Christmas Card Letter 2013

Dearest Friends & Family,

We hope this letter finds you happy and healthy.

In 2013 our sweet Oliver has grown so much. He is taller, stronger and turned into a human jumping bean. His favorite activity is to watch “Cars” and jump on his mini trampoline, which has taken the place of our coffee table. Picture an extra bouncy “Lord of the Dance”, and you get the idea. :-)

We hope you’ll keep praying for him and for us. Sometimes it feels as though we’re running a marathon, with a finish line that keeps moving. Developmentally, Oliver is still around a 2 year old level in language and skills, suffering from daily seizures (2-6). This means we still dress, feed, bathe and diaper him despite his strength and sixty pound body. We long for him to ask us a question (any question!). We long for his brain to have the gift of seizure freedom. We continue to give thanks for the amazing team of nurses, teachers, therapists, and family who help us care for him everyday.

It is an answer to prayer to say that Oliver has been selected for an FDA approved (fully legal) clinical trial of Cannabis, starting in February in Boston. We’ll be required to travel frequently to remain in the trial (likely 14+ trips to Mass General!). If the new medication (the 20th one he’s tried) doesn’t work, we will begin the process of preparing for a 2nd brain surgery in the latter part of 2014. If you haven’t read or seen how effective Cannabis (the CBD part of the plant, not the THC) can be for epilepsy, we’d love for you to google it. The amazing thing about this treatment is (unlike our current meds) it is NOT psychoactive in it’s effects, despite being derived from Cannabis. We can’t tell you how we are counting down the days until we can give Oliver his first dose. You can follow along on our journey with him via our blog: lanierlanding.blogspot.com

You probably noticed our beautiful niece on our card. Haley is attending Cape Fear Community College and living with us. She’s made us a family of four (at least for a while), and we couldn’t be more overjoyed to share in her life. Our house is regularly filled with college students (either her friends or our nurses) that attend UNCW or CFCC. It is truly a fun place around here, and perhaps a tiny taste of what having a daughter would have been like...

It would be hard to talk about 2013 and not mention our thankfulness for the growth of our real estate company, Lanier Property Group. We thank God for this year full of blessings, new team members (6 of us), old & new clients and new opportunities. For those of you who have sent us referrals or chosen us to be your Realtors, we are extremely grateful and honored!

As we approach Christmas, we’ll have moved our advent candle each day towards the last spot. We look forward to celebrating the birth of the Christ child who gives us hope when the future is uncertain. At the end of our Christmas countdown, you’ll find deep faith, eternal hope, and confetti cannons full of love. We wish you the same!

Merry Christmas,
Andrew, Stephanie & Oliver

Richer, fuller be

Rocky woke up around 5AM and was uncomfortable. We removed the catheter and hope we won't have to replace it. He also got another dose of morphine and some Benadryl to help with the itching. He watched an episode of Yo Gabba Gabba. He even tried to do a little dance when the opening song came on. Precious little thing!

I got 5 hours of sleep so I feel like a new woman. Andrew is in the sleep room and hopefully will emerge well rested. It feels like having a newborn. If you have a kid you know this kind of sleep deprivation. It can feel like torture and yet, you make it :)

Oliver has had one seizure this morning and something that looked like one. We look forward to hearing from neurology about where these seizures are coming from and what this all might mean.

At this point it looks like surgery is going to be Monday or Tuesday (most likely Tuesday).

A sweet friend of mine, Michelle Poulos, reminded me of this hymn that we sing at CCC and I love. My favorite line is “that morn shall tearless be”---good way to start this morning!

This first two photos are from last night at 11 PM 

 This morning at 7 AM. The eye looks even worse which is to be expected. Looks painful, right? 

Love That Will Not Let Me Go

O Love that wilt not let me go,
I rest my weary soul in thee;
I give thee back the life I owe,
That in thine ocean depths its flow
May richer, fuller be.

O light that foll’west all my way,
I yield my flick’ring torch to thee;
My heart restores its borrowed ray,
That in thy sunshine’s blaze its day
May brighter, fairer be.

O Joy that seekest me through pain,
I cannot close my heart to thee;
I trace the rainbow through the rain,
And feel the promise is not vain,
That morn shall tearless be.

O Cross that liftest up my head,
I dare not ask to fly from thee;
I lay in dust life’s glory dead,
And from the ground there blossoms red
Life that shall endless be.

The Glow of Gratitude

Fanny Crosby (writer of over 800 hymns including “Blessed Assurance”) said this...

"It seemed intended by the blessed providence of God that I should be blind all my life, and I thank him for the dispensation. If perfect earthly sight were offered me tomorrow I would not accept it. I might not have sung hymns to the praise of God if I had been distracted by the beautiful and interesting things about me."
If I had a choice, I would still choose to remain blind...for when I die, the first face I will ever see will be the face of my blessed Saviour." 


