The End or The Beginning

I was racking my brain last night for the words to describe Elisabeth and our whole family right now.  It's hard because there are no words.

When I look back at the last 22 months of our lives, I see so many changes.  So much growth.

I saw my precious, sweet, little girl disappear in front of my eyes.  My mama's heart knew something was very, very wrong with her little brain.   I watched her lose her strength, her appetite, her vitality.   I watched her life being taken from her in tiny, little bits.

But, I also watched her never lose her spirit.  Her joy.  Her zest for life.  She never gave up.  Never said "That's enough!!"  Never stopped hoping.

I saw her grow into a beautiful young lady.  Inside and out.

I learned about the Bluebird Clinic for Epilepsy.   I had the privilege of knowing amazingly brilliant, gifted physicians, who give years of their lives sorting through mountains of data.  Researching. Operating in delicate areas with precision and kindness for endless hours.  All to help children, like Elisabeth.  Children that medicine doesn't help.  Children who wouldn't have made it, years ago.

I can't thank those Doctors enough.  They sorted through Elisabeth's information, and knew what to do.  They were able to help her, when others could not.   Our family is so grateful to them.   And  to their families, who have to share them with children who need their help.  We will never forget them.

I also think of family and friends and even friends of friends, who took time out of their busy lives to send cards and well wishes to a little girl they didn't even know.  These special people bombarded the gates of heaven with prayers for my precious one, and it gave us a peace that I can't explain any other way.  Thank you.

I think of my husband.  Who drove to work every day.  Facing that long commute, my tears, Elisabeth's weakness, and hours of hospital visits with strength and love.  He's our rock, he's provided absolutely everything we needed for her care, and for all our children's care.  We couldn't have done this without him.

But, most of all, I think of my precious  Elisabeth Grace.  How she's now growing and blossoming into the beautiful girl that I always saw.

The Dr's have warned us that she's not officially seizure free for a year.   That the seizures could come back.  That there are no guarantees.

But, really,do any of us have a guarantee of tomorrow?

My mother's heart tells me she is well.  I've seen no seizures.  No sickness.  She is alert, growing, happy, full of energy and a zest for life that you only see in healthy youth.   She has her life back.

She has taught me to hold my loved ones close, and seize every day with joy and thankfulness.  Because every day is a gift.

She is my hero.

The Scare

Elisabeth was feeling so well, that we decided to start a project.  We were stuck at home for eight weeks, and she wanted to do something.  So, we moved her into a more grown-up bedroom, and let her re-decorate.   She  was so excited!

We were about knee deep in books when she said, "um, remember that feeling when I have seizures??"

Everything stopped.  I forgot about the project. "Are you feeling funny right now?"

"Yes."

I stopped working and watched her.  Talked to her.  Calmed her.  She didn't blank out.   But, it took a long time for her to feel normal again.

It happened again, an hour later.  And again.   And again.   She got  the funny feeling about eight times over a 24 hour period.   A couple of times, she'd hide under the bed.  It took me an hour to get her out.   I had to watch  her.  I  had to know if any of these were seizures.   Or just auras.  

Not a single one blanked her out.   She was always there.  But, the panic returned.  The watchfulness. The fear.   That knot in my stomach that wouldn't go away.

Of course, it was the weekend.  Her Dr. wouldn't be there.   So, I did what I always did.  I texted our wonderful Dr. Anne.    "She keeps having auras. Some are 45 minutes long.  Is that normal for two weeks after surgery?"

Of course it wasn't.    Dr. Anne told Dr. Quach.   And, amazing Dr. Quach called us on Sunday morning.

I described the behavior to him.  "hmmm.  that doesn't make  sense.  After surgery,  a seizure shouldn't present that way."

"I know, but she's having the feelings."

Then, it hit me.  Not a single one was a seizure.  Pre-surgery,  6 of them would have been.  Maybe they were a medication reaction.

"We can't know what it is just yet.  It could be part of the healing process.  It could be auras.  Or, it could  be anxiety caused by Kepra."

We made some tweaks to her trileptal dosage, and watched her.   Not a one of them caused a full seizure.  They were just feelings.  Nothing more.  She was okay.  

Deep breath.  Calm down.  Even if they never stop, she won't fall down the stairs, drown  in the bathtub, crash a car, or drop a newborn.  We can live with these, if we have to.

But, as abruptly as they started, they stopped.   They haven't come back.  Not a single one. The sun came back out.  The birds started singing, and we saw the rainbows.  Life was good again.

"Weeping may endure for a night, but joy cometh in the morning."  Psalm 30:5

Recovery at Home

I have a MUCH greater respect for nurses.  It's hard to keep track of 10 different medications, given at different times.  And, if I got it wrong, she could have serious consequences.  Aaaak!

