Six years ago, before my sweet baby girl had her first seizure, I would have told you that I understood epilepsy.

But… boy would I have been wrong.

I was a trained nurse.

I could have shared the textbook definition of a seizure, how to appropriately respond, and may have even rattled off a few anticonvulsants to seal the deal.

I might have regurgitated that epilepsy is a disorder in which a person experiences recurrent seizures.

But… I didn’t really understand epilepsy.

Continue reading “Purple Day” →

Okay, I will admit, I certainly ended that last post about “Playing Catch-Up” pretty abruptly.

It’s just that I suddenly realized everything spilling forth from my brain would never “fit” into a single post, without intensely torturing some of my dearest friends and family.

So I broke it down into two, but then didn’t have any remaining energy to tie up all the loose ends.

Forgive me.

The giant flash cards were scrapped, we had many fun summer adventures, and I sat down in early August to plan for the upcoming school year.

I decided to use Sing, Spell, Read and Write for Gabrielle’s first year at home.

I chose this curriculum for a few reasons:

1) I have used it successfully with several of my other children.

2) It is a very thorough phonics-based approach to reading.

2) I knew Gabby would appreciate the mulitsensory approach which includes colorful pictures, games, and songs.

We warmed up first with a full review of the alphabet.

We practiced letter formation and made certain she was rock solid on all her basic phonics sounds.

She colored…

cut,

glued,

and traced.

She practiced writing “Gabby” at the top of every worksheet..

Most days, she was very eager and willing to complete her school work…

but occasionally a hurdle like the letter ‘K’ would leave her with tears of frustration streaming down chubby cheeks.

Of course my dear friend Julie shared a little rhyme that she used with her girls when forming the letter ‘K’, and it really turned Gabby’s attitude around:

“Start at his head, pull down to his feet.  Then Kick him in the belly and he’ll kick it out.”

Fine motor tasks can still be a struggle for my sweet girl, but  I decided not to dwell on the difficult and instead move forward with her strengths.





She mastered all 26 phonic sounds and was ready to begin blending them into words.

Now I know even with my typical children that this step in learning to read can be a challenge.

They’re juggling all these sounds in their heads and they need to quickly associate the correct sound with the right symbol, all the while listening for the word that the abstractions magically create.

I was pretty much dreading moving forward into this stage.  It was as though I was expecting problems.

I knew my patience would be tested.  I knew her determination would be tried.

I asked for prayer and was really blessed by the reminders that I in turn received.

One sweet friend replied…

“Of course, as you would agree I’m sure, each kid has their thing that I KNOW God specifically placed in them to teach ME big things, dying-to-self things.”

Wow, I reflected, of course.  God is using this very circumstance to teach me, to refine me.

I stopped looking for upcoming roadblocks and instead focused my attention on pouring love and encouragement into my sweet girl, and trusting Him.


We began learning “The Ferris Wheel Song” from Sing, Spell, Read, and Write.

It familiarizes your child with simple consonant vowel blends using music:

She learned the song quite easily but was having trouble carrying the blends over to sounding out simple 3 letter words.

She would say each sound independently in the word  c-a-t, but was unable to combine the sounds into a word she recognized.

She would sound out  c – aaaaaa – t and then say, “Sit!”

I recalled another one of my children having a similar struggle.

I remembered the approach used in 100 Easy Lessons had really helped my other child, so I added this to our daily to-do list.





In this program the child is instructed to enunciate the word slooowly, as they touch underneath each letter sound.  Then they go back and say it fast.

This concept of saying words slowly and then saying them fast is rehearsed throughout many of the early lessons. It took Gabby a couple of days to really grasp this idea, but once she did, we were off to the races.

One of the coolest things about homeschooling is that you can progress at the perfect pace for your child.  There is no “ahead” nor “behind”.


So we are presently 1/4 of the way through this book and we still have days when one or two words trip her up. She’ll say each individual phonics sound correctly but then struggles to blend them into a word.

It is very frustrating for both of us.

Just recently we hit a big, ugly wall.