You see Fanny saw limitations differently than other people
and her gift of extraordinary sight---into the things of God---permeated her whole life.

Her blindness (providentially) made her see what was hidden to others.

What she knew, and what I have lived is this--
Suffering isn't wasted in the hands of the Almighty.

Suffering serves a great purpose. It transforms. It is the inevitable fork in the road of life.

The suffering may be unrelenting and inescapable. Let's suppose you cannot stop it. What can you do?
You begin with the end in mind. You decide how you will let it shape you.


Do you want let that bitterness strangle and coil its angry tentacles around your heart? Do you want to poison your relationships?

Or

Do you want to choose to let the suffering stretch your heart into a deep well of compassion and humility? Will you allow the pain to give birth to creativity (even a holy calling?) that was once buried deep?


Exchange the corrosion of bitterness for the

glow of gratitude. 

Bone Flap

Mamas dream lots of things for their babies when they hold them in their arms. Fresh from God, possibilities as endless as the stars. They dream of little league uniforms, insecure smiles in prom pictures, those cute homemade Mother's Day cards, diplomas framed on walls, soccer MVP awards...

One thing mamas don't dream about for their babies....a bone flap.

It is a little door to the brain that can be opened by loosening just a few screws.

One week from today, we'll arrive at Mass General Hospital at 5:45 AM. After a time of earnest prayer and not enough hugs and kisses, we'll walk away from Oliver and the process will begin...

Oliver's golden locks will fall on a sterile floor, bright surgical lights beating down.

The surgeon will use her knife to cut the skin on his head. Lay the flesh open.

She will then use a drill to saw through Oliver's skull and make the little door to the brain, the bone flap.

The circle of bone will then be removed to expose the brain.

(Are you freaking out yet? Because I am)

Now that the brain is exposed she will sew in the electrodes. Think: embroidering a pillow except it is Oliver's brain.

We will wait as the saw will be fired up and blood will cover her small latex gloves. The saw will cut through his skull and still...we will wait.

While we wait we bend the knee. We'll be with the only One who knows how all this will turn out. And our souls will be encouraged knowing you are praying with us too. From all over the world, our prayers joined together will rise like a fragrant offering.

Then she will then close the door to his brain.

Then she'll wipe the blood of his face and around his incision site. Maybe she'll even be taken aback by how cute he is...even with a bone flap.

She'll tell someone in the Operating Room to page us.

We'll meet her in a room that smells like Lysol and has seen thousands of boxes of tissues.

Then we'll get to see him. Our son.

A child who has had an extraordinary life....already...at two and a half.

A child who has an army of people loving and praying for him on this
life
altering
day.

Oliver having a blast this weekend at the Mates family farm. This kid loves a tractor! 

August 15th
Please pray that Oliver's bone flap would heal properly after the surgery and that area would not experience any type of infection. Also for his recovery once we are home. I am told from other mamas that have been through this that kids are often put on “safe/restricted play.” Can you imagine how stressful that will be with wild thing?

August 16th
Please pray for the child that is in this surgery slot. It was the one we initially wanted. I had a major revelation about that which you can read about on this post. 

August 17th 
Please pray for the nurses that we will interact with during our time at Mass General. Pray we'd be able to be a blessing to them and special bonds would form.

Prayer Chain for Oliver

This is from my friend, Anne Mathew. After many hours (!) working on the email chain we decided to post here. Please email her if you are interested! Thanks so much for loving us during this time! We leave one week from today...wow...

Brushing teeth at the Children's Museum

Spinning the Wheel at the Children's Museum

Hi everybody!
     I was thinking about how much we all want Oliver's surgery to be a cure for his seizures. I thought it would be great if we could join Andrew and Stephanie in praying for Oliver throughout his surgery. A prayer chain!
     Let me know if you want to participate and I will assign you a 15 minute slot to pray. There will be up to two surgeries. The first will take place from about 8 -12 the morning of Aug 23. At that time they will sew an EEG reader onto Oliver's brain. The readings from this EEG will determine what area of his brain the seizures are coming from. This will determine if he is a candidate for a second surgery, when they would remove the brain tissue that is generating the seizures. The date of the second surgery cannot be determined until some time after the first.
     Here is what I propose. Let me know if you would like to pray during the first surgery (aug 23) or the second (date unknown) I will assign you a number for your day. On the day of the surgery (and the day before for the second one) I'll send out an email telling you when the surgery starts. Take your number and calculate when you should pray. Each person prays for 15 minutes, and we have the entire time of the surgery covered.      If you are number 1 for the 8am surgery, you pray from 8-8:15. If you are number 3, you pray from 8:30-8:45. If you are number ten, you pray from 10:15 til 10:30. That's it!                                                                      
     If you know anyone else who would like to participate, you can forward this letter to them.   If you want to be a part of this, please email me at annemathew@bellsouth.net and let me know which surgery you want to pray during.
     Thanks! Anne Mathew

Barbie Doll

It's the last night of the conference. I sit beside her at the dinner table. I immediately think
she is a living Barbie Doll.

