We found ourselves in downtown Raleigh on a Thursday evening, walking about Fayetteville Street Mall, looking for some reasonably priced grub for the crew.  This was another spontaneous outing while we escaped from an eerily clean house for a last minute showing.

There were lots of food trucks and people selling their wares.  Live music was pulsing in the air and my children spied a booth hosted by the Carolina Hurricanes.  It was an inflatable slap shot zone where kids are given five attempts to shoot a puck and hit winning targets.  The prize was a red t-shirt.  8/9 O’Melias gave it a go.  Maddie was our only winner.

Gabby passed on making her best slap shot attempt.  I was secretly relieved.  I knew it would be a struggle for her to one-handedly grasp the hockey stick and make contact with a puck sitting on pavement.  We moved onward.  We contemplated our need for ice cream.  It was then that Gabby decided, yes, she needed to step up and give this hockey challenge her very best go.  Ugh. My feelings were so very mixed.  I was thrilled she was being courageous, yet concerned she would be discouraged or suffer embarrassment.  I stood and watched as she stepped right up to the young man running the show.  He handed her the stick.

We want so much for our children to succeed.  We want to save them from the hurt, the humiliation, the rejection.

“Maybe I should go help her.” My fear bubbled over.

“Don’t you dare.”  His words came so unexpected, cutting decisively through my doubts and uncertainty.

I stood stock still, willing her towards success with all of my being.

She swung the wooden stick and missed numerous times.  She made contact and the puck slid a few measly feet.

The booth attendants grew uncomfortable watching my girl struggle.  They saw how lefty was drawn up, useless, just along for the ride.  They didn’t know how to cheer or how not to cheer.  They felt awkward.  They felt sympathy.  They offered my Gabby a free t-shirt for her efforts.  She declined.  She knew she had not achieved anything remarkable.

Good job, I said, I’m so proud of you for trying.  My eyes smarted.  Tears threatened. This girl of mine is braver than her mama, I thought.  Always has been.

We walked away that night, satiated by vanilla ice cream with sprinkles.  It was a good night filled with family adventure and fun, yet I still could not shake those words…

”Don’t you dare.”

Don’t you dare intervene.

Don’t you dare help her.

Don’t you dare swoop in and come to her rescue.

Let her struggle.  That was the bottom line.

She will never achieve her potential for independence unless you allow her to wrestle with challenges, flounder in uncertainty, and fail at the difficult.

This truth is so very hard on a mom’s heart

So just a couple of days later my resolve to interfere less in her daily struggles was tested.

A  letter from Betsy, her very favorite therapist in the whole world, arrived.  She carried the envelope around with her, as all kids do their most treasured possessions. She plopped down on my bedroom floor and began to read the 3 page letter, as I watched.  Yes, she was just as pleased with its contents as she had been the first time she read it.  Satisfied, she began to slide the pages back into the envelope.  No dice.  She tried time and time again to get those sheets of paper to clear the confines of the receptacle.  She held the envelope with her foot to stabilize it while she every-so-carefully reintroduced the pages.  Denied.

This was insanity!!  How long had it been?  Twenty minutes?

I can’t watch anymore.  It’s too much.  Everyone has their limits.

Her patience, her perseverance…it was breathtaking…it brought me to tears.

She problem solved.  She separated the 3 sheets.  She folded the first one and holding the envelope with her foot slid it in.  Success!  She repeated this process with the second page.  Yes!

She had only the final page to go.  The envelope was fuller now.  The third folded page was meeting resistance.  She continued to wiggle and change the angle…..

Finally, the task was complete.  A sigh of relief escaped me.  I commended her for her great effort.  I explained how things were always going to be harder for her, but if she didn’t give up, she would accomplish great things.

In that single, excruciatingly long moment of testing, it was confirmed, that choosing to stand by and watch, might be the most powerful decision I can make in my daughter’s life.

Whoa.

“Don’t you dare.”

Please pray for this helicopter mom.

I recently took my Gabby girl back to UNC for a follow-up appointment with her orthopaedic doctor.

I swung our 12-passenger van widely to make the turn into the parking space.

“Oops.  We can’t park here.  This is a handicap spot,” I remarked.

“What is handicapped even for?” she asked.

