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.”

Sunday, May 11, 2014

Home

We're finally home and SO thankful. Oliver is now hydrated and we are hoping to keep the pace at home, despite his lingering tummy issues. Thanks for all your love and support. We are so appreciative of all the ways you've cared for us! We are blessed beyond measure by your friendship.

We're gearing up to go back to Boston for a hospital overnight in 10 days. We'll be posting details of that trip on this blog. 

Sleeping before we left

An Extraordinary Woman

The first eighteen years of my life you lived across the street, and an enormous part of my childhood was spent by your side. You have had a profound impact on my life, especially as a mother and entrepreneur.

I can’t think of a night during tax season (for my entire life) when your house wasn’t glowing with the light of a woman working into the wee hours. As a child, I remember wondering if you slept at all. All of us in the family were in awe of your boundless energy. I never saw you willingly take a sick day my whole life. I watched you push through things that would have put most people in the hospital. You got stuff done. You are the hardest working person I have ever met, period.

I can’t count the amount of times that you were stopped in the middle of grocery shopping at Food Lion to be asked about taxes. Or the times we were interrupted at supper at the “Fish Camp” by a client worried about their payroll taxes. You were gracious every.single.time. I never understood all the interruptions or why people seemed to adore you. Now that I have paid taxes and run a business, I understand the connection one has with their tax advisor!  You had a servant’s heart long before Dave Ramsey started talking about Servant Leadership.

You had two phone lines in your office. One was the main office number, and one was the private family line. Despite how busy you were, we always had access to you. The president could have been in your office and you would have answered the family line. There were no exceptions; it rang, you answered. Because you literally worked around the clock from Jan 1-April 15, we often ate take-out and shared about our day sitting around your desk. You were never too busy to hear about the woes of a middle school girl who needed some loving encouragement.

You were one of the first women to operate an H&R Block Franchise. I don’t know if you were the very first, but you were on the bleeding edge. You never mentioned gender to me, even once. On top of all of this, you were the proud mother of three children, while Papaw had to be away frequently as a long-haul truck driver. You also found yourself as the caretaker of your mother, who was sick and required significant medical help for most of your adult life. You were a good daughter.

In addition to taking care of seemingly everybody, you played the piano at church, took sugar-free treats to diabetic friends in nursing homes, and faithfully delivered (in your station wagon) no less than 10 poinsettias to the graves of family members every Christmas. You are an extraordinary force of nature.

Mamaw Shirley and Oliver

Perhaps it wasn’t just work ethic that impressed me so much, as I look back.  It was also your grit. Recently there has been much chatter from psychologists and business leaders about a person’s “grit”. Grit tends to be an incredible predictor of success in virtually everything, whether it be business or personal.  

The reason for your grit was likely found in your childhood. In losing your father to the murderer who put a bullet in his head. In losing your first husband to a grisly car accident that made front page news. When your mother’s knees fused together as a result of being bed-ridden for years, she relied on you for virtually everything.

The story is often told that when you were a little girl, you’d put other kids ice cream cones on your father’s tab at the drug store. When you grew up, you were still sharing generously. Many of the great experiences of my life I can trace back to your giving spirit. You love to give us good gifts. You love to bless those around you.

Through my parents’ deeply painful divorce, through middle school bullying and being #11 when 10 were chosen, you were always there. You were the rock that stayed steady even when the strongest waves rolled across my young life.

I hope I get to be that rock for someone else one day. To love them through their most fragile times. To fan into flame their unique gifts and talents that God gave them.

I am incredibly thankful God put you in my life. I hope I’m half the mother and businesswoman you have become. Everyone needs a Mamaw Shirley. Everyone needs a woman whose character was forged in the crucible and came out the other side shining light onto others. Happy Mother’s Day.

Saturday, May 10, 2014

Hospital due to Dehydration

We are in New Hanover​ hospital with Oliver. He is very dehydrated, getting multiple bags of IV fluid, blood work and an abdominal x-ray (which came back ok). ​

We have to spend
​ tonight here ​
to figure out what is going on.
 ​ Another night of sleep depravation, God help us! 
The rest of 
Thursday (our 21 hr long trip to Boston) was one of the worst days of our lives. I thought Andrew and I both were going to loose it.
 ​ 


Andrew was unable to stay awake and is now at home​. Since Wednesday he has only slept a few hours total due to travel, ​Oliver 's illness​,
a cold​ and work. 
​The man is as worn down as I have seen him. ​

​I am here in the hospital bed with Jim (Andrew's dad) trying to keep Oliver calm. He is in pain, angry and frustrated. My mom and grandmother are coming to do a shift this afternoon with Andrew coming back for the night. Whew, I'm exhausted just writing this.