Elisabeth went home three days after surgery.  She had a lot of medications. I made a chart.  Set timers.  Set the alarm clock.  Woke up in the middle of the night.  Took care of her.

She took every med like a champ.

She loved being home again.  Within an hour of driving up in the car, she needed her hair fixed.  Southern girl for sure.

She let me detangle all of it.  She felt so very much better.  After an afternoon nap, she wanted to go outside!!

That's the picture at the top.  Elisabeth Grace.  Three days post-surgery.  Her head was a little swollen over her ear.  She had a mark on her forehead from the clamp that kept her little head still for all those hours.  But, otherwise, the same as ever.  Smiling on the front driveway.  Soaking up the sunshine.  And healing.

One week after surgery, her friend came to visit.  Elisabeth was very unhappy that she couldn't run around in the sprinkler with her.  She couldn't understand the need to be still.  I was thrilled that keeping her still was the problem.  What a wonderful problem to have!

She took prescription pain meds for about 10 days.

She took Advil for another 2 weeks.

Every day she got a little bit better. The paleness left her skin.  The energy came flooding back.  Her concentration tripled.  She wanted to read, do art projects, play with her siblings, go to museums, ride her bike, and do everything a 10 year old girl should be doing.

She needed rest.  We knew she needed it when she'd say "Shhh!  My head stings!!"  Time for the pain med, and a break.  But, I was amazed at how quickly her energy returned.  How much she was smiling.  How clearly she was thinking.  How strong she had become.

And no seizures.  Not even one.

I didn't realize how much of a cloud seemed to be hanging over our house before the surgery.  I thought we were hiding the stress well, and the kids didn't know.

Well, about 2 weeks post surgery, we realized.  We were laughing and joking and running around, almost giddy.  That high you get when you stay up past midnight, and everything's funny.  We realized our lives weren't as stressed anymore.

That we weren't constantly watching our child for danger and falls and blackouts.  That we were acting like a normal family.   It almost seemed to good to be true!

That's when we had the scare.

Recovery--the first three days

My thoughts in the recovery room went something like this, "She looks OK!!!!  But, she's still sleeping.  Can she talk?  They said it would be gibberish tomorrow.  Can she see?  Will she recognize us?  Will she REALLY be okay?"

The Dr.'s and nurses stopped by regularly.  "Elisabeth, can you hear me? Your mom and dad are here!"

She opened her eyes and smiled at me.  "What??  I'm done??"  Close eyes.

"Honey, you're done.  How are you feeling?"  She opened her eyes again.  "Um, my brain feels like it's working better."

Could she know that already??  Is that the meds talking??  How amazing that she said that so soon!!

The neurologist came in.  She was still mostly sleeping.  "Elisabeth.  Can you wiggle your toes?"  Wiggle.  "Elisabeth, can you hold up your hands?"  The hands went up.  "Hold them like this, like you're holding a pizza."  She did.  "What's your favorite kind of pizza?"  "ummmm."  "Cheese? Supreme? Pepperoni?"

"It would probably be the pepperoni."  Close eyes.

Scott and I looked at each other.  Did she just say that?  Her verbal was fine!!!!!

She spent the first night in the PICU.  Not a place for the faint of heart.  It was loud.  And busy.  And she hurt. Her blood pressure spiked.  I was trying to find her help that just didn't exist.  She was crying and I was crying.

 Her anesthesiologist happened to come in right then.  He saw what was happening and called Dr. Curry.  Dr. Curry came in like a knight in shining armor, and gave her more pain meds.  Her blood pressure instantly dropped to normal, and she calmed down.   I wish we could forget that night, but it happened.  She doesn't remember it very much.  And, she was rescued.  Enough said.

The afternoon following surgery, she got a good MRI report, and was able to move upstairs.  Her own room at last!!!

The gibberish should start soon.  I was dreading that part.  She kept resting and talking. "Do you remember that picture of the happy girl eating the happy popsicle??  Well, they lied.  It's not like that AT ALL!!"

Perfect memory.  Perfect verbal.  No gibberish.  Hurray!!!!!

 I started wondering about what was under the cap bandage.  Would she have a big bald spot,  with deep red cuts running through it?

Scott spent the nights there, and I cuddled my other sweethearts.  When I came in on Saturday morning, she was sitting up in bed and smiling.  "Can we snuggle?" she asked.

Oh, the bliss.  I climbed up onto her hospital bed with her frail little self, and just reveled in her life, her energy, her strength.  After about five minutes, she was ready for a rest.  But, I was on cloud nine the rest of the day.  My baby was all right.  She was going to be all right.