I began to explain.  I began to tell her how much some people struggle to get around…

And then I saw them.

A mom pushing her severely handicapped child.  They exited from the front of the building and walked toward us.

“We thought that would be you, Gabby.  We didn’t know if you would ever learn to walk, talk, or read.”

“Really, Mom?”

Yes, I told her, we fully expected to be the ones parking in that special spot.

Mercy if the tears didn’t threaten to overflow right then and there.

Tears of thankfulness for what He had done.

We didn’t deserve it.  We don’t deserve it.

He lavished us with His abundant mercy and grace.

Us, a broken-hearted family in the lowliest of places.

He silenced the electrical storms long enough for her to find her legs to walk.

Long enough for her to figure out her voice to speak.

Long enough for her mind to make sense of the letters and read the words.

I took my child’s hand.

We glided across that parking lot and into the clinic.  Not one stride taken for granted.

We saw the doctor after an hour wait, and do you know what he said?

“She looks fantastic.  What more could we ask for?”

I was overwhelmed by those words in that moment.

Overwhelmed by how true they rang in my heart.

Overwhelmed by how true they rang in my mind.

Overwhelmed by how truly wonderful He is.

Gabby has been doing fantastic.

We haven’t seen any blinking or suspicious activity since we increased her seizure medication back in January to regain therapeutic levels.

Gabby continues to move forward academically with her reading and math, even her penmanship has improved.

She enjoys sitting wherever she lands to read chapter books for fun.

She continues to strive toward independence with everyday tasks like bathing, brushing hair, and changing out of wet bathing suits.

While we were away this summer Gabby shocked me.  She pranced out of the bathroom completely dressed in a clean outfit.  I was thrilled.  I was overjoyed because I knew only moments before she had entered that changing room in a wet bathing suit and rash guard, something she regularly struggled to remove one-handedly.  When I asked her how she had managed such a feat, she said…

“I had this idea in my head that I could surprise you and get myself all changed and dressed without any help.”

I’m still celebrating that moment.

And speaking of celebrations…

Gabby turned 10 last month.

Double digits.

Craziness.

She wanted to go to Build-A-Bear more than anything.

I tried to talk her out of it…

but this girl apparently knows what makes her happy.

Father, what more could we ask for?

You have blessed us tremendously.

Given us so many undeserved gifts.

Our hearts overflow with thankfulness.

Pie Face.

When I first heard about the game I thought it would be ridiculously fun to play with family.

I should have made my purchase before Thanksgiving though, because when I went to buy it, the stores were sold out.

Fortunately, our neighbors came through and saved us from much sadness when they gifted us the game!

Woohoo! Thanks, Griffis Family!

We sat down to play the Saturday before Christmas.  I wondered how my Gabby girl would do.

She has a tendency to experience sensory overload when input exceeds her limits.

Heck, it will probably be good therapy, I rationalized.

It will expose her to a different sensory experience in an entertaining way.

We proceeded with the game.

She found it hilarious when anyone else got creamed.

But when her turn came around, she looked petrified.

And when that whipped cream whooped her in the face,  she froze.  She was completely stunned.

She became very blinky.

This made logical sense given the large dollop of dairy that had just hit her face.

But the whole scene scared us.

It scared us because she had been a little blinky earlier that day.

It scared us because it reminded us of something we hadn’t had to deal with for 6 years.

It scared us because it brought us right back to the days when our child’s brain had been regularly assaulted with abnormal electrical activity.

It scared us because…seizures.

We cleaned her up.

We watched.

We waited.

We performed various neurological tests.

She was fine.

We moved forward and allowed that scary moment to move from consciousness to the back recesses of our minds.

We traveled north for Christmas.

We unwrapped gifts, ate lots of deliciousness, and enjoyed family.

Then we discovered Gabby on the couch blinking away as she watched morning cartoons.

She was responsive, she wasn’t losing consciousness, but she was undeniably experiencing some kind of seizure activity.

Here is what we saw:

I gave her an extra dose of Trileptal.

She had been weaned down over the last few years to only a 450mg dose daily.

The blinking continued.

She began to behave in a less reassuring manner.

Her face looked washed out and she wanted to sit on my lap and snuggle.

We gave her a .5 mg dose of Klonopin and waited.