Jealousy whispers. It begins to coo at me to indulge in competition. Pit myself against her before I have even heard
her
name.

So I slap it down, that sin that so easily entangles. Comparison.

And, for me, comparison always leads to jealousy. Always.

You know why this happens to me? Because I can't compare myself with her without either becoming jealous or hating myself.

It is impossible for me to compare and end up more holy. Which is why my mind is a continual whack-a-mole at this conference.

I pound those comparison thoughts down all day long.

The incessant pull, the desire to make much of myself and little of Him is down-right inflamed at an event that is...for Him.


I think of this CS Lewis quote from The Four Loves...

“For every soul, seeing Him in her own way, doubtless communicates that unique vision with all the rest. That, says an old author is why the Seraphim in Isaiah's vision are crying “Holy, Holy, Holy” to one another. The more we share the Heavenly Bread between us the more we shall all have.”

I remind myself that my new friend, “sees God in her own way...communicates that unique vision with me.”  She has a piece of God's glory that I can't find anywhere else, ever.

Ever.

Did you get that?

Barbie Doll has something irreplaceable, that if I don't let go of my jealousy I will never be able to experience. What a crying shame to miss this unrivaled gift right in front of my

self absorbed face.






August 13th 
Pray that we won't fall into the trap of comparing Oliver to other children in the hospital. This is a greater temptation than it might seem. Pray we'll be at peace with the race we've been given to run. Trusting that the grace for each day will come like manna from heaven.

August 14th 
Pray that we would be able to reach out to other parents that we come into contact with in the hospital.  We'd love to be emotionally wealthy enough to care for them, even if it's just a hug, a knowing smile.  It is a gift to us when we can do something tangible for someone who is suffering in a similar way.

Eternal Siblings

For the creation waits with eager longing for the revealing of the sons of God. 

Romans 8:19

In the midst of our enduring questions and shredded hearts, He sends them. His beloved sons and daughters wearing cloaks of compassion and healing shawls. They've braced themselves to enter into our pain. We are humbled by their extravagant gift. We haven't been loved this way before. We find it hard to receive, yet we are desperate for it.

We slowly make a circle. Chairs creak. The coffee pot alarm sounds three times: beep, beep, beep. Even the appliances know we need not be interrupted. Someone clears their throat. Another silences their cell phone. One laces her fingers around the polka-dotted mug and takes a sip from the steaming coffee. The scent of friendship wafts gently through the air, stirred by the motion of the ceiling fan.

Then they turn to us and ask...“How you are you?”

We lay our frazzled hearts bare to these, our eternal siblings. We feel raw from the endless days of unknowns. We have no practice at living with this level of stress. They've seen us go from sorrow to sorrow, diagnosis to more catastrophic diagnosis. They've witnessed Oliver's seizures. Dreadful moments of his little body shaking, head dropping.  Like a hammer over and over, drool seeping out of his perfectly red lips, eyes blank. His toddler body exhausted from the electrical explosions in his brain.

We talk about our marriage. How we process this suffering in distinct ways, sometimes having no idea how to comfort the other. How we are angry at times, and have no one left to lash out on except each another. The burning intensity of each day pushes us to the brink as parents, friends and lovers.

There is no judgement in their eyes; just compassion and love. We've said enough (maybe too much) and then...

The room is still. Silent. We close our eyes and quiet our minds. Heads bow. Heads that have bowed thousands of times. We're going to be in the presence of our Father—all of us, together.

The prayer begins and we enter His presence; humbly, reverently but, not timidly,

for we are sons and daughters of the King.

We begin to weep swollen, pent-up tears. We are so very...weary.


Andrew and I raise our voices with them, we ask for miraculous healing. We cry out for beauty from these ashes. We ask that He will redeem this pain,
somehow,
somehow...
use it to bind up the brokenhearted. And, if it be His will,
that Oliver's life, our lives
will shine forth as a bright dawn
in a dark world.

I want a snapshot to tuck in my mind for safe-keeping. To call up when I feel alone. I open my tear washed eyes. I let them linger on every single soul. I hear Him whisper this is what it is like.

He is giving me a holy gift. A sliver of eternity. He hits the pause button and in the candlelight, tears all over our floors, I experience it---

souls in perfect unity.

