertain futures,
but we also have the breathtaking possibility of
dreams
coming
true.



Thursday, February 19, 2015

Caging the Monster

We’re more than an hour late to our appointment and the traffic is bad in the tunnel. Our taxi driver’s minivan has plastic seat covers and a “Disney on Ice” performance at "The Garden" is causing gridlock near the hospital. Didn’t see that one coming. Oliver starts to have a cluster of seizures, broken up by fitful brief periods of dozing. I look over at Andrew, with Oliver draped over him. I say, “I don’t know if we’ll ever stop the seizures.”

So much snow...

The best metaphor I’ve come up with is one of a cage. With each drug, each surgery, and each diet, we try to put the seizure monster in his cage. With each new cage we get anywhere from 1-6 months of containment, but the monster figures out how to take over again. He rips the cage apart and begins to destroy once more.

We’ve fully maximized our current caging options. Since 2010 we’ve been through at least 90% of the treatment options for epilepsy. We can count on our hands what is left to try. In the whole world. It appears there is no “hail mary”.  

When we get into the exam room at the hospital we show our doctor two videos of the most recent cluster seizures. We explain how the rescue medication, Diastat, is no longer working, and the sense of terror we feel knowing one of our kid’s life-lines no longer seems to work.

She spins in her chair to her computer and pulls up Oliver’s latest MRI. She looks at it. Looks at me. Looks at it and then stares at me for 30 seconds. I don’t say anything and she doesn’t either. I know the wheels are turning in her brain. The video we showed sparked a connection for her.

She is thinking that a calcified tuber in Oliver’s left frontal lobe may be a hotspot for many of his seizures (especially the kind in the video).

She says that another brain surgery could possibly be an option. We are not upset to hear her say this; we are relieved that there are still things to try. I tell her that I’ve almost lost hope four and a half years into fighting the monster. How we’ve put so much hope in each cage we build. Each one does not hold the seizures. If I’m really honest, sometimes I feel like the seizures rule our entire life. That they have made me much more of a caregiver than a mother...that breaks my heart.

Oliver has his own kind of Ash Wednesday cross


I know that we can’t kill the seizure monster. If I could I would strangle him with my bare hands and rip out his heart. I would be barbaric in my dealing with this awful diagnosis. I would have no mercy. But all this anger is so misplaced; it is a disease and there is no way to kill it.

So here we are. Unexpectedly spending the night in Boston, Oliver’s head covered in electrodes. Thankful for a private room, pizza delivery and an incredible care team. Andrew has already drank 7 cans of the tiny ginger ales. He likes hospital snacks.

We don’t know if another surgery will be the cage we’ve been looking for. We don’t want to see the inside of another operating room full of barbaric tools for opening skulls. We are not anxious to go through the waiver forms again and be told how badly brain surgery can go wrong. Once is enough for any caregiver, too much for any mother and father.

The thing about being the parent of a medically fragile child is that your choices are never simple. How do you choose to make the least worst choice among many bad ones? There are no benign choices, because every one you make comes with a waterfall of side effects, interactions, and consequences.

It weighs heavy on us. Being the protector and decision maker for someone who is helpless to speak for himself.

I want to one day live in a place where no cages are needed.

It takes a team to hold Oliver down for the electrode application


Today is Ash Wednesday. The hospital is filled with people with crosses on their foreheads, including all of our nurses. Looking at them I am reminded of our frailty.

I am reminded of how little is within our control. I am reminded that there are seasons of mourning and contemplation, and seasons of celebration and joy.

I didn’t get to attend the service at my church. Tonight no one will dip their thumb into a bowl of ashes and put it on my forehead. But, tonight I don’t need an outward sign, for the inside of me has been burnt and scorched. My faith has been tested in a real and raging fire.

Tonight sitting in the dim light of this hospital room, my comfort is that He will make

messes into miracles

ashes into beauty

and one day there will be no more cages 
and no more monsters

instead there will be true freedom, 
redeemed bodies and 
a wedding feast that has been planned since the dawn of time

Saturday, February 14, 2015

A Valentine's Day Wedding Letter

From the first time I met you, I was amazed by your maturity. Even at 18 you were wise beyond your years. I can see you in full “skit character gear” for a Young Life club, including roller skates and your thin legs in hot pink lycra tights. You were funny, you were silly, and you had an awesome name. Our friendship grew as you babysat Oliver and came to our home. I asked you to join me on a trip to Boston for Oliver’s medical care. It was your first plane ride, your first big city, and your first solo taxi ride. You rocked that trip. You were a steady help and a constant encourager. You saw the inside our world of having a medically fragile child, a world we don’t share with many people. ”Double Steph” took on Boston, and together and we came home with an enduring friendship.

Boston Trip 

Fast forward to today and you have lived with us twice now. We’ve been able to share in your oatmeal obsession and dry cereal eating habits. We’ve watched you sit at our table early in the morning reading the Bible and balancing your checkbook by hand. You are old school like that. We’ve seen your servant’s heart in preparing meals for us and cleaning our house. We’ve LOVED watching you turn into a stellar teacher, spending your life pouring into the lives of Wilmington's most under-served children. You are doing work that matters, and it is inspiring. You have a beautiful, tender heart.  I hope you always remember that He rejoices over you with singing, today and always. You are His beloved daughter. Your beauty and generosity are gifts from Him...use them well.

When I set you up with Jens I had no expectation of marriage. I thought he was a handsome Marine who attended church each week, and had a bible that looked like it had been read. I heard he flew helicopters, which seemed pretty awesome. I figured that was a good start. When he took you on the sunset plane ride on date three, I knew you’d marry him (and I think you did too!). God has given you two a beautiful love story, and it is just the beginning.  The impact that you two will have on the world is something I can’t wait to witness.



So here is my advice/challenge for you on your marriage day:

Use your home to bless other people. Use the gift (that you both have) of hospitality to be a soft landing place for those you know. Have college kids over, invite military families, and linger over dinner with friends. It doesn’t have to be perfect; in fact, perfect makes other people nervous. Your home is not a status symbol or a thing to be shown off. It is a tool God has given you to bless others. When you are about to host someone, be thinking, “How can I bless them? How can I encourage them?” Let your posture be one of service, not trying to impress. Since you can be a perfectionist, this will be hard. Remember that “comparison is the thief of joy”. Your things (one of which is your home) are a tool that can be of eternal value. Hold all those things loosely and use them with intention.
 
Marriage is the repeated exercise of forgiveness. The stakes are high, because you’ve made a commitment forever. Do not let areas of hurt and anger fester...creating bitterness. Bitterness is an aggressive vine that can suffocate things that were once beautiful. When you are having trouble forgiving, the cross is always the answer. Look at how much you have been forgiven and how much you have fallen short, and it will soften your heart. The cross is the ultimate perspective giving place. Return to it as many times as it takes. In fact, the cross is the answer to virtually anything.

Finally, we are going to miss you so much. Your presence in our home has been such a life giving, joyful experience. We’ve loved watching our dining room become your shipping station for wedding gifts. It has blessed me more than you can know. We are so excited for the love and adventure that is ahead of you. Anywhere you go, you know you always have a home wherever we are. You are family. We’ll always love you, admire you, and cheer for you. Most of all, we promise to keep pointing you to Jesus, who is the true manifestation of love.

Happy Wedding Day,

Steph, Andrew & Ollie

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!


Add caption

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”.