After about one hour she turned a corner and was back to business as usual.

Well, except for some intermittent blinking you would notice upon closer examination.

We contacted her neurologist, Dr. Awesome.

He normally goes by the name Orrin Devinsky.

We hadn’t had any communication with this man in 6 years,

but when I reached out to him the Saturday after Christmas,

he responded 20 minutes later, via email, from South America.

Can you even believe that?!

This man’s commitment and dedication to his patients has blown me away on more than one occasion.

We were interested in getting Gabby evaluated by her doctors at NYU since we were already visiting the northeast.

They scheduled us for an appointment a few days later and the physician agreed that a video EEG would be helpful to get a better idea of what exactly was going on inside that pretty little head.

We were admitted to NYU for a two night stay.

We captured several of the blinking episodes while she was connected.

She always remained aware of her surroundings and was responsive.

The EEG showed nothing abnormal.

This was really good news because we ruled out subclinical seizure activity and the possibility of nocturnal seizures.

I guess the not-so-good news was that although the EEG is presently normal, we are definitely seeing evidence of seizures.

Seizures that occur in a localized area of the brain and don’t cause loss of consciousness are called simple partial seizures.

Simple partial seizures don’t always register on the scalp where the electrodes are glued.

Consider Gabby’s anatomy specifically.  Her right hemisphere is essentially gone and the vacant space has filled with cerebrospinal fluid.

Imagine the challenges in trying to accurately measure abnormal electrical activity that is occurring somewhere deep in the brain beneath that fluid.

The other good news is that Gabby has taken a very low dose of medication over the last several years.

In fact, when they drew labs to check her blood level, it was barely in the range of therapeutic.

This means that if we increase her Trileptal some, we may see this disconcerting blinking disappear as quickly as it appeared.

If I had it my way, I’d take these seizures away from Gabby forever.

But my ways are not His ways.  My thoughts are not His thoughts.

And just as the heavens are higher than the earth, so are His ways and His thoughts higher than my own. (Isaiah 55:8-9)

So I have to trust and believe that my God knows what He’s doing.

Seizures or no seizures.

I guess there are just some birthdays that seem bigger than others.

They stand out for whatever reason.  They strike a mama’s heart in a different way, with more severity.

The age they’re turning, it screams “older” more loudly than the other years.

That was this year for me.

It was deafening.

It was crazy!

How could my sweet girl be turning 9?!

This. Can’t. Be.

And maybe it had something to do with my girl’s limitations.

You know us special needs moms are always wishing that a year could be a little longer for our kiddos.

If they had a bit more time, then maybe they would catch up.

We’re certain a few more months would make all the difference.

If we could just slow the clock down long enough, then maybe their milestones would match their chronological age.

They would surely be physically independent, socially appropriate, and perform at grade level, with time on their side, right?

Honestly, what this year of turning 9 shouted most emphatically was that my daughter wasn’t really acting her age.

It can be a bitter pill to swallow.

It can cast dark shadows on the miracle this child is.

It can prevent you from enjoying the blessings this child brings.

It can rob you of thankfulness.

It can cause you to question God’s plan and purpose.

It can undermine your trust, and shake your faith in Him.

But, what if instead…

you threw all the charts, tests, graphs, and expectations out the door?

What if instead…

you loved this miracle child with all of your being?

What if instead…

you danced together in the rain and counted every drop a blessing?

What if instead…

you searched for the unique gifts this child possesses and overflowed with thankfulness?

What if instead…

you surrendered your ideas, the world’s expectations, and waited expectantly for God’s good and perfect plan for this child to unfold?

Lord, I trust your promises.  I believe this child is exactly who You intended for her to be.

I know that Your ways are perfect.  I know You work all things together for good.  I know You desire to give individually what is best for each of us.

Lord, help me to stop comparing this child’s achievements to normal standards.  I don’t want to see a child who isn’t measuring up.  

I want to see this child through your eyes, Lord.  I want to see a daughter of the King who is enough, who is perfect,  just the way she is.  

I don’t want to feel cheated…wishing or hoping for more.

I want to have only joy, Lord.

I want to celebrate Gabrielle Faith on this 9th birthday and cherish her completely with Your perfect love.