It involved the 3 letter word S-A-D.

She would sound it out perfectly and then when it was time to say it fast she would shout out any word that popped into her head.

I refused to yield. I knew she could do this.

It took 30 minutes of persevering. No lie.

While I tried to remain calm and patient in my efforts with Gabby…

Logan engaged in all-out body art with the markers.  I replaced the markers with a bin of crayons.

He decided a game of 199 pick-up was in order, scattering them all over the kitchen floor.

It was then that the bowl of goldfish was accidentally sent flying off the edge of the table.

Makinley stood beside me expecting praise for her latest masterpiece and there was an argument that needed to be settled.

I grew increasingly frayed…

but still I waited for Gabby to recognize the word she was sounding out.

It was like an intense game of Mad Gab.

She stalled and attempted to distract me from the task at hand.

Her antics were so far-fetched, they were almost humorous.

But I was ALL in, fully invested, there was no turning back now.  I would see this thing through to the end if it killed me.

This was one of those situations where extreme stubbornness pays off. 😉

And when that tiny,

one-syllable word,

finally rolled across her lips…

and her eyes lit up in recognition…

we both needed a nap.

She truly did scamper off to her bedroom, without instruction, and slept for several hours.

I on the other hand grabbed a second cup of coffee and relished this one small victory.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. – 2 Corinthians 12:9

Gracious, I don’t know where the time has gone!

Some days I’m honestly very confused about what I do all the livelong day!

When you have only a bigger pile of laundry and more dirty dishes to show for your efforts, you begin to wonder!

One time in particular, I was so confused by this phenomenon, that I challenged myself to write everything down for a 24 hour period.

Boy, was that ever an eye-opener!

I most assuredly determined that I do not in fact sit around eating bonbons all day without being aware of it.  😉

My children would interject at this point, what in creation is a bonbon anyway??

Which would make me laugh…and make me feel old all at the same time.

<Grin>

But….despite my excuses and inability to pinpoint exactly why I have once again failed miserably at keeping this blog up-to-date, there is soooo much to share.

I’m really not sure where to even begin.

I guess back in April we made a big decision to homeschool Gabrielle.

It was not an easy decision and certainly not one I took lightly.  I feared flying solo and half-blindfolded, with a special needs kiddo, into unchartered territory.

Scary.

But one evening, just when I had grown more confused and frazzled than ever before about whether to send Gabby to kindergarten or keep her at home with me…

God struck me upside-the-head with an amazing realization.

Who better to teach this little miracle…

and train her up in the way she should go?

Who better…. than her mother?

So it was, that very evening, a decision was made.

And I must say, I have received confirmation, after confirmation, from the most unlikely people, in the most unexpected places, that it was the right choice for my child.

I mean just a few weeks ago, the man installing my dishwasher, gave me renewed peace about the situation.  God works in the most mysterious ways. Truly!

This is NOT to say the going is always easy.  See my Unglued post if you don’t believe me.

Gabrielle finished up preschool at Dixon Road Elementary School in the beginning of June.  She was in a mixed classroom with both typical and special needs kiddos.

Here is my little graduate on her last day…

Here she is heading out with her little sis to the graduation celebration…

Gabby and her classmates performed a few songs for all of us.

Gab was too busy smiling at me to sing! Aren’t they adorable?

My little preschool graduate…. she won “Best Smile”

and I can’t imagine why. 😉

 

We enjoyed refreshments and said goodbye to friends…

and all the while I wondered how my Gabby would adjust to leaving the classroom experience behind.

Would she miss it?

Would I miss it?

Of course I knew I would have to wait a bit to find out because we were about to enjoy two full months of summer fun.

We dropped quarters into ride slots…

We hit hot tubs, pools, and spray grounds….

We attended story time…

We visited family and the beach…

We toured museums…

We had an absolute blast!

And like all teachers…

the week before school was supposed to start up again, I panicked over how little I had accomplished during summer break.

I’d had such high hopes when school let out…

Speaking of high hopes….