The Bride of Christ.

Breath-takingly beautiful.

One breathing, living organism.

One body, holy and dearly loved.



August 6th

Would you join us in prayer for our church, Christ Community Church? They have been so good to us by giving us evenings of prayer, meals, cards, babysitting, financial gifts, the list goes on and on. Please pray they would be blessed for their self-less love towards our family.

August 7th

Please join us in lifting up those who are coming to be with us in Boston--another extension of this beautiful community we've been blessed with. The first week: Angela & Peggy (Stephanie's mom and grandmother). The second week: Jim & Anne (Andrew's dad and step-mom). The third week: Tim and Trista (friends from Christ Community Church). All three weeks: The Farrell Family (who we will be staying with on and off throughout our time in Boston).

Custom Spot

Patients are scattered all around this fluorescent-lighted recovery room. Most old, very old. 

I'm blabbing about the weather to the nurse. I play with my the Gobstopper size pearl in my left ear. 

Andrew's eyes are on Oliver.  A blanket of anesthesia renders Oliver's small frame motionless. 

Andrew's eyes have newly born wrinkles on the outer rims. These months have given birth to gray hair and midnight wakenings when sleep won't come. Even on that exhausted face, those blue eyes I adore broadcast an ardent love. Shimmery tears appear as he holds the plump hand of his only son. 

And I've seen that look before...love, unpolluted.

I think of finding those two on the worn-in, toddler stained leather couch. Oliver nestled into his strong right arm. Just so. Always that certain little set-up they have. Oliver gets in position: then relaxes under the beefy semi-circle of muscles and warmth. His head pressed firmly into flesh and tendons of the man whose DNA made him. He quiets under the gentle strokes of loving hands on his warm head.

One night in bed I ask Andrew if I can try this position for myself. I want to know what it feels like, to be nestled in the crook of such a perfect arm. As I wiggle in position I realize... I do not fit. 

And why would I? For that is a custom spot. 

August 4th

Please pray, this day, for Andrew. For a calm heart, a patient soul and strength to lead his family in a time of great uncertainty. 

August 5th

Since this began with Oliver, we've been dedicated to strengthening our marriage. Pray that our marriage would continue to flourish and deepen despite the constant stress.

You Can't Un-Ring A Bell

Today's prayer request:
We would not be in a prison of fear because of Oliver's diagnosis or prognosis.

August 1, 2010

One year ago today---

It tumbles out of his mouth, like he has said it one thousand times. “We believe Oliver has Tuberous Sclerosis.”

As soon as he finishes the word “sclerosis”, I boldly ask “alright, be straight with me, what is the worst case scenario?” The doctor, shifts awkwardly, diverts his eyes. I realize he is uncomfortable with the answer. He says “it doesn't matter because all we need to focus on is Oliver.” What? It doesn't matter? Bull-crap! It does matter. This is my son's life we are talking about!

My maternal instinct is in overdrive.  Am I the only one wondering if we could be a bit more specific about the bomb that just went off in our lives? It doesn’t matter. Huh! Let me tell you one way it matters...maybe I need to start putting money in a Special Needs Trust instead of a NC-529 College Savings Account. Perhaps I need to go back to school to be a pharmacists and a speech therapist and a neurosurgeon.

I march myself to the parent computer lab. If this doctor won't tell me the Internet will. Nothing like Google to clear things up.

The florescent light overhead buzzes faintly. The first computer I try looks like it kicked the bucket six months ago. The “newer” (this is a kind description) computer comes on but, the keyboard isn't working properly. Go figure. Doesn't anyone know I am having a mental emergency here? I slam my fingers down trying to spell out those two words I that just exploded into my life. My fingers work with the sticky keyboard and T-o-b-e-r-o-s S-c-l-e-o-r-s-i-s is all I can manage. Google asks, “did you mean Tuberous Sclerosis?” Why yes Google,  I sure did.

I click the first link that pops up. My breath quickens. I wonder how bad is this going to be?

I start down the glowing screen.

“Rare Genetic Disorder” (ok already deduced that from the doctor).

“Non-cancerous brain tumors.” I exhale slowly. I hadn't heard it said like that before. Brain tumors. 

My eyes move down further “mental retardation.”  Then “severe behavior issues.” And, “...seizures are notoriously difficult to control.”

Click to page two: “70% of children are diagnosed with an Autism Spectrum Disorder and 80% have kidney lesions by the age of 10.”

Oliver has this? Andrew has this too? My All-American, healthy husband? My family of three, now has two people with a rare genetic disorder?!?

I sit there for a string of minutes held together by pearls of salty tears. I get caught up on the words...“mental retardation?” They still use those words? Really? Isn't there a nicer, better way to say it? We are talking about my baby here.