So yes, that’s exactly what we did!

Gabby awoke on her 9th birthday and I told her we were going on an “adventure to somewhere”.

She was thrilled.

I told her Makinley and Keagan would be joining us. They needed to pack their bags.  We would be leaving after breakfast.

There was much excitement in the air.  But you know, after two hours of driving and many erroneous guesses, the surprise factor begins to lose its glamour.

We were about 2/3 of the way there, when Makinley suggested this must really be “the trip to nowhere”.

I figured it was time to stop for lunch before this bunch grew any more disillusioned from a lack of leads and low blood sugar.

Chick-Fil-A…

Gabby could eat there seven times a day.

It was chicken tenders, waffle fries, and sweet tea for my birthday girl.

With bellies full, we continued onward toward our destination.

They still hadn’t a clue.  Not one of them.

We rolled up to the entrance and Keagan alone understood where we had arrived.

Gabby and Makinley were confused. Excited, but confused.

Because I had told them to bring along swimsuits, Kin was now certain we’d be swimming with the wolves.

I guess this could be a fun alternative to swimming with dolphins, no?

We received wolfie ears and Happy Birthday wishes upon our arrival!  They were impressed.

After checking in, we stood by the elevator waiting to catch a ride.

Both Keagan and myself, fully expected the girls to notice the large windows across the way, boasting a view of all things water and fun.

They didn’t.

We suggested they might want to take a gander, over there, in that direction.

When they did, there were exclamations, much jumping, and unbridled excitement.

We have to get changed so we can go and play, they insisted.

We found our room and whipped out the swimsuits.

We did all things water.

I think my favorite slides were the ones especially designed for toddlers.

Thankfully Gabby is more adventurous than yours truly.

She had an absolute blast!

Still, we had to stop for nourishment occasionally.

When you’re climbing about 80 steps per slide…

you develop some bigger quads and an insatiable appetite!

She loved the special show that night…

and story time with Brinley the Bear.

We took pictures over our Dunkin’ Donuts the following morning…

and then participated in the nature walk and pumpkin decorating.

Gab loved every minute of it.

After that, it was back to the water park!

Because, why call it a day when you can ride the Howlin’ Tornado one more time…

And almost lose your lunch?

And spend two hours wracked with nausea?

And wonder if you’ll ever make it home?

I’m not sure how I would have survived this trauma without Keagan-to-the-Rescue.

Seriously.

That girl can ride some rides.

And she carried some cheese for this sick mama.

The four of us had a wonderful stay at Great Wolf Lodge (mostly).

We created some super-special memories together.

But it was time to head back to the ranch for some more surprises!

Happy 9th Birthday,

Gabrielle Faith O’Melia!!

You are an absolute GIFT!

“Thank you, Mimi, for my purple bike.

It is awesome to be able to ride a bike like other kids.

I never thought I would be able to.” – Gabby, age 9

This was the first year it happened.

The first year September 14th slipped by unnoticed.

I vowed this would never take place.

I promised we would always remember what the Lord did on that day.

In my defense, it was a Monday.

And I did have an uneasy, nagging feeling that day when I glanced at the date on my iPhone.

I even wondered out loud if I was forgetting the birthday of a special someone.

Then it dawned on me two days later…

Seizure freedom.

September 14, 2015 marked six years of seizure freedom for our sweet Gabrielle.

How could this mama have forgotten?

The same mom that once counted seizure-free days had forgotten to count 6 seizure-free years.

The same mom that stood in the sterile hallway of NYU Langone Medical Center kissing her almost 3-year-old daughter goodbye before she was wheeled into the frigid OR.

The same mom that prayed this prayer while Gabrielle Faith underwent a fifth brain surgery:

Lord God, I ask you to move this mountain from our lives in the name of your son, Jesus. I ask with the faith of a child knowing without doubt that you alone are fully capable of healing our daughter of these debilitating seizures. And Lord, I ask that if this is not your will, that you would provide us with all of the strength and endurance necessary to continue on this journey.

He has given us 6 seizure-free years.

Isn’t that huge?

We don’t live between hospital stays.

We don’t live between adrenaline rushes, fear gripping us.

We don’t live between caring for a child with severe physical disabilities.

We simply live…our hearts filled with gratitude.