In case you’re wondering whatever became of the hundreds of giants flashcards I created…

 

Well…

they’re presently collecting dust in several different locations throughout my house.

Why, you ask?

Because I simply find it too disturbing to properly dispose of them.

They are resting in purgatory, if you will, awaiting their fate.

Seriously though, I spent hours creating those dern things.  I suffered back spasms from measuring and cutting all that poster board in awkward positions.

We used them for a sum total of about 4 months.

It was a daunting task.

The challenge of presenting 5 flash cards, 15 times a day, separated by 15 min. intervals, simply became too much for this household to handle.

I missed a day…

And then forgot to bring the cards with us on a day trip we made to the aquarium…

Two days turned into many…

I seriously questioned whether it was worth getting back on track.

Initially, Gabby seemed to be mastering the cards, but as the  sample size increased it became apparent that she really only recognized the first several letters of each word, so that, as we added additional words, she began to confuse them.

The program did warn that children who are already familiar with the alphabet may struggle to see the word as a single unit rather than a summation of smaller parts.  This was true for my girl.

So with much guilt I scrapped the How To Teach Your Baby To Read and looked forward to trying a more phonics-based approach when we kicked off our homeschool year in August.

Do me a favor, won’t you?

Go open up the door to your medicine cabinet and tell me what you see.

Does it house Tylenol and Motrin?

Some cold remedies?

Vitamins?

Perhaps a package of Benadryl or allergy medicine?

Maybe some basic first-aid supplies?

For many years I had an ordinary medicine cabinet, half-filled with common household remedies.

I went about my life never really acknowledging that small, unremarkable space.

Never pausing to give thanks.

 


Then all at once my medicine cabinet changed.

Suddenly it was packed to overflowing with prescriptions.

Plastic containers, bottles, syringes….precariously stacked, one on top of the other.

And one day as I cautiously opened that cupboard door, prepared for the avalanche, I was struck with the realization that for years I had taken my half-filled medicine cabinet for granted.

I had never fully comprehended what I had.

Never fully appreciated the freedom that comes with good health.

And now I found myself in a very different place.

I had a sick child.  A very sick child.

I was tied to hospitals and doctors.

Pharmacies.

Therapists.

An insurance policy.

I began to wonder if spontaneity had become a thing of the past,

if I would ever experience those happy-go-lucky days again.

My life had become a series of adrenaline rushes intermixed with deep pits of nausea.

The burden weighed heavily upon me.  I was living a bad dream that I could not wake from.

Then on September 14, 2009, exactly three years ago today, I walked beside the gurney carrying my almost 3 year old daughter into the operating room.

She was about to undergo a fifth brain surgery to stop the catastrophic epilepsy that threatened to rob her of a normal life.

I kissed her goodbye and went over some final details with Dr. Weiner, the pediatric neurosurgeon.

I later returned to the family waiting room where I wrote the following words on my daughter’s blog:

This is it. This “redo” will be our final attmpt to stop Gabrielle’s seizures. I explained to Gabby that, “The doctors just need to make a “boo-boo” on your head to stop the seizures and then we’ll go visit Mimi and Pop.” I hope and pray that this is in fact the case.

I have learned a lot about faith over the last two years.
Faith in the midst of suffering. Faith in the midst of heartache. Faith in the midst of death.
Faith when God’s will is carried out instead of my own.

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.


I hit the publish button on my blog with a trembling hand… and then the waiting began.

Waiting for updates from the OR.

Waiting for Gabrielle to be wheeled into the PACU.

Waiting for God to reveal His will for my daughter’s life.


Now I don’t know why God chose to lift this burden from our lives, I’m only thankful that He did.

Today, we celebrate three years of seizure freedom.  THREE YEARS!

And I’m reminded to make the most of it…


Date your hubby while you can.

Take spontaneous trips and visit new places.

Do cartwheels with your kiddos.

Go whitewater rafting.

Experience family camping.

Jump in the car and go somewhere…

Do something…


WHY?


Because you can.