As I peel myself out of the chair I think of that saying “you can't un-ring a bell.” It is true. This knowledge I wanted so badly thirty minutes ago is now mine...forever. 

I can never go back.

________

Please check out www.r-word.org, an organization (along with the Special Olympics) that is working to eliminate the use of the "R-word."

O-Team Event

Below is the letter we gave to people who were able to attend the O-Team event this afternoon. The day  exceeded my expectations (that is hard to do). It was an energetic and jolly time of celebration. Light and happy which was exactly what I had hoped for. Oliver had a blast and danced the entire time (with the occasional break for a photo!)

Thank you a million times over to all the people who helped to make this a wonderful experience for our family. We love y'all!


July 31st, 2011

Dearest Friends,

When the helicopter took off with Oliver 364 days ago our knees buckled with fear and our hearts were frantic with the unknown.  In the midst of that chaos, you were with us.  You were with us!  You prayed, you cried, (goodness did we cry) and you met every imaginable need.  You did things for us that we didn't even know to ask for.  And what is more, you've remained with us throughout this last year as the endless unfolding of diagnosis after diagnosis has been entered into Oliver's medical record; Tuberous Sclerosis (August), Infantile Spasms (November), Intractable Epilepsy (January) and then Developmental Delays (January).  You made it easier to cope, to move forward, to know there was Hope.  We feel so unworthy of such love, it is downright other-worldly.  We give thanks to Him who makes all this love, this community, this authentic caring, possible.

This year we learned about George Muller and Hudson Taylor (check them out if you never have).  Both men never asked directly for money, but passionately prayed about it.  They hit their knees and asked for help.  We've done the same.  Their needs and ours too have been fully met...it is with wide-eyed wonder that we've watched this happen. God even got the IRS in on it, when we got an additional refund from 2008! (Really, when does this ever happen?)  Uncle Sam completely covered our Duke Medical bill from February. Ha!  There are many more wonderful Manna stories (as we call them) that we hope to share with you.  And more than meeting our needs, it causes our faith to grow.  That is the best gift.  Thanks be to God!

Every day (beginning tomorrow August 1st) we will post a specific prayer request on our blog www.lanierlanding.blogspot.com.

If you aren't into blogs, then here are our prayer requests:

1)For Oliver to be seizure free for the rest of his life, with no serious complications from the surgery.
2)For us to be good stewards, wise with what has already been abundantly provided; in conjunction with that, for Andrew's work to flourish.
3)Please pray that our marriage would be profoundly cemented instead of torn apart.  Pray that we'd have servant's hearts towards one another even with the lack of sleep and stress.
4)Most importantly, that our faith would continue to grow deep roots regardless of what happens with Oliver's physical health...that we would sense the nearness of God and therefore have an eternal perspective.

As we've prayed about this surgery experience, we've thought about the people who will care for Oliver.  They will prominently appear on our 23 days of prayer via the blog.  We hope that we'll be able to bless these folks who have cared so well for our sweet Oliver.

Finally, as we write this to you our hearts spill over with thanksgiving.  You are teaching us how to wait well. That is a profound lesson.  The living picture you've given us of love in action is a treasure for the ages.


God's grace and peace,

Andrew, Stephanie & Oliver

But blessed is the man who trusts in the Lord. Whose confidence is in him. He will be like a tree planted by the water. That sends out its roots by the stream. It does not fear the when heat comes. Its leaves are always green. It has no worry in a year of drought and never fails to bear fruit. Jeremiah 17:8 (NIV)

Preliminary Pics:

From left to right:

Grace (due December, boy), Shaunna (due December, boy), Annie (due August, girl), Liz (will be induced tomorrow, girl). Aren't they beautiful?  

Oliver was all smiles--all afternoon.  Precious! 

One Thousand Gifts

View the trailer for this book. It oozes the fragrance of eternity.

Here I am with Ann Voskamp, the author of this book. She is the first person I've waited in line to see since “Barbie” at K-Mart when I was 6. The signing of my highlighted book didn't matter so much, I just wanted to look at her and make sure she was real. I needed to know the kind of Beauty she experiences was out there for all of us. All of us! 

And it is, we only need eyes to see.

A Sacred Headline

The Prayer Room at this conference is a holy space. I've looked forward to the experience since I heard about it in the Registration email. I am anxious to find my name paired with one of the names of God.

I walk in--lights are low. Contemplative music wafts through the air. The simple cross in the front of the room stands as a reminder of why I am here. Tissue boxes scattered everywhere. It is a women's conference after all.