And lately, it seems we have been living so well,

that we have forgotten to count the minutes, the hours, the days, and the years,

that our amazing Creator has given us.

Thank you, Lord, for your loving kindness.

She wanted “Frozen” and she wanted to be surprised.

She wanted an ice-cream cake with “Anna” and “Elsa” on top.

She wanted lots of beautifully wrapped presents.

She wanted to play games like “Pin the Tail on the Donkey”.

I love a girl who knows what she wants!

Except when her real birthday passes without adequate recognition, and she’s more than a little bummed.

It was hard on this mama to wait-it-out without the slightest suggestion that there might be something more to come.

So I reminded her that we would eventually celebrate.

Saturday arrived and we were prepared to move into action.

Duff left first thing with the unsuspecting birthday girl.

They ate breakfast at the donut ship and visited the library for story time.

They stopped in at PetSmart to visit the “cutie patooties” (aka mice).

Meanwhile, back at the ranch, the rest of us turned ordinary into a ‘Frozen’ zone.

We put Anna, Elsa, and Olaf, on plenty of ice.

We prepped food and snacks.

We hung streamers and balloons.

We hid and waited for our little lady of the hour to make an appearance.

I think we were successful in pulling off the surprise!

Now to let the fun and games begin!

And the CRAZY!

Elsa is her favorite…

Aside from her best friend Makinley, of course!

We kicked things off with a 12 step ‘Frozen’ scavenger hunt.

I printed up the clues from here.

She read each clue…

Followed by more detailed instructions on the back.

Each card, led her to a wrapped gift,

which she eagerly tore open.

The whole crew was curious to watch the unveiling.

This was followed by some “Pin the Nose on Olaf” fun!

She was actually pretty good at it,

and surprised herself with easy success!

The scavenger hunt continued.

It was awesome to watch her reading the clues,

and figuring out the directions.

This was probably her favorite prezzie…

Though it’s difficult to compete with a ‘Frozen’ manicure…

and pink sunglasses from big sis.

We finished up with the ice-cream cake, she essentially hand-picked herself, several months back, at Dairy Queen.

She requested the traditional ‘Happy Birthday Song’ when given opera and rock alternatives by her older siblings.

I think she was pretty pleased with her choices,

don’t you?

Happy 8th Birthday, Gabrielle Faith!!

You are an absolute blessing!

I have released dreams and relinquished expectations.

I have placed my trust in Jesus.

In a way, I think deep down, I always felt like I was settling for something less good.

A less desirable life for my daughter, not just a different one.

A more difficult life for my daughter, filled with struggles and overcoming, perhaps even dependency.

A more difficult life for me.

Sure it was His plan, but did I really believe it was perfect and better than my own?

How could living with half a brain, limited vision, and one arm, possibly be best?

I wanted to avoid the pain, struggle, and difficulty, of having a daughter with special needs.

But God took me to a place where he stripped me naked of everything I knew and understood to be true.

A place where I could no longer trust myself and the ways of the world….

Until I finally saw that His way is the only way.

He wanted me to give up everything and follow Him.

He wanted to know I loved Him enough to let go of the stuff, even the people, I held most dear.

In the deepest and darkest of valleys, I finally saw myself for the completely powerless, imperfect, control freak that I am.

I let Him take the wheel.

The ways of Jesus are simple, but certainly not easy.

Would I love Him enough to let go?

Would I love Him enough to trust Him with my daughter’s future?

We celebrated 5 years seizure-free on September 14, 2014.

Deep inside, I know that the thieving seizure monster can return at any moment.

I will not live in fear.

God is in complete control of everything and He is good.  All of His plans serve a higher purpose.

My awareness of this reality is what motivates me to shower the Lord with thankfulness and appreciate the many joy-filled days we’ve received.

I am quite sure I have never understood the Lord’s astonishing ways more than I do right now.

Just to watch her learn and understand this world is an absolute privilege.

She is almost swimming and faces waves fearlessly with a boogie board in her right arm.

She is reading at grade level.

Her fine motor skills have improved tremendously.

She is counting to 100!

She is conquering hurdles left and right.

I wonder how much must be taken away for us to find joy in what we’ve been given?

She is happy.

She’s empathetic.

She’s honest.