Because tomorrow isn’t promised to any of us.  Not one.


Love with wreckless abandon.

Embrace life with everything you have…

because none of us wants to finish up our days here on Earth with regret.

Because one day when you open up your medicine cabinet…


things might look very different.

I was with God.

Not in a physical sense, but in a spiritual one.

He was asking those questions that He so often poses throughout scripture.

You know, the questions He obviously already knows the answers to, but asks anyway.

Hoping that you will take a moment to reflect upon your need for Him.

Do you trust me?

Yes.  (I mean it. My heart fills with the warmth of certainty.)

Will you surrender yourself to Me?

I will.  I do. (I release the last of my lingering grasps on earthly things.)

My body experiences an immediate weightlessness.

My fears are  lifted.

My anxieties disappear…

until only peace remains.

Peace mixes with the warmth of certainty, overwhelming my soul, threatening to burst forth from my chest.

My feet begin to leave the ground.

I’m floating.

Do you trust Me?

Yes!

Surrender yourself to Me.

I will.  I do!

Now, I’m flying!

My faith grows stronger still.  I’m lifted further.

Realization strikes me…

The height of my flight is directly related to the depth of my belief.

I glide through the sky, never having felt closer to Jesus.

Joy.  Complete Joy.

I am whole.  Fulfilled.  Lacking in nothing.

My feet return to the ground, and I want to shout from the mountains.

I race to the home of some very dear friends.

Faith-filled friends.

Believers who trust and strive to surrender.

I tell them about my flying.  I want them to know the joy and exhilaration too.

We find ourselves outside on their deck, standing atop the railing.

Surrendering ourselves…completely to Christ.

We let all of it go.

Pain.

Guilt.

Worry.

Anger.

Strife.

We give it over to Jesus.

We trust Him completely, to be King of our lives.

Our feet leave solid ground behind.

We begin soaring…

to entirely new places.

Places that can be reached only through the weightlessness that comes from faith.

I had this dream in September 2009.  We were preparing to head to New York for Gabrielle’s fifth brain surgery.  I was anxious, doubting, questioning whether I could put my precious daughter through yet another surgery.  Surgery, with all of the risks and complications it can introduce. A surgery that would not necessarily promise freedom from seizures.  Days before we left, I awakened from the this dream.  It was so real and left me completely faith-filled.  Every doubt eliminated.  Every speck of unbelief erased.  I had only complete peace.  Complete serenity.  I was anxious for nothing.  Faith-filled to the very top and overflowing.  I was given a taste of God, a closeness never before experienced.  A vision of His magnificence, to carry with me behind dreary hospital walls. 

I’ve been trying really hard to make a big decision.  

I’ve been praying for a very clear answer. 

I’ve been talking through it, with anyone who will listen. 

A decision that will affect a beautiful five-year-old little girl who underwent a hemispherectomy for intractable seizures.  A decision that involves a spunky, blue-eyed angel, with left hemiplegia, who always manages to make me smile.  

A decision that will dictate who teaches this precious, special needs child how to read. 

A decision that will determine her daily influences, select her classmates, and establish her schedule five days a week.

For the last 2 1/2 years, Gabby has participated in the Exceptional Preschool Program at the local elementary school.  She attends three mornings per week, half-days, in a mixed classroom of about 12 students.  She has a wonderful teacher and a fabulous teacher’s assistant.  She loves her friends and really enjoys classroom activities. Gabby receives OT and PT services, weekly, on the school grounds.

 

Preschool has been a positive experience for Gabrielle.  She has been pushed and challenged to improve in many vital areas.  School has boosted Gabby’s confidence, increased her ability to function independently, and strengthened her communication skills.  Gabby’s fine motor skills are taking off and she is now forming letters.  She participates in circle time, follows instructions, and interacts appropriately with her classmates.  

 But preschool cannot last forever.

 

And as May approaches…

 

we have a decision to make.

 

What to do about next year??