In the sea of names and scotch tape I scan. Little slivers of computer paper might hold an answer. I see “Stephanie” on the first (!) sheet. My heart leaps for a split second. It is not me. I keep searching, slowing down. My eyes survey each page-- left, right, up, down. I tilt my head to read the names that are sideways, made filmy by the tape.

I get through the second table and I feel the vulnerability. Perhaps the waiting list people didn't get their names on a sheet? 


 “Crowned one” after “crowned one” I read. Stephanies everywhere but where is the Lanier?

~

I wait with her in line at the book signing. She has chestnut hair, warm smile...rather friendly for 11 pm at night. “I couldn't find my name in the prayer room either”, she says. “I had to go back twice but, I eventually found my name.”

I tell her about the unexpected wound of omission. How much I wanted to see my name under the tape. She understands. She also thought she might have been passed over.

We part ways with a tight hug. She says she is returning to the prayer room tonight and will look for Stephanie + Lanier. I wonder if she'll find it...

~

The phone rings. It is 11:30 pm. Who is that, I wonder? A chipper voice bounces over the line. “Hi Stephanie! It's Christina from She Speaks...I found your name!”

She could see what I couldn't see. What was there all along...

Isn't that how believing works sometimes? He is there but, I just can't see. I need help. I need another perspective. I need community.

“It is Jehovah Nessi, the Lord is my Banner.” (Exodus 17:15)

I will carry this name of God with me in the days to come. The battle ahead. I will wave it before Oliver.

Do not forget, Stephanie + Lanier, do not forget, that He goes before me, just like a banner.

A sacred headline to stand underneath when I need reminding of my ultimate cause.

9 Vials

One type A mama who remembers----his liver has to be checked.

which leads to...

9 vials of blood

over 7 days

One hug from a stranger with gray hair

One bruise from the wiggle of a needle in his vein

0 tears (!)

2 Happy Dances

Now 2 days without Depakote and...his liver is better.

And his mama folds her hands, bows her head, and whispers

“thank you”...to the Greatest Physican of them all

You're Invited!

Please consider this your official invitation to join The O-Team. To get the scoop and RSVP click here:
"O-Team Evite". (FYI this isn't a fundraiser but, rather a time of fellowship and encouragement-raising!) Feel free to forward this on to anyone who might like to come. Oliver would love to hug your neck! Lastly, thank you to our friends for helping us plan this very special event. We love you.

Now, another t-shirt tid-bit...if you are local, this is when and where you'll pick up your t-shirt(s). You still need to buy them through the PayPal button on our blog. This ensures you get the right size and we order the correct amount of shirts. If you are not local, please click the “Buy Now” shipping button (this will be separate from your t-shirt purchase). That way I'll know that you'd like me to mail your shirt(s) to you. You only need to pay for shipping once, even if you are getting more than one shirt, assuming it is going to the same address. Hope that makes sense?

Now for the BIG, BIG, long-awaited news.

We have an official surgery date. August 23rd!!!!!

We've bought our plane tickets. We'll be leaving on Sunday the 21st. Oliver's pre-op appointments will be on Monday the 22nd. We'll also meet with Dr.Thiele and Dr. Duhaime on that day. To finally have a plan and a date is a relief. Let the praying and the planning begin...

This Newbie Needs Help

I'm a newbie in this world of parenting a “medically fragile” child. I have found that almost a year in I still have a truck load full of questions. For other moms who have been in this world a while, I'd love your hard-won insight. Comment below or email me: stephanielanier@gmail.com

Does the grieving end?

How do you help other people understand your child without making excuses for them?

How do you deal with the medical bills, insurance, coverage limits, disability claims, medication administration, the doctor's appointments, marital stress, IEPs, etc. Do you really adjust to the amount of work that is involved in caring for your child?

When and how did you make the decision about having more children? 

Bombs and all

“Having TSC is like walking in a minefield,” says Elizabeth Thiele, M.D., Ph.D., director of the Pediatric Epilepsy Program and the Herscot Center for Tuberous Sclerosis Complex at Massachusetts General Hospital in Boston. “You get over one thing, and you walk right into another. That's what sets this disorder apart from epilepsy. It's not just the seizures. It's not just the brain involvement. It's everything.”

