Hope in One Hemisphere: Team Gabby Faith

Happy 7th Birthday

A child walking around with half a brain…

Who’s ever heard of such a thing?!

Not me.

I studied the brain in college.

I learned about Phineas Gage, a man who survived a horrific accident in which an iron rod was driven completely through his frontal lobe.

I understood how brain trauma affected personality, behavior, memories, speech, emotions, and sensory/motor function.

I read about cerebrovascular accidents and the resulting deficits depending on the location of the bleed within the brain.

I listened to lectures about the use of electroconvulsive therapy for depression, corpus callosotomy for seizures, and we even covered the use of lobotomies in schizophrenic and manic-depressive patients.

Yet I don’t ever recall learning about hemispherectomies.

I mean I suppose it’s possible that I missed my professor’s brief explanation of this radical procedure because a cute guy was sitting across from me in my neuropsychology class, but I honestly have no recollection.

It wasn’t until many years later, when my fifth child was given an earth-shattering diagnosis, that I became familiar with this most-invasive brain surgery.

 

Sleepy Time EEG

 

We were told that our child had epilepsy.

Doctors explained developmental malformations and migrational disorders.

They pointed to an imperceptibly fuzzy area on an MRI of our sweet pea’s brain and labeled it ‘Cortical Dysplasia’.

This was the cause of her seizures the neurologists explained.

Heavy terms were casually thrown around in an uncomfortably small exam room…

Anticonvulsants.

Medically refractory seizures.

Learning disabilities.

Mental retardation.

Global delays.

 

Then the doctors offered the slightest glimmer of hope….

It is possible that this area of affected tissue is localized and that your child may be a surgical candidate.

The area responsible for generating these debilitating seizures could possibly be removed.

So don’t write off college yet, they encouraged us.

This is what we took away from that stark office on the first day of our daughter’s true diagnosis.

 

We returned home and we Googled.

We searched for stories of triumph and victory.

We needed to read some successful outcomes.

Instead we discovered a whole lot of sadness.

Children struggling to talk, walk, eat, potty train…

Children fighting for their independence…

and sometimes even fighting for their life.

 

We were scared.

Our minds visited many frightening places.

The uncertainty of what this diagnosis meant made it difficult to breathe.

We wanted a happy ending so badly.  We didn’t want to sacrifice anything.

We wanted an ending where a tiny piece of pesky brain tissue is surgically removed, seizures stop forever, and our child overcomes every obstacle their diagnosis has set before them.

We wanted our daughter to emerge on the other side of this storm virtually unscathed.

 

I prayed for that ending.  I begged for that ending.  I pleaded with God for that ending.

I obviously struggle with surrender. I often assume I know how things should be written to give God the most glory.

Shame on me.

PICU

He had something else in mind.

As the author of my little girl’s story,

he made the impossible decision to remove one hemisphere of our child’s brain.  A hemisphere that was electrically abnormal and generating countless daily seizures.

This might seem unusually cruel, if you don’t trust His ways and know that He is good.

This might seem quite unfair, if you don’t also understand that when God decided the right hemisphere must go, he removed seizures right along with it.

Seizures that were wreaking havoc on my child’s appetite, development, memories, intelligence, and quite simply…her life.

The day those seizures were halted, is the day that hope was renewed for my daughter’s future here on Earth.

 

Hemispherectomy was not the storybook ending that we longed for as parents.

We had to make devastating sacrifices.

Gabby has left-sided weakness.

She walks with a limp and wears a brace.

She lost half of her vision and the complete use of her left hand.

 

Yet 5 years later I can tell you without hesitation that there is much hope in one hemisphere.

Gabby is 7 years old now.

She has been seizure-free for  4  1/2 years.

P1050525

 

She shares a room with her three sisters.  She sleeps on the bottom bunk.  Princess sheets cover her bed, the more pink and purple the better.

You can often find a pile of 3-4 of her favorite books sitting at the foot of her bed, in case she feels like reading.

She can be quite the hoarder.  Always looking out for her favorite ‘stuff’. ;)

The night brace she wears on her lower left leg has long since been deposited on top of her bureau.

 

She swivels out of bed excited for the day to begin and runs down the hallway with her tell-tale thump.

She waits for me to notice her and then her face lights up.  Her smile brightens an entire room.

She loves a morning greeting and gives the best one-armed hugs around.  She enjoys being snuggled and loved on, although she has almost outgrown my lap.

 

“What do we have today, Momma?” she always wants to know.

 

She flops down in front of the large bookshelf on my bedroom floor, hoping to sneak in a few books before I demand that she gets dressed.

She might run her finger along each and every word or she may just opt for picture scanning.

My girl can read.

Reading

She’s spunky and stubborn.

I tell her to use the potty.  She may or may not obey right away.  She can dig her heels in hard like a mule or be as agreeable and eager to please as a golden retriever.  She wants to know what’s in it for her.  She tests the water.  I love and hate this spunkiness.  I hate it because it’s disobedience and she’s ornery and that requires a response.  I love it because she’s a feisty spirit that has the courage and energy to test me.

Eventually she jumps on the toilet and independently takes care of business.

“Do you want to pick out your clothes?” I inquire.

She can be a tad bit picky in this area.  Finally we arrive at a wardrobe decision.  She undresses and dresses with minimal assistance now, though she does require some verbal instruction and regular reminders to stay on task.  (This is when I get my morning exercise in patience.)

The other day she was having an especially difficult time removing her shirt when she suddenly flopped backwards onto the floor exhaling, “Aargh! I am soooo over this!”