 

Gabby is being recommended for a standard Kindergarten classroom averaging about 22 children.  She would attend school five full days a week and continue to receive services. Gabby would be pulled for extra help by the special needs teacher at her school.  This teacher happens to have a daughter of her own, with left-sided hemiplegia, who’s now in middle school.  She is all too familiar with the challenges that lay ahead of us.  This teacher offered to meet with me (out of the kindness of her own heart) and Gabby’s current teacher, to see if she could help make my decision any easier. (Incredibly nice, right?)  

I left that meeting more confused than ever. 🙂  

 

I arrived home with my head spinning.  Overwhelmed. 

Five days a week. 

Five full days a week. 

No exceptions, unless you have a medically fragile child. 

All or none. 

None or all.  

 

I asked Duff for insight.

“We would never see her.  She would be the family outcast.” 

Leave it to Duff to cut through to the very heart of the issue.;)

 

But seriously, he did.  

With those words he pierced this momma’s heart.  

 

He cut through all the uncertainties and insecurities… 

 

I’m not equipped.

I’m not trained.

I already have so much on my plate.

What if she has learning disabilities?

I’ll fail her.

It will be too hard.

I’ll be depriving her of what’s best.

I’ll limit her potential.

I’ll foster dependency.

I won’t push her hard enough.

 

directly to the part of my being that houses the deepest of loves for Gabby.

 

The part of my being that grew sick with nausea the first time my baby doll’s eyes rolled to the back of her head.

 

The part of my being that pleaded to be taken away from this earth rather than watch my child suffer.

 

The part of my being that sobbed as I washed the vomit away from her listless body after yet another medication had failed.

 

The part of my being that celebrated the miracle of a day without seizures.

 

The part of my being that researched epilepsy treatment into the wee hours of the morning.

 

The part of my being that flew her into New York in search of the best doctors.

 

The part of my being that slept upright in hospital chairs.

 

The part of my being that went 7 days without a shower.

 

The part of my being that spent months in the hospital.

 

The part of my being that would do it all over again.

 

All of it.

 

Because this part of me houses a love, that only a mother/father can know and understand.

A love that has patience when frustration seems the only choice, courage in the midst of trembling fear, perseverance against all odds, and sacrifice when there’s nothing left to give.

And this part of me wondered…

 

Who better to teach this little miracle…

and train her up in the way she should go?

 

Who better…. than her mother?

And so with much prayer for strength, patience, courage, endurance, and a self-sacrificing love, I will set my mind to the task of homeschooling my dear, sweet Gabrielle Faith.

Let me begin by mentioning how thankful and blessed I feel to be broaching this topic here on Gabby’s blog. If you know Gabrielle’s story, then you know how we painfully surrendered the expectation of a normal future for our little girl many times over.

I surrendered the expectation that my child would crawl, and walk, and talk. I surrendered the expectation that my child would feed herself, be potty trained, and climb in and out of bed.

I remember telling a few dear friends of mine (as I detailed the heartbreak, the miracles, the struggles, and the triumphs on this blog) how it had really become a dream of mine that Gabrielle would one day be able to *read* this blog and understand the amazing ways God had worked in her life.

As I shared this hope, I recall my eyes brimming with tears. The tears threatened to spill forth because I knew it would represent another miracle.

Another miracle I was frightened to hope or wish for. A milestone that could mean future independence. A milestone that would open so many doors to a bright and fulfilling future.

My Gabby, arriving at a place where she could read and understand written English, a miracle for sure.

So here I stand at the crossroads, about to embark on this journey, wondering if this will be part of God’s plan for my sweet princess, or not.

In trying to prepare and research the best approach, I accessed something that was filed away deep in the recesses of my mind.

I recalled reading somewhere, surely on another mom’s blog, how children with brain injury often learn best using a sight word approach in the first five years of development.

Upon googling, I immediately came across two books by Glen Doman: How To Teach Your Baby To Read and What To Do About Your Brain-Injured Child.