After reading this I imagined us walking in the TSC minefield. Knowing that any step we take a new bomb could go off. I considered the stress level of constantly living in an unknown place. Relaxation is hard to come by, yet true peace has been ours. We know of others in the same minefield and hear bombs erupting near them. We know some have found a safe spot to rest and have even learned how to blossom here. We, the residents, care for one another.  A place where tears and laughter are often mingled together. Medical bills fill our mailboxes but, joy fills our heart as we look at our children. Sadly, some loose their marriages, their savings accounts, their faith, a few their children. Frankly, there are costs involved with living in such a dangerous place. There isn't a map to tell you when or where to go. So often, the only thing you know for sure is that you need help. That is why the neighbors and visitors become so important. They help you know that you weren't meant to carry this alone. The visitors, without even trying, remind you of life outside of the minefield. And that is good. In turn you remind them to cherish the life outside of this place. And that is good, too.  Not surprisingly they aren't part of a bomb squad and yet they come. They come?!? They come! It overwhelms you, the sheer number and tenacity of these friends, these visitors. They are a buttress in this foreign place. And, perhaps most importantly, they keep coming and keep reminding you of your Living Hope. The kind of Hope that doesn't fail.

The visitors and us, the residents, see God's mighty hand all over this complicated and messy field. It is true, there is no darkness that His light can not penetrate. There is no situation beyond redemption. We know this first-hand. So we've decided that while we're here, we'll build friendships, put down some roots, roll out the “Welcome” mat, plant a few flowers, and commit to honor God, whatever unexpected events come our way...bombs and all.

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Our happy boy.  Blissfully unaware of all that is before him. 

Lent

I had all these grand ideas a few months ago that I was going to make a separate blog for this no-make-up-for-Lent-venture (ha-ha!!!!) Clearly time has been scarce but, I did want to share how it has turned out to be a divine surprised. I thought giving up make-up for Lent would be difficult- especially when a big zit appeared; boy was I was ever wrong!

The reason I chose to give up make-up, instead of something more traditional, is I have been mulling around this question for a while now--what is the difference between: expressing myself, enhancing myself and misrepresenting myself? Are any of them sinful for me? As I've thought about this and what it means to be a modern woman but, live a godly life I am often confused. The lines are ill defined and intensely personal. I thought the season of Lent might be a fitting opportunity to investigate what image really means to me. To let go of something temporal for something more eternal.

Let me be clear, I don't dare to be legalistic, I LIKE make-up! I hope to be Tammy Fay Baker on Easter morning! I've missed the mascara the most! Well, now that I think about it, maybe the concealer for the bags under my eyes...oh wait the lip gloss is really nice too. The reality is I don't think about it much any more. See here is what I was getting at. This giving up make-up for Lent has actually be a gift to me, from the Lord. It is funny that I thought I would do something “hard” and instead he gives me something “light and easy.” My burden is light. I have felt free. Not wearing makeup has made me less stressed because it has given me time. It has been a reminder that my worth is found in the Eternal God. The Lord knew what I needed and I would have never “found” it on my own. I'm ending this season of Lent with a grateful heart. A changed perspective. An unexpected freedom. A chance to see things as they really are...blemishes and all.

“Nothing you have not given away will ever really be yours. Nothing in you that has not died will ever be raised from the dead. Look for yourself and you will find in the long run envy, hatred, loneliness, despair, rage, vanity, and decay. But look for Christ and you will find him, and with him everything else thrown in.” CS Lewis

Back to Normal

Sorry for the bullets-so much to say...

• Since my last mega-post we decided we are not doing the Ketogenic Diet right now. Jim (my father-in-law) noticed that if we introduce the Keto Diet and Topamax at the same time we won't be able to figure out which one is working. That made sense to us and also made me feel relieved. This allows us to let Oliver drink as much water as he wants which solves some of the issues with Topamax. Dr. Mikati was in total agreement with us about this but, did ask if we could stick with the Low Glycemic Index for now. I feel fine about this because again, if we go changing too many variables, it makes things more confusing for Oliver's treatment. However, I am going to relax a bit about the LGIT. Go with the flow a bit more and slowly bring back in some carbs. I'll still keep the foods similar for now as we work through all of this. Overall, I feel like the death-grip of the diet has abated.
• The Topamax is controlling the seizures but it is making Ollie VERY dopey. He is like a drunk sailor all day long. He is falling and floppy- a continual space cadet. It is a challenge to keep him from hurting himself as he seems to have no spacial awareness. We are hoping this will get better. We plan to call the doctor tomorrow if there isn't improvement.
• As far as Oliver's development we have no idea where he is since the side effects are so problematic. When his seizures went away before he usually "took off" developmentally. This time we can't tell much due to the fact that he seems stoned most of the time. It is frustrating to "fix" one problem (the seizures) but trade it for another (drunk toddler). I mean we are thankful, but we also miss our wild, alert Oliver.
• The photos above are from his Easter Egg Hunt at preschool. The teachers there are so wonderful. I feel such gratitude for their prayers and love. Those hours each week when I get a break and know that Oliver is safe and well cared for, are precious to me. Anyway back to the hunt, Oliver, just wasn't into it. I just decided to let it be. Another year, hopefully and he'll get it?