We saw great teamwork between our Boston doctor and our local pediatrician Dr. Pollock via email today. We started our morning at Medac, but ended up here at the hospital, which clearly was necessary. We are so blessed by our medical team. ​We also had our always awesome CNA, Zach with us from 7am until 2pm...he is a rockstar! 
***Apologies for the formatting. 

Tuesday, April 22, 2014

Let It Rise


The worship will rise all around us.

The floor will sparkle with tears. The weariness of disappointment will be palatable. The hope of what is to come will be heavy, like a blanket.

One goes to combat
One goes to the surgeon's table
One goes to the clinical trial

In community we'll raise our voices together. Our church family what it was created to do...
Bind up the brokenhearted.
Lift the heads of those hurting.
Year in and year out share the burdens and triumphs together
until one glorious day we are around the Great White Throne and

He will wipe
           every tear away


And worship will rise all around us.


Friday, April 18, 2014

Liquid Hope

In 6 days we’ll hold in our hands liquid hope. 

How we have longed for this day. Our hearts swollen with gratitude that we get this chance. 

Thankful to find our son, sweet Oliver counted among the 125 small ones with access to this medication. 

What do we hope for? What are the stakes exactly? 




If we could hear “mama” tumble out of those beautiful red lips. Might we hear an “I love you” just one.more.time. in my whole life? I promise myself that I will record it and I will cling to it when he can so no words. When the seizures make him goes deep within and we can’t find the boy we love in that body. 

We know anytime he says those three words, could be the last; we’ve lived with that horror everyday. 

We know what it is to have and have taken away. Repeatedly. 


It can break one’s spirit, and yet it has not broken ours; for we know we are entitled to nothing. 



All is grace. 



Our unique boy with bright eyes and sloppy kisses. 


We can only pray that the liquid hope runs through his body like healing lava. That it somehow restores, unlocks and sets free the child we once knew so well...

Wednesday, March 26, 2014

Attitude Just Might Be Everything...Purple Day 2014


Today is Purple Day, the International Day for Epilepsy Awareness. I already have on my purple and Andrew is wearing his on the set of "Under the Dome".

Oliver isn't dressed yet, or even up because he had a nasty seizure to start his morning.

Face down in the covers, gasping for breath, gagging and limp. I hastily turn on lights to see if he is still breathing, make sure his lips aren't blue, kiss his chubby cheeks, run my hands through his blonde hair.

I hate these seizures so much and as I walk down the stairs, I'm tempted to feel sorry for myself. Sorry for him, for us. I'm tempted to wear this purple all day and mourn. Mourn the loss of so many dreams, of so much he'll never know about life. Mourn that I haven't heard "I Love You" in months and that he has never asked us a question, not even once in his whole life.

BUT, I'm going to make a different choice. Today I'm going to wear the purple and think of the incredible families and children we've been honored to meet (Netta, Mia, the other Oliver, Charlie Claire, Sophie, Carlie, Ryan, Zoe, Dylan, Celia and so many more).

Purple Day 2013

Today instead of a pity, purple party I'll thank God for our amazing team of physicians. I'll let my heart fill with gratitude for the CBD drug trial Oliver gets to start very soon. I will FORCE myself to find the beauty in the ashes. I will pray that I have eyes to see the 4th Man in the fire. 

I will think of you, all of our friends and family in your purple. Driving your cars, checking your email, eating lunch, covered in purple for our Oliver.

Today, I will give thanks even when I want to mourn all the tiny deaths....

For there is so little we can change, 
except our attitude. 

Happy Purple Day 2014!

Saturday, March 1, 2014

21.5 Hours

After 21.5 non-stop hours we woke up this morning to feeling as though we had an epic hangover.

We spent about $1,000 in those short hours and although I feel like I took 10 vodka shots and rode a bull, I did neither.

Are we crazy? Sure, but whatever it takes for Oliver!

Our little superhero!

Our prayer was two fold. First, that we would have eyes to see the goodness of God in this, and also that Andrew and I would remain a team. Travel together with someone for that long and no matter what you say at hour 20, it will probably sound "snappy"! We just decided to not talk and listen to "This American Life" for hour 19-21.5. Good plan if you ever find yourself in this situation :-)

When you have eyes to see there are blessings everywhere. First, all our travel arrangements went as planned (this is huge in the Northeast in the winter).

We got to hang out with the Farrell family, who graciously picked us up at the airport and cooked breakfast for us. There could not be a more generous family in Boston; they are so good to us. We also took a nap at their house before our flight out of town. They are exceedingly more than we could have asked or imagined.