I was so anxious to read the books and get started, that I forgot to order kindle editions. Two days later my paperback books arrived, which I shall forever cherish as collector’s items, or more likely pass onto another mom. 😉

I began reading How To Teach Your Baby To Read first, and found it to be very informative, logical, and exciting.

I taught my four oldest children to read using the phonics approach, and therefore I’m pretty familiar with the tedious struggles that it can introduce. It takes a lot of juggling and perseverance for the typical five year old to master all the different sounds and rules, in order to become a successful reader.

This book is inspirational because it argues that a child can grasp the written word, just as easily as the spoken word, if it’s introduced correctly and at the appropriate time (ideally in the first five years).

Heck, I thought, I can teach my three youngest to read simultaneously. And I was off….

Watch out world! I ordered a giant box of bold-tip red markers and a life-time supply of poster board, which arrived today. I’m ready to get started and will surely let you know how this goes.:)

As far as Glenn Doman’s other book goes, What To Do About Your Brain Injured Child, I’m half-way through and it is wow. Just wow. Now mind you, I studied psychobiology/neuroscience for my college major, so I’ve always found this kind of stuff interesting. But people, this book is completely fascinating.

If you have a brain-injured child, it’s a must read.

Are you treating the symptom or the problem itself? That’s all I have to say.

Right now I’m off to make flashcards. Lots and lots of large flashcards, with red bold print.:)

Goodnight.

Being the mother of a special needs child can be challenging.

It can be exhausting.

It has many, many amazing rewards while at the same time it can be so very difficult.

Your child needs you in every way a typical child does in terms of meeting their basic needs, structure, discipline, and sharing time together, but there is also so much more.

Medical appointments, medication, developmental delays, therapy, orthotics, stretching, exercises, IEPs, and research, can consume a great deal of your time and energy.

The additional responsibility of being you child’s advocate, consistently fighting for what your child needs to excel, can be daunting.

Mom guilt abounds in an entirely new way.

Did I cause this?

I didn’t do her exercises today.

We forgot to stretch lefty.

I didn’t let her struggle to dress herself.

I enabled her at the dinner table.

She’s running around barefoot instead of wearing her braces.

We haven’t practiced handwriting.

The constant struggle of discerning when to help and when to stand back and let her struggle wears me down.

And then you find that person who helps shoulder the load.

A person who listens to all your worries and concerns.

A person who helps you navigate this life with a special needs child.

This week we took a moment to thank that very special person for everything she does to help our Gabby.

Below is the letter I wrote (from Gabrielle’s perspective) to our very favorite Physical Therapist (Betsy Murphy) at Abilitations Children’sTherapy. http://www.actwc.com/

Dear Betsy,

I love you. I like your hugs and kisses. I love how you always have a smile on your face. I have lots of fun playing games with you every week. I know that sometimes you make me work very hard so I can get stronger and do things for myself. You are good at figuring out when I’m being silly to avoid doing my exercises. I sometimes hear you trying not to laugh at my antics. You do a great job of pushing me. I know you really want me to grow up to be the very best I can be.

My mommy loves you too. She says you are the best therapist around. She says you don’t help children like me just for the money. Mommy says you really care. Mommy thinks being the parent of a special needs child can be challenging. But she told me that you make her job soooo much easier. She thinks you’re a wonderful advocate for me. You even know how to wipe away “mom guilt”.

Mommy and I want to thank you for everything you’ve done to help me become a confident and independent little girl who runs, jumps, climbs, and soars to new places every year. You are amazing!

Cutely Yours,
Gabby O’Melia

Today I am raising an Ebenezer.

I am placing a stone, as Samuel did, to mark the place where the battle was won.

A stone to mark the place where victory was achieved with the Lord’s help.

I’m placing a stone to remind me of God’s faithfulness.

A stone to remember those darkest days of sorrow.

A stone to acknowledge the power of prayer.

I am placing a stone to express gratitude. A profound thankfulness for a fresh beginning.

I am placing a stone because we humans are forgetful. Time passes and the amazing intricacies of what God has done in our lives begin to fade. The details blur and grow fuzzy.