The Dr. came in and removed the bandage with the little cap.  Huge bunches of matted, caramel colored hair tumbled down.  "Where was the incision again?"  asked the Dr.  "Over her left ear."  He had to look for it.  "It's looking great!  I could hardly find it."

Her hair was all there.  I don't think she was missing a single one.  Bless Dr. Curry.  He's an angel in disguise.

She was supposed to be in the hospital for five days.  On her second night, Saturday, she decided she wanted to get out of her room.  She walked the hall.  Saw her nurses from EEG week.  Laughed and smiled and chatted with them.  Sat on a rocking chair, and met her siblings in the hallway. She was so proud of herself.

"Can I go home?  I just want to go home."

Dr. Curry said, they always convalesce better at home.  Since there was no real reason to keep her there, she could go in the morning!!!!

So, after an all-day surgery on Thursday, she was out of PICU on Friday, walking the halls on Saturday, and home on Sunday.  Her brain was working, her body was working, she was perfect. The worst was behind us.   All she had to do was rest and heal.

"He giveth power to the faint; and to them that have no might, He increaseth strength." Isaiah 40:29

Ten long hours

My baby was now in another room.  Full of medical staff.  She had an anesthesiologist, a team of neurosurgeons, an epileptologist, and at least two nurses with her.  The anesthesiologist told her that she would smell bubble gum, and then go to sleep. She wouldn't have to feel the IV needles pricking her.  She was thrilled about that.

The nurses told me that it took two hours to prep her for surgery.  She had many monitors on her, and had to have something holding her head perfectly still.  They even prepared her young skin to not be irritated by lying in one place for so long.  She slept through all of that.

It would take at least an hour to remove part of her skull.  They would take an echo of her electrical activity.  They would then go to the area that needed removing.

The surgeon would remove, then test again.  When the sounds were right, they could close her back up, and work towards recovery.

All of this would take all day.

The Dr.'s warned me that when she got to recovery, she would be swollen and bruised.  She would probably speak gibberish for a few days, while the brain swelling went down.  I was not to be alarmed, that would be temporary.

All we could do was wait.  And wonder.  And wait.

But, an hour and a half in, something wonderful happened.  "Would the family of Elisabeth Elliott please come to the desk?  We have an update for you."

An update??!! Really!!!!  The sweet nurse was on the phone, using her happy, upbeat voice.  "The prep is finished.  She's stable. We are now beginning surgery."

Oh, what a happy gift!!  They tell parents what is happening.  We didn't have to wait 10 hours to hear anything.  We knew she was stable!!  It was like we saw a faint, little light in the distance, at the end of a tunnel.  She was stable.

We found a beautiful waiting area in a different place.  We had easy chairs that we turned around to face the windows.  There was classical music playing.  I updated my mother, Aunt Granny, and my friends on facebook, then just looked at the beautiful sky and prayed.

The updates kept coming.  The epileptologist came to find us.  No seizures during surgery.  She was stable.  They were finding what they needed to find and removing what they needed to remove.

Our kind pastor and his wife showed up after lunch.  We sat together, talked, and kept ourselves reasonably distracted.  More updates.  More letting everyone know.  Dr. after Dr. came into the waiting room to see other families.  Many families called to recovery.

A research lady came to see us.  Can the hospital keep the part of Elisabeth's brain tissue that we didn't need for testing?  Dr. Anderson is doing a research study into the causes and identification of epilepsy.  This could help future children with epilepsy to have a better diagnosis.  Of course, anything we can do to help is fine.  Sign.

The best news so far happened about 3:30.  Elisabeth's  Dr. Anne came to see me.  She had been in the surgery for a while, and saw the last echo.  The sounds were normal.  They had removed all they needed to remove.  Dr. Curry would see us soon!

Then, there he was.  Around 5:00, Dr. Curry himself came to see us.  All business.  She did well.  Sounds were bad this morning.  Perfect this afternoon.  Her left temporal lobe had a big area that was malformed.  He didn't think it was cancer.  But, he didn't think it had ever worked.  That part of her brain was disrupting the rest of her brain, and caused the problem.  But, now, it's gone.   She's totally stable.  They're closing her up.  We will be called to recovery in about 2 hours.

I was still in a little bit of shock.  It took awhile to sink in.  But, it finally hit me.  She made it.  She was OK.  It seemed like the surgery worked.  Soon, we would see her.

About 6:30, the call came over the loudspeaker "Family of Elisabeth Elliott, come to recovery."