We were amazed again at how blessed we are to be in this drug trial. 125 kids out of 300,000 in America with Epilepsy. We are so blessed and thankful.

Finally, we were surprised by our A-mazing occupational therapist, Seth, who stopped by today with a meal and bottle of wine for dinner tonight. Totally unexpected and so thoughtful. We don't deserve how good you all have been to us. For the emails, texts, funny cards, videos, hugs, thank you.

More like a face plant than a kiss, but I'll take it!
It feels like we are running an endless marathon and despite the finish line moving constantly, we have an army of amazing people cheering us on, binding up our broken hearts, shouting encouragement, and feeding us along the way.


Our marathon times, roughly.

Our doctor has asked that we not put much of the details of the trial on social media due to its sensitive nature. Of course we agreed and understood. Here is what I can tell you: we will start in the med in the next few months and it will be in liquid form. We will make 15 trips total to Boston and 9 of those will include Oliver.

We love you all and are grateful for each of you.

Thursday, February 27, 2014

Clinical Trial Begins...



This photo is from Oliver's very first EEG when he was 19 months old. It has been 1,306 days since that August afternoon. Epilepsy was a monster then and it still is.

We hope CBD will bring him some relief, so tonight we'll be rising at 2:45 AM to drive to Raleigh for our flight to Boston. We'll have two appointments to begin the clinical trial. We arrive back in Raleigh at 9 pm. This kind of travel, with a medically fragile child, will be brutal.

No CBD at this baseline appointment, but this is the preparation for what lies ahead. In our hearts we pray for a miracle, in our heads we know we have to be realistic. This is a hard place to live for 1,306 days...our hearts are so weary of the failed treatments. Even so we feel so incredibly grateful for this opportunity! There are so many children without access to this life saving treatment.

Thanks for cheering us on in this wild adventure. It helps to know we are not alone.

And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith.  - Hebrews 12



Thursday, January 23, 2014

We Have a Date

We'll have our pre-trial, baseline appointment for Cannabidiol therapy on 2-28-14!  We'll fly to Boston for the day (God help us) for the three hour appointment. 

2-27-14
Drive to Raleigh and spend the night

2-28-14
Fly out at 6 AM, arrive in Boston at 8 AM
Appt at 11:30 AM at Mass General
Fly out at 7 PM, arrive back in RDU at 9 PM

I really want to try to do a one day trip and see how brutal it really is... 
I might be crazy, we'll see :-) 

From Nurse Jan: 
"at the 2/28 visit Oliver will begin a 1 month " baseline" assessment of seizures- this is BEFORE he starts on the study drug;  during this 1 month phase, we cannot make med changes ( except for emergency med use, eg diastat or ativan if needed )"

Remembering how awful the failed brain surgery was
and waiting for a more gentle, less painful, way to help ease the seizures...


So realistically, Oliver won't be getting his first dose until the end of March. I wish we didn't have to wait so long, but I'm still so thankful we are in the trial. 

Thank you for all the support and love you've given us. We have a big year ahead of us with so many hopes...it is nice to have friends on the journey with us. 

Good news for Georgia regarding legalization of Cannabidiol therapy. I wonder when NC will get it together? 
http://www.huffingtonpost.com/2014/01/23/georgia-legalize-cannabidiol-oil-medical-marijuana_n_4647256.html


Monday, January 13, 2014

Praying for Ryan Margaret...brain surgery 1/16/14

Please join us in praying for and supporting sweet Ryan! This cutie is 2 1/2 and is having brain surgery on Thursday at the Cleveland Clinic. Would you join me in reaching out to this family and showing your love? I think we are too late to get the t-shirts they made, but you could take a photo holding a sign. Remember how we did that with Ollie on his surgery day? We got photos from all over the world and it was SO encouraging?

Those hours while you wait, while your child's skull is being cut by a saw and the hope of seizure freedom is dangling like a carrot before you...they are brutal hours.


Ryan Margaret's Blog:


Carrie and I don't really "know" each other, but like so many moms of medically fragile children we found each other through the blog. Her email to me Saturday morning was a gift. She told me she'd read through our blog as she prepares for Ryan's brain surgery. That she got the t-shirt idea from us, which of course we got from someone else!

To be able to encourage or help inspire others is a great honor. Having a sick child may be one of the hardest things a person ever deals with. When I'm get overwhelmed that I can't see the beauty in the ashes, along comes an email, a new friend and it helps me carry on.



Let's lift up and show our support for this beautiful girl and her parents on Thursday!