We begin to forget that we serve the same amazing God of the bible. A God of miracles. A God of love and mercy. A God who will never leave us nor forsake us.

I am placing a stone to mark 2 years of seizure freedom for our beautiful Gabrielle.

Then Samuel took a stone and set it between Mizpah and Shen, and named it Ebenezer, saying, “Thus far the LORD has helped us.” —1 Samuel 7:12.

I could not possibly express this challenge any better than Charles Spurgeon did below.

“It is certainly a very delightful thing to mark the hand of God in the lives of ancient saints. How profitable an occupation to observe God’s goodness in delivering David out of the jaw of the lion and the paw of the bear; his mercy in passing by the transgression, iniquity, and sin of Manasseh; his faithfulness in keeping the covenant made with Abraham; or his interposition on the behalf of the dying Hezekiah. But, beloved, would it not be even more interesting and profitable for us to remark the hand of God in our own lives?” -C.H.Spurgeon

What has the Lord done in your life???

I can’t believe how long it’s been!! I completely disappeared for months! It all started with frequent hunger. Then nausea, extreme fatigue, vomiting……

And you guessed it- Preggers!

I don’t function well when I’m pregnant. I feel really sick for the first few months. Stomach flu sick. Then the fatigue and baby brain settle in, rendering me completely useless.;)

All things optional are thrown out the window, including blogging of any kind.

But, I’m back! And all the difficult days were entirely worth it! Gabby became a big sister in March, to a new baby brother named…

Logan Robert

He is the sweetest little guy and we all just love him to pieces!! Such a precious gift!!

Gabby has been very good with baby Logan for the most part. She does have her moments…but don’t we all?? 🙂

Where do I even begin to catch you up on everything going on with Gabby?!

Let’s start at the very beginning:

Two.

Pink.

Lines.

A positive pregnancy test and you add another face to the family portrait. You mentally install another carseat in the maxed out mini van. You set another place at the table. You order another stocking to hang from the mantle.

From the moment you discover that a new life is being knit together, expectations abound.

You hear the galloping heart beat and see four tiny limbs fluttering about. Your child is running on the playground; chasing after a soccer ball.

You learn the baby is a girl. She’s dancing, twirling, tossing her hair through the air. She’s pushing baby dolls that quickly turn into grandchildren, as your vision speeds through all the wonderful years ahead.

Your daughter is born with ten tiny toes, chubby cheeks, and bright blue eyes. She’s taller and thinner now…all in white, carrying a beautiful bouquet.

Your sweet girl is cooing and smiling at you. What will be her first word? When will she crawl?

Your baby is peacefully nursing and suddenly,

without warning,

every expectation is erased.

Seizures. Catastrophic Epilepsy. Medically Refractory. Cortical Dysplasia. Brain Surgery. Mental Retardation. Dependence. Mentally Delayed. Physically Challenged.

The labels are numerous.

You’re mourning the loss of the child you had imagined. The child you had expected.

You bargain, you question, you beg…

And God responds:

Trust Me. All things work together for good to those who love Me, to those who are called according to My purpose.

Lord, I believe; help my unbelief.

You surrender it all. Every hope, Every dream, Every assumption. The slate is wiped clean.

But Lord, How can this be good?

Be still and know that I am God.

Lay down your pen child. I am the Author of this story

And now, four years later, you begin to see the beauty of a slate that has been wiped completely clean.

You begin to see the beauty of surrender.

Because as promised, a good and wondrous thing happens…

Gifts.

Everything becomes a gift.

And here are the amazing and wonderful gifts God has chosen to fill our precious Gabrielle’s slate with:

– Gabby is the sweetest, most affectionate little girl.

– She’s so quick to smile and laugh.

– She LOVES books.

– She’ll find a bookshelf and sit in front of it for hours flipping through pages.

– Gabby loves: macaroni and cheese, cereal, pizza, yogurt, cheese and crackers, apples, chocolate milk, sweet tea, chicken nuggets, grilled cheese, and SUGAR! Anything else is risky.