She’s joyful.

She’s stubborn to a fault.

She is positively content in the shoes God has called her to walk in.

Am I?

Yes!

I cannot imagine my life with a Gabby any different or “better”.

She is exactly what I needed. She is precisely what this world needed.

She tests and boosts my faith in ways I never imagined.

She reminds me daily of His never-failing faithfulness.

God is good.

His ways are always perfect.

Have you ever noticed that emotional arousal creates incredibly vivid memories?

When your body’s stress hormone is released, memory making is kicked up a serious notch.

That’s why when something really amazing, terrifying, or shocking happens, you often remember what you were wearing, where you were standing, the music that was playing, and the smells that surrounded you.

I have many intense, detailed memories from the years when my Gabby was her sickest.

I can recall pulling up to a red traffic light on my way home from Duke University Medical Center, listening to the Matt Redman song ‘Blessed Be Your Name’ for the umpteenth time.   Yet never before had I really comprehended the meaning of the lyrics-

Every blessing You pour out 
I’ll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

I began sobbing uncontrollably as I sang the words inside Duff’s kickin’ “roadster”.

Scared to death of their meaning,

while at the same time, trying to summon strength from their meaning.

(I was obviously surviving on a series of mad adrenaline rushes. ;))

I was in the deepest of valleys,

yet I was experiencing God in the most real and tangible ways for the very first time.

He was so incredibly present,

palpable at times.

And I believe He had always been there, patiently waiting in the wings.

Only it wasn’t until fear gripped me and I lost my own footing,

that I sought Him out and finally drew close enough to Him, to a place where I could really examine and begin to understand His character.

This trial I was suddenly plunged into, would become a series of encounters with an amazing God.

We would travel together through those darkest of days.

Him patiently, gently, compassionately walking along beside me.

Him showing up time and time again.

Giving me hope in the passage of a book when seizures returned.

Teaching me to trust through a fiery tractor-trailer accident.

Encouraging me through friend’s stories.

Strengthening my faith with a miracle.

Providing doctors, insurance, deductibles, premiums, and lodging.

Loving me, when I didn’t deserve it.

Comforting me in a hospital lobby when impossible decisions needed to be made.

Granting peace about the hemispherectomy.

Protecting us from medical mishaps like a misplaced BP cuff in the ICU.

Leading me on the path He set before us, moment by moment.

Carrying me when I completely surrendered and could no longer walk.

Correcting my stubborn, self-reliant ways.

Strengthening me in my weakest, I-can’t-go-on moments.

Guiding me through the maze of medical options and uncertainty.

I  learned that God is absolutely faithful to all of his promises.

He is who he says he is.  He never leaves nor forsakes.  His love is perfect.

But as I sift through the many details of our journey, I question whether God’s presence would have felt as real or as substantial to me, without His willing servants.

Do you understand what I mean?

God used obedient and available individuals, as His hands and His feet, literally rallying them around our family in support and love.

They showed up with a home-cooked meal.

They took our older kids out for pizza and bowling.

They sent gifts and handed us money.

They cared for our kiddos when we couldn’t.

They prayed with us and sent care packages.

They called and crafted emails.

They mowed our lawn and decorated our house.

They crocheted blankets and waited with us.

They bought us dinner and delivered cookies.

They followed our blog and traveled hundreds of miles to show their support.

They made me cry many times over.

They were the body of Christ, sacrificing and serving.

They glorified the Father by putting themselves last and others first.

When these servants appeared, He appeared.

There really is no separating the two.

Allow me to retell one of my favorite examples of His provision.

An amazing story of God working out the details through willing, generous individuals, who put a needy family first:

Our 20-month-old daughter was experiencing countless daily seizures that were destroying her chances of normal development.  Medications failed to irradicate the nasty electrical storms.  We brought her to New York City in search of the best doctors.  She had exhaustive testing completed and we learned she was a candidate for a radical three-stage brain surgery.  She needed to complete all pre-op testing at least one week prior to the surgery in Manhattan and we’d need to plan on staying in the city for a total of one month.