And there she was.  Lying on her bed.  With her perfect, pale, porcelain, baby doll face.  No bruising that I could see.  No swelling that I could see.  Perfect.  Her little eyelids were shining with the ointment the nurses had put on her eyes.  She had a little white cap covering the bandage on her head.  On the cap was a little pink heart.

"OH!  She's Beautiful!!!"

My little sleeping beauty was done.  She was alive.  She was breathing.  Her heartbeat was even on the monitor.  And she was beautiful.

"Yeah, though I walk through the valley of the shadow of death, I will fear no evil.  For thou art with me."  Psalm 23:4

The Big Day

Aunt Granny is a dear family friend.  She met my mother when they were expecting Nancy Elisabeth and me.  Nancy was born 2 months before me, and we were like sisters.

We tragically lost our dear Nancy Elisabeth to a car accident when she was 18 years old.  On that horrible day, my mother and Aunt Granny were walking in front of me.  Aunt Granny suddenly stiffened up and she said, "I'm not going to have any grandchildren."

Without even a thought in my traumatized, young brain, I blurted out, "Yes you will, because my children will be your grandchildren, and I will name my first daughter after Nancy Elisabeth."

That turned out to be one of the huge blessings of our lives.  Because my children have not two grandmothers, but three.  Each of them loving and caring for my children in different ways.  But, Elisabeth and Aunt Granny have a special bond.

Aunt Granny was there the day Elisabeth was born.  She watched Elisabeth's first breath.  She watched her turn pink.  She took Elisabeth into her arms, and has never let go.

So, it was a great comfort to me when Aunt Granny said she was praying.  All day.  She said she would pray for every cell.  That the surgeon would remove every cell that needed to go.  And not a single cell more.

I remembered that as I signed Elisabeth's life away.  The papers stated in legalese that the Dr's are only contractors.  That there's no guarantee of results.  That she could die on the operating table.  That she could get infected, have brain damage, lose vision, lose memory, swell, bruise, and none of this would be the hospital's or Dr.'s fault.  All while the kind, sympathetic Dr's explained that they think this surgery is best for her, and the risks are very minute.

"Aunt Granny is praying.  Friends are praying.  It has to be done."  This was in my mind.  Sign.

The child life worker kept her word, and found Elisabeth.  She perkily showed Elisabeth pictures on the hospital ipad.  Pictures of a smiling child picking a happy smell from her bed on wheels.  Of the smiling child waking up in the happy recovery room, and joyfully chowing down on a popsicle."

Elisabeth giggled.  "Oh yes, I would love a grape popsicle."

She smiled at the anesthesiologist and the neurologist and the nurses.  She picked bubble gum flavor for her silly smell.  She smiled and waved as they wheeled her away, still holding on to her stuffed panda pillow.

I think the hardest thing I've ever done in my life was smile and wave back at her.  The tears were choking up my throat.  Everything in me wanted to run and grab her and carry her out.  Away from danger.  Away from the pain that was coming.  Scott realized it, and put his hand on my shoulder.  The anesthesiologist mouthed at me "We'll take good care of her."

I took a deep breath, and kept smiling and waving until she wheeled around the corner.  Then took a pack of tissues into the bathroom and cried my heart out.  Deep breath.  New makeup.  Back out into the waiting room, where my husband and daddy were waiting.  Full of strength and support and love.

"Aunt Granny is praying.  My church is praying.  My friends are praying."  She had to be OK.  She had to.

"The effectual fervent prayer of a righteous man availeth much."  James 5:16

Preparing for surgery

"ANOTHER ONE????"

"I'm sorry, sweetie, this one popped out."

TX children's is a teaching hospital.  Sigh.

The new nurse tried again.  Thank goodness we used the numbing cream.  The stick worked that time.  The last vial of blood was collected.  Elisabeth was done with the needles before surgery.

We went back to the waiting room.  She had to meet with four different groups pre-surgery.  They checked bloodwork and vitals, discussed anesthesia options, and got her case history.  Over and over.

"hey!!  There's my friend!!!!"  She scooted over to the child-life worker.  The worker smiled at her, remembered her as the pretty little ballerina from the EEG unit.  She checked her schedule, and said she'd be the helper on the morning of Elisabeth's surgery.  Elisabeth was thrilled.

"Oh, yay!  There's Dr. Curry!!!"  Elisabeth waved and smiled her biggest smile.  He took the time to stop by, and tell her hello.  We reminded him that Elisabeth was next Thursday.  He said he's see her then.  She grinned.

She went on charming every nurse and worker and child in the waiting room, until we were finished.

She was actually looking forward to coming back.  That hospital is very good with children.

The nurse told me I could give blood for Elisabeth.  "We might not need it, but if we do, she would have yours."