Of course if there’s something really exciting on the docket then she can make it all happen surprisingly quickly.

I stretch her out, put on her socks, stick an AFO on lefty, and then get her into her shoes.  I assist her with toothbrushing and hair styling.  She is usually very opinionated about how she wants her hair fixed.  Although somedays it’s just about getting it done quickly.

Birthday Girl

It’s time for breakfast!  She races down the long, steep flight of stairs oftentimes forgetting to hold the rail because she likes to give her mother a heart attack.  Of course, why hold a railing when you need to transport your favorite new book or toy to the kitchen table?

Breakfast is Gabby’s very favorite meal of the day.  She loves all things carbohydrate.

Cereal, English muffins, bagels, toast, waffles, pancakes, pop-tarts, coffee cake, or muffins?

Yes, please!

She’s open to throwing some eggs, yogurt, fruit, and  bacon in the mix as well.

This girl can pack away some breakfast.  She feeds herself but requires help with cutting anything large into smaller bites.  She drinks from a regular glass and her beverage of choice is chocolate milk or…chocolate milk.

She participates in whatever is happening at the breakfast table.  She laughs, sings, plays games, reads books, and talks in between bites.

“Thanks for making this, Mommy.” she says through a smile of half-chewed pancake.

When she’s done eating, she’ll usually sneak off before I have a chance to mention schoolwork.  When she’s having a particularly obedient moment she’ll ask to be excused first.  I can usually find her playing with her “best friend” and sister Makinley.  They play American Girl dolls, Barbies, Fairies, My Little Ponies, and dollhouse.  They are always off pretending together.

Best Friends

 

Just the other night my Gabby prayed, “And God, thank you for making Makinley.”  I just about bawled.  She can be the sweetest, most loving girl.

I call for her when it’s time to begin school.  She might come running with a smile on her face or pretend she hasn’t heard me.  You never know what you’re gonna get.  She can read, write, and spell words.  She’s doing basic math.  She adores books and really does enjoy learning if you don’t try to push her too far.

 

Fine Motor

 

She is the most compassionate little thing.  She really is.  She asks to pray for the person she knows is sick.  She stops to comfort the child who was just injured.  She feels genuine sadness for those who are struggling with something.

She’s not self-centered.  She asks about stuff.

Just recently after I went out on a date with her daddy, she looked at me the following morning and said,

“How was your date, Mommy?  Did you have fun?  Did you get married and kiss a lot?”

She’s always affectionate.  She tells me she missed me and is quick to give a big hug.

She’s empathetic and pauses to understand why I’m upset about something.

She offers heartfelt apologies when she perceives that she’s offended someone.

Hiking

She’s competitive.

She wants to do everything anyone else can do.

She can grow frustrated and explain that, “Lefty doesn’t work so well.”

In the next breath she’s clarifying Lefty’s gender, “You know Lefty’s a girl, right?”

Oh how she makes us laugh.  She is such a happy girl.  So quick to smile and giggle.

 

Happy Girl

 

She adores music and sings along to the soundtracks of ‘Frozen’, ‘Tangled’, and ‘Little Mermaid’ in the most precious fashion.

We are always surprised when we hear that little voice belting out the lyrics from the rear of the van.

 

And she has most recently developed quite the sense of humor.

“Goodnight Princess,” I whisper.

“Goodnight Queen,” she retorts with a knowing smile.

 

How do I know there is ‘Hope In One Hemisphere’?

Because we have lived it.

Gabby’s abilities far outshine her disabilities,

and our little girl’s personality shimmers like a star.

2014-DOW-5-2

Around the time that Gabby was undergoing her hemispherectomy surgery at NYU another family was living out the same nightmare with their daughter down in Maryland at Johns Hopkins.

They didn’t just survive the nightmare though, instead they established a foundation to raise awareness and support for other families impacted by this radical surgery.

The Hemispherectomy Foundation is currently having their number one fundraising event of the year- The Dreams on Wings 5K.

I have created a virtual running team named ‘Team Gabby Faith’ for anyone interested in supporting this organization.  

So basically you can sleep in, never take a single stride, and still get a Hemi 5K Dreams on Wings T-Shirt!  You can also commit to running your own 3.1 miles if your conscience is getting the better of you.  That’s what my son Gavin and myself are planning to do!

Click on the link above to register as a virtual runner for ‘Team Gabby Faith’.  The cost is $30.00. 

 

Comments

  1. I loved reading about her I hope you continue to right on your blog. She is very beautiful and intelligent and her smile is amazing. I was watching videos of seizers and that is were Gaby came in to view thank you for sharing I am in the medical field and learning new things is always fun for me.

  2. Thank-you for sharing your journey, there really is not a lot of information out there on this condition, and I have done some serious internet trawling! Our little boy was diagnosed with cortical dysplasia in September, shortly before his second birthday. We still don’t have any idea what this means for his future. He was developing brilliantly, walking at 10 months, jumping soon after and a great vocabulary so we had absolutely no warning signs of what was going on in his little head, until in August he started to have seizures. They started at just one a day but within 6 weeks he was having around 5/day on average, we live in the UK and unfortunately getting treatment has required much waiting due to the healthcare service here being incredibly stretched. We initially went private but we’re strongly advised the condition is too complex to maintain private care so had to wait to see the next neurologist. We are there now though and feel in safe hands after a very difficult 3 months. We do not have full confirmation as yet that surgery is possible but we are working up to it and so far everything seems to indicate so. It has been so helpful to read your story and see how well Gabby is doing. Thank-you! Xx

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