TSC and Fear

When Oliver was first diagnosed with TSC I spent hours reading scholarly literature and learning all I could. It was scary. It was unsettling. I was thankful I had recently been to grad school and had a decent idea of how to read articles and understand all the charts and graphs. I am not a doctor but, I felt like I got a PhD in TSC in a matter of months. My appetite for information was endless. As I read there were certain possibilities that troubled me the most. Now one has defenitly become part of our story and, God forbid, another might. Sigh.

#1- Infantile Spasms (only 30% of kids who have these are cognitively normal, i.e., not mentally retarded). By the way "Mentally Retarded" is still the proper medical term. Well Oliver developed these spasms (late onset b/c he was 19 months old when they first appeared) in November. As you know they have taken a terrible toll on his development. This is why they are SO bad. I'll never forget the day the doctor called and said he thought Oliver was having spasms. I felt like I had been sucker punched. I knew immediately that if this was happening it would be bad. These spasms have lived up to their awful reputation of being very difficult to control and wrecking the brain in the process. Please pray these will stop and soon!

#2- SEGAs- these are the big bad brain tumors in the TSC world. They can stop the flow of spinal cord fluid which can lead to death. They are very serious, particularly if they grow quickly and usually lead to brain surgery. If caught early enough the outcomes are usually good. Since they are in the center of the brain the surgery is quite involved. SEGAs grow from SENs. Oliver had 3 SENs as of August. Our Boston nurse, over the phone yesterday, said "We need to do another MRI. I think we need to make sure there isn't any new growth in the ventricles (i.e. SENs and SEGAs)." That was another, take my breath away moment, I know enough to know this a big deal. When medical professionals start talking this way you know they are very worried. Jan, the amazing Boston nurse, is working to make sure that Duke gets us in ASAP for the MRI and EEG. She agrees that waiting until April 26th is unacceptable with how things are going. The plan as of yesterday was to have Dr. Thiele call Dr. Mikati and talk over Oliver's situation. Please pray this will happen as it is the best case scenario for continuity of care. It would be huge, even if the conversation was brief, for them to touch base about our sweetie. I think the idea is on Thur or Fri we would go in for a 24 hour EEG and a MRI at Duke. We might also start the steroid treatment there. So much is up in the air at the moment. I feel good that the Boston team (God bless them) is working so hard to take care of Oliver. I wish we were closer to Boston at times like this, they have become so dear to me!

I want to end with this little picture. Yesterday Oliver and I went to the park. It was a sweet time. He was really engaged with me. The weather was glorious. I had one of those mom moments where you know you'll never forget it. It was an ordinary moment but, it wasn't lost on me. He was on the top of the slide, wind blowing that blond hair, eyes shining happily, then off he goes down the slide. It was a moment in time and it reminded me what a gift it is to be the mother of such a strong, special son. As he ran off to play in the mulch I couldn't help but feel grateful, deep in my soul. I pray often that I can be a volunteer, not a victim of TSC; that I can see these special moments as the merciful gifts that they are.

Daily Bread

If and when a horror turns up, you will be given grace to help you. I don't think one is usually given it in advance. "Give us our daily bread" (not an annuity for life) applies to spiritual gifts too; the daily support for the daily trial. Life has to be taken day by day, hour by hour.

-CS Lewis (of course)

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Since Saturday Oliver has been seizure free. What a welcome break! Thank the Lord! It gives us a chance to exhale and release some of the residual stress. The break from timing, monitoring and recording his seizures is such a blessing. It takes a significant amount of time and mental energy to sustain that level of care throughout the day. Needless to say we are relishing this current rest period :)

This morning at the pediatrician we learned that Oliver's wheezing is much improved but, he does have an infection. I think that means it is pneumonia (?), in his upper right lung. We are doing all the right things to treat it so, hopefully Oliver will have clear lungs soon. The dr. was encouraged by how well Oliver seemed to be feeling despite the little bit of wheezing. Overall, we feel like we have the worst behind us with this round of wheezing.

While we were there we asked about Oliver's left foot. As many of you have seen, mainly when he dances, he doesn't flatten his left foot. It makes for really cute dancing but, it isn't going away or getting better. It is hard to keep shoes on him (particularly the left foot). He isn't jumping with both feet yet which is clearly related to the left foot issue. Our pediatrician thought that this issue might be due to strength differences but, that doesn't ring true with me. He did send us home with a referral for a physical therapy assessment which, makes me happy. I plan to ask Dr. Mikati about this issue today. I have a hunch it is neurological because when Oliver has seizures, the left side has more involvement. This isn't a huge deal right now but, I fear if we don't intervene, as he gets older, all this won't be so cute.

Can't wait to report on the 6 hour road trip with our ever charming, always obedient, 2 year old :)