It felt so good to actually do something for her.  Besides driving.  And hugging.  The girls loved it that Mommy got the needle that time.  They watched the blood bag in horrified fascination.  Elisabeth wasn't thrilled that she could need so much blood.  But, accepted it, because it was mommy's.

My parents flew in two nights before.  They were a wonderful distraction.  I didn't notice my hands shaking as much.  The kids didn't talk about surgery as much.  Parents make everything feel better.

Papa told me that he had mentioned Elisabeth on an email to many, many pastors.  That they all had their churches praying for her.  That was comforting.

Our own pastor sent out an email.  The church family signed up for prayer times.  Someone was praying for her every minute starting at 6:00 a.m. surgery morning.  My eyes couldn't stay dry.  Neither could Elisabeth's.

She got cards from people we didn't even know.  Pictures from children.  Notes from adults.  All full of kindness, love, and hope.  Elisabeth cried every time she got one.  "Oh, Mommy, they are so nice!"

The night before her surgery, we played in the sunshine, watched them all together, took pictures, and just soaked in the beauty and joy of living.

When Elisabeth went to bed that night, she told me she was a little scared.  "What if something happens to me?"

"Honey, people are praying for you all over the world.  Even in China.  I don't think anything is going to happen to you, except healing.  But, if it did, do you know what would happen then?"

"I'd be in heaven with Jesus."

"Yes, Jesus said 'I am the way, the truth, and the life.  No man cometh to the Father, but by me.'  Papa used to say when he was preaching, that no one ever goes to hell, clinging to the feet of Jesus."

She smiled.  "I believe, mommy."  She settled into her soft pillow, and smiled off to sleep.

"He shall gather the lambs with His arms, and carry them in his bosom."  Isaiah 40:11

The risks and pretending they weren't there

Like I said before, I'm a numbers person.  The numbers for epilepsy are not good.

But, the numbers for a left temporal lobectomy are very good.  A serious problem during surgery is extremely rare.  Only one child in a thousand will die during surgery.  The other 999 will survive.  Which is much better than their odds, if facing a lifetime of blackouts.

That's why we were so very thrilled, when we realized she would be able to have the surgery.

But, then, reality set in.  My daughter was going to have brain surgery.  In a month.

My precious, wanted, loved, sweet little girl.  The brave little girl, who faced needle after needle this year, even though pain terrified her.  The one who lay still in cave after cave, while machines whirred around her head.

The surgery meant that a portion of her skull, above her left ear, about the size of twinkie, would be lifted off of her brain.  Her brain would then be lifted, and the surgeon would remove about a third of her temporal lobe.  This was the part that was non-functioning.  The part that disrupted the electrical circuits in her brain.

The part that was sucking her life away.

Her surgeon, Dr. Curry, is wonderful.  One of the best in the world.  Maybe THE best.  The surgeons have computers and tools to help them be very specific.  They are able to sew everything back.  And, surgery had an excellent chance of working.  About 75-80 percent of epileptics with this type, are either completely cured or controlled.  It would probably give her life back.

So, why was I waking up in the middle of the night, over and over, with a headache?  Why was I shaking all day?  Why was I taking Aleve and caffeine all day long to feel normal?  Why was my forehead constantly lined between my eyes?

Because I knew the risks.  She had a good chance of losing a small part of her vision.  It was the best one to lose, they said.  In the upper right quadrant.  She could still be 20/20.  She could still drive.

She could lose part of her verbal memory.  That part that we all have trouble with.  Where a word is on the tip of her tongue, but she can't remember it.

Then, there were the surgical risks.  Stroke, infection (meningitis), etc.

"STROKE??!!!"  She was sitting in the surgeon's office when we heard that one.  "Very rare," he said.

In the car, I told her "Life IS risk, honey.  Every day, something could happen.  We don't make our decisions out of fear, or worry.  God will take care of you.  And, if the surgery works, you'll be seizure free."

She smiled.  "Oh mommy, it WILL work."

Oh, the beautiful faith of children.

So, I spent the next month teaching them, reading to them, driving them, snuggling them, smelling them, smiling at them, and soaking up their sweetness.  Pretending everything was fine.  While waking up with nightmares.

But, I learned something, in those dark, sleepless hours.  I learned to really pray.  I prayed for her to keep that precious faith. To be completely healed from her condition.  And for me to have the strength to face the next day with a smile.  With love.  To teach my children that true strength lies in facing our troubles,  climbing our mountains with courage and trust, and leaving the rest to God.

"For God hath not given us the spirit of fear, but of power, and of love, and of a sound mind." II Timothy 1:7