The challenge at this point was finding an affordable place to stay in New York. Duff and I would need a place to sleep and shower between shifts in the hospital’s PICU. An organization called FACES offers free apartments to epilepsy patients but they were booked until September. The Ronald McDonald House in Manhattan focuses primarily on pediatric cancer patients, I did contact them, as well as a social worker, to see if they might consider taking us in. We looked into sublets which were wicked pricey at 4,000-5,000 for the month. We also received a list of more affordable accommodations which didn’t turn up any possibilities. We moved ahead with our plans knowing our daughter needed this surgery and were really not too worried believing that God would somehow work things out.

We traveled to my parent’s house in CT where we would stay until the first phase of testing was complete.  Meanwhile everyone we knew began corresponding with friends and family in the NYC area.  It was so wild and unexpected.  Duff received a phone call a few days prior to our hospital admission date.  It was our friend, Rani Foscue, calling from Clayton, NC.  She had been in touch with her cousin, Robert Sean Leonard, an actor who was presently filming ‘House’ on the West coast.  He had a fully furnished apartment sitting empty in Manhattan, just a few blocks from the hospital. He was willing to let us use it for the entire next month, free of charge.  He had never met us, yet he was going out on a limb to help a family in a very tough spot.  I was in complete awe over the way God had worked out all the details.  We had a quiet retreat for sleep, a shower, a washer/dryer, and it was all in a most-convenient location.

But I have to wonder…

What if Rani never made that call?

What if Robert turned the other way?

What if his parents weren’t willing to work out the logistics of getting us the keys?

What then?

Friends, allow me to introduce you to the Joyner family.  I first made their acquaintance through an email sent out by JCHE- a homeschool organization.  They live in Selma, in a modest, older home in need of many renovations.

Tracy and her husband James have nine children.  James was diagnosed over a year ago with Hodgkin’s Lymphoma and underwent radiation treatment. Recently it was discovered, through tests and biopsies, that the cancer has returned very aggressively throughout his body.  He is about to complete his sixth chemotherapy treatment tomorrow and will learn the results of his most recent CT scan.  Doctors are discussing the possibility of an autologous bone marrow transplant as the next step.  During treatment at Duke, James would need to live off campus in Durham and have a 24-hour caregiver.  The duration of his stay could be from 6 weeks until only the Lord knows when, depending on his response to treatment.  Insurance has already approved the transplant and will provide a spending allowance for James’ daily lodging.

The only question on James’ mind is, “How can my family be up here with me?”

Tracy says, “We know that a plan is already mapped for the journey, so please pray with us for direction.  Please do not hesitate to pass this email along to anyone that knows someone who has already been through this and could direct us to the resources that can help with financial and lodging needs for a family of 11.”

Lord,  Use me.  I am available.  I am willing to be your hands and feet, that you may work out every detail of your perfect plan for this dear family.  Direct my steps.

If you have any friends or family living in the Durham area, who might be able or willing to help this family, please contact me so that I can put you in touch with Tracy.

 Christ Has No Body

Christ has no body but yours,
No hands, no feet on earth but yours,
Yours are the eyes with which he looks
Compassion on this world,
Yours are the feet with which he walks to do good,
Yours are the hands, with which he blesses all the world.
Yours are the hands, yours are the feet,
Yours are the eyes, you are his body.
Christ has no body now but yours,
No hands, no feet on earth but yours,
Yours are the eyes with which he looks
compassion on this world.
Christ has no body now on earth but yours.

Teresa of Avila (1515–1582)

This was our first year participating in Dreams on Wings as ‘Team Gabby Faith’.

We were running to celebrate our miracle daughter, Gabrielle, who underwent a right hemispherectomy almost 6 years ago.

We were running to celebrate the amazing 4 1/2 years of seizure-freedom we’ve been given and all of her accomplishments that have come with that.

We were running to raise awareness of this radical brain surgery and to support the Hemispherectomy Foundation, an organization that does so much for these special individuals and their families.

Many of our dear friends and family registered as virtual runners.  Thank you!  We appreciate you so much!

Then, because we don’t live anywhere near TX or NH, we had to make a decision:  Would we actually run or just proudly wear the t-shirt as pretenders?

We decided to mark out a 3.1 mile loop at a local park and do the deed.

We only had 6 runners this year and a fine group of cheerleaders who really did wonders in spurring us along.