– Gabby has 4 “best friends” at school.

– Gabby knows her colors, numbers 1-10, alphabet, and shapes.

– Gabby enjoys watching Dora, Caillou, Diego, and Leapfrog.

– She loves playing dollhouse, kitchen, and dolls with her sister Makinley.

– Gabby holds a pencil correctly and is able to make horizontal and vertical lines, circles, crosses, and is working on triangles.

– She’s learning to use scissors with righty and stabilize paper with lefty.

– She’s learning to dress and undress herself but still requires moderate assistance.

– Gabby independently uses the stairs.

– She climbs in and out of a regular twin bed.

– She loves to have her “computer time”, during which she lives on PBS and Starfall.

– Gabby feeds herself and can drink from an open cup.

– Gabby can lower pants and underwear to jump on the potty independently. Pulling them up is more difficult but she’s getting there.

– Gabby speaks in sentences but effort is required to put her thoughts into words. She especially struggles with more abstract concepts.

– Gabby has a stubborn streak. I usually appreciate this spunkiness but it can wear on me. 😉

– Gabby has been seizure-free since last surgery.(9/2009)

– Gabby thinks she owns my iPhone and is quite good at finding her favorite apps.

– Gabby gives the BEST one-armed hug around!

– She says “I Love You, sooo much Mommy” daily.

“Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow.” James 1:17

Gabrielle had a wonderful 4th birthday!

She ate chips without dip and drank sweet tea.

She opened presents….

She was positively glowing.

Even when little Kin-Kin mutilated her castle cake she kept on smiling.

So thrilled to have her family sing “Happy Birthday”.

And tried her very hardest to blow out the candles.

What a blessing to celebrate Gabby’s 4th birthday!

Here is a quick video clip of Gabby’s first impression of the balloon bouquet she received when the music began playing:

Gabrielle turns 4 years old one week from today.

I can’t believe it!

She has been through so much.
We have been through so much.

So many trials. So many miracles.

Obstacles. Accomplishments.

A little life woven together such a short time ago that has touched so many lives.

And none of it will be unredeemed. Imagine that!

To celebrate all the amazing things God has done in and through her life so far, I created the following video:

Here are the lyrics to Selah’s song, Unredeemed :

The cruelest world
The coldest heart
The deepest wound
The endless dark
The lonely ache
The burning tears
The bitter nights
The wasted years

Life breaks and falls apart
But we know these are
Places where grace is soon to be so amazing
It may be unfulfilled
It may be unrestored
But when anything that’s shattered is laid before the Lord
Just watch and see
It will not be unredeemed

For every choice that led to shame
And all the love that never came
For every vow that someone broke
And every lie that gave up hope
We live in the shadow of the fall
But the cross says these are all
Places where grace is soon to be so amazing
It may be unfulfilled
It may be unrestored
But when anything that’s shattered is laid before the Lord
Just watch and see
It will not be unredeemed

Places where grace is soon to be so amazing
It may be unfulfilled
It may be unrestored
But you never know the miracle the Father has in store
Just watch and see
It will not be
Just watch and see
It will not be unredeemed

Summer of 2007: Gabby spent much time visiting doctors, completing testing, and undergoing a right frontal lobectomy at Duke.

Summer of 2008: Gabby spent at NYU undergoing a 3 stage surgery which resulted in functional hemispherectomy.

Summer of 2009: Gabby’s seizures returned bringing us back to NYU for more testing and the completion of an anatomical hemispherectomy.

Summer of 2010: Gabby had fun!!!!

She swam. She played in sprinklers,
spraygrounds, and sandboxes.

She went to the fireworks. She ran barefoot.

She went down a water slide. She enjoyed her cousins’ company.

She jumped on the trampoline. She licked ice cream until it ran down her shirt. She picked blueberries.

She ate homemade pizza in her bathing suit. She ran around playgrounds. She danced to her favorite music.

She smiled. She laughed. She lived, free of wires, bandages, machines, doctors, and hospitals.

Thank you Lord, for this summer.