Seeing my Gabby bouncing up and down like a string bean as I approached the 2-mile mark, definitely helped me to press forward.

While running along the bottom stretch of that trail (seriously tempted to walk), I found my mind flashing back to that hospital room 6 years earlier.

My child is awakening from a very deep sleep, face swollen, a white bandage wrapped securely around her head.

Her eyes slowly open and I carefully watch, looking for the slightest eye flutter or facial grimace. I exhale heavily realizing I’ve been holding my breath. I’m holding onto hope with all of my being, afraid to allow even the air to escape from my lungs. Wondering if this surgery, with all of its sacrifices, will be the miracle for which we’ve been searching.

I carefully observe the affected side, looking for movement, hoping those chubby little fingers will begin to miraculously wiggle despite what I’ve been told and understand.

My child struggles to sit up straight without collapsing to one side, she fights nausea and raging fevers.

She is so brave.

My child is fitted with an orthotic and forced out of bed.  It’s time to learn how to stand on two feet and walk again. The work is grueling. It takes everything she has. She returns to that hospital bed, drained after hours of challenging therapy, and somehow she manages a weary, crooked smile.

Her mouth is all drawn up on one side and the corner of her eye crinkles down to meet it.

My child is such a fighter.

She has courageously taken some of the most difficult steps in this world.

When everything was numb and pins and needles, she stretched her leg outward in trust.

When half of her visual field was blurry darkness, she turned into it, facing the unknown.

My Gabby Faith learned to run again with a leg that doesn’t fully do its job and an arm that often fails to break falls.

Our Hemi kids have fought for everything they have.

Surely I can run 3 miles.

And finally I cross over the word ‘Finish’ written in orange sidewalk chalk.

I’m surrounded by friends and family who have shown up at a ridiculously early hour on a Saturday morning.

People who have walked along side our family every step of the way.

Folks who were there at the bleakest hour and remain beside us as we’ve celebrated every miracle since then.

Thank you for encouraging us at each and every milestone.

Thank you for encouraging us today, that perhaps this first small race is the beginning of something bigger.

I look forward to seeing and experiencing all of what God has in store for my girl and our family.

We’ve had an amazing physical therapist working with Gabby for the longest time now.

She’s very good at what she does.

She’s smart.

She’s knowledgable.

She’s energetic.

She’s fun.

She’s creative.

She’s kind.

She’s optimistic.

She’s patient.

She’s firm, but fair.

She’s everything a pediatric physical therapist should be.

But do you know what makes her irreplaceable?

Her compassion and dedication.

The way she gives a hug.

The way she laughs and smiles.

The way her eyes are moved to tears.

All the many ways that say she truly cares about the kids she treats.

Her heart is in her work.

That’s what makes her irreplaceable.

When Betsy let us know that she would be moving out-of-state, we were selfishly quite sad.

I explained to Gabby that she would be relocating far away where her husband got a new job.

“You mean her brother?” Gabby corrected.

I was amused.  Gabby has failed to accept for some time that her favorite therapist actually lives a meaningful life outside of her office.

I personally believe it is some kind of coping mechanism.

You know, in which she tries to guard herself from the possibility that her friend Betsy might actually have loving relationships with people apart from her.  

So I once again reminded Gabby that Betsy is married and has a life.  I explained that she is moving to God’s country, a very picturesque place full of natural beauty.

I told her how much I thought Betsy would enjoy it there, because she’s a very active, outdoorsy person.

I explained we would need to say goodbye and perhaps we could pick out a special going away gift.

Gabby knew at once that we just HAD to get Betsy a picnic basket.  I was floored.

I was floored that Gabby had come up with something on her own that I thought would be so perfect.

The perfect thing to say so long to someone who has been instrumental in advocating for and promoting Gabby’s independence.

We feel so blessed that we’ve had the opportunity to work with Betsy over the last five years and we will miss her bunches.

Selfishly we hate to see her go, but at the same time we are thrilled for her as she begins this new chapter.

We wish you the very best, Betsy, as you embark on this wonderful adventure.

This is a clip of Gabby doing her best “Princess Walk” for Betsy in which she tries to walk smoothly using a heel-to-toe pattern.

If you think Gabby looks proud in this video, you should have seen Betsy’s face.  Loved the way these two worked together.