2 Years, an Anniversary of Sorts...

Two years ago on July 3, 2014 we carried Luisa 20 months young into a building that seemingly held the yes and no of our future.  The test results we would receive that day were as immovable and solid as the brick and mortar building we now found ourselves entering.  This day would end our search for answers.  This day we would place our little Luisa on an examination table where her feet would be measured, her height and weight graphed, and her head measured for clues.  We would answer exhaustive questions.  I knew the answer to almost every one.  Two years ago today I entered the tiny exam room convinced for the first time in 6 months that despite the genetic results my blue eyed baby girl would not have Rett Syndrome.  She would be an anomaly.  She would have the genetic markers and miraculously not actually have the disease.  She would not lose the words she was currently saying.  "Bubba, duck, baby,"  She would not lose the new words she was learning every week.  They would not disappear.  She would not lose hand function.  She would not start wringing or putting her hands in her mouth, or clasp them over and over again in an nonsensical pattern.  No she would not.

  

I dressed her in a new outfit, blue stars on a white bubble.  Tomorrow would be the 4th of July.  I wanted her to look festive as if diagnoses and diseases did not exist, just fireworks and hot dogs.  Celebrations and a mother who didn't always look so worried.  Luisa sat blue eyed and chunky cheeked on an examining table, oblivious to the gravity of the words, "Rett Syndrome."  Two years ago she smiled and touched the famous Dr. Percy's face while he squeezed her feet and spoke so sweet, so kind to her.  Luisa touched his face and she did so without hitting him.  She could feel his whiskers, her very favorite thing, and she could do it with control.  She would smile at him and the examination would mean very little to her.  For two pale-faced parents, for Tony and Sarah, it would mean a line in the sand.  A before and an after.  

We answered questions and the professionals so kind charted and graphed.  They rated and circled on their tablets.  Then at the end Dr. Percy cleared his throat and began to go through the rating scale, where she fell on this or that criteria.  He finished reviewing his notes and before another breath could be taken I asked, "Does she have Rett Syndrome?"  And the answer was, "She meets all criteria for classic Rett Syndrome."  For the first time since we entered the room there was silence.  Holding my Luisa I said through tears, "Well I thought so but I hoped maybe not."  I had argued with every doctor for the last 6 months trying to convince them she needed to be tested for Rett Syndrome.  This was the one time I did not want to argue.  My back longed for a reassuring pat, a "No, no.  Despite her blood results and your exhaustive observations confirming this diagnosis she does not actually have Rett Syndrome."  But no. No.  This heart-breaking diagnosis was filtered through God's hands in my womb and on July 3, 2014 it landed heavy in our laps,  It would be a full year before I would feel somewhat normal again.  As a mother, as a person I would never be the same.

Two years later Luisa has no words.  The last to disappear was "momma."  She said it on Mother's Day 2015 and then it misted away.  I'm not sure the exact day when she went silent but now only screams remain.  Two years later when she touches others it is rarely gentle. Often she slaps or hits.  Her brain, now full of bad proteins, causes her to have dyspraxia.  She knocks everything off the table, she slaps when she wants to touch, she throws her arms in the air when she wants to wrap them around our necks.  On the few occasions Luisa is able to touch her baby sister, she manages to touch her gently.  It is with the greatest concentration that she performs this simple task of touch, this basic human interaction.  Her ability to  pat, to touch, to lift her arms for a hug, they are rare and someday may disappear all together.  Two years after Luisa's diagnosis I can bluntly and honestly say she is not the same.  Rett Syndrome is cruel.  I will not lie about it or gloss over it to make others more comfortable with suffering.  But I also will not lie and say God has turned His face.  I will not say He does not care.  I will not say this of my God.  I will not say that when the answer is "no," He is somehow not the same as when the answer is "yes."  That He was more loving when He handed me beautiful, healthy, thriving babies who talked and laughed and played than when He sovereignly entrusted me with Luisa, a daughter fully dependent.  He was loving then and He is loving now and He will be loving forever.  Because God is LOVE.  And God is PROVIDER.  And God is GOOD.  This is the greater truth.  Greater than lost skills and stolen words and hands so dysfunctional.  He is greater than a momma's heart broken, a marriage tested, a world that suddenly seemed so very weary.  He is greater and this is truth.

Today, two years after Luisa's diagnosis we attended the birthday party of a blond haired, blue eyed boy four months older than Luisa.  He is four and he holds up 4 fingers to let you know.  He uses sentences to talk but is shy about talking with lots of people around.  He likes dinosaur robots and Paw Patrol.  He is the son of one of my dearest friends.  The friend who went with me to Luisa's first neurology appointment.  The one who sat with me for half a day when I received the genetic results by phone before Tony could scrub out of surgery and rush home to his family.  This sweet 4 year old boy attended Luisa's 2nd birthday, four months after her diagnosis.  Luisa's birthday party smack dab in the middle of her regression.  He attended and my heart could barely stand the sight of what would never be.  It physically pained me.  I cried that day.  I cried most days that year.


How poignant two years after Luisa's diagnosis to attend this sweet boy's birthday celebration and feel nothing but joy for him and his family.  To look over at Luisa and feel pleasure not pain at who she is.  She is my Luisa and I have grown to see her through a different lens.   A lens not darkened by visions of what could have been.  A lens clear and proud of who she is today.  Proud of her squint eyed smiles and the love she so readily gives those in a room.  I inwardly laugh when she charges up to an adult, disturbing them from their mindless iPhone scrolling, demanding they acknowledge her presence, look her in the face, smile back at her.  I enjoy watching others interact with Luisa, how her beautiful brokenness exposes the human heart.  Two years later I attend this birthday party.  I laugh.  I think the birthday boy is the cutest ever.  I do not feel bitterness and I KNOW this is God's grace.

Two years later I move from singing desperately "Strength for today," into confident "Bright hope for tomorrow.  Blessings all mine.  WITH 10,000 BESIDE."  I can sing this even though tomorrow may bring scoliosis or seizures.  Surgeries or wheelchairs.

Yes today, July 3, 2016 Tony and I pause to remember but we also kneel in thanks.  Thanks that we serve a God who provides new mornings and second chances.  A God with power to transform hearts and heal wounds.  A God of purpose and peace.  At the end of this day, two years later, I confidently say Rett Syndrome is not the yes and no of our future.  God is my yes and my no and I leave it all in His hands.  He is good.  He is faithful.  He is sure.

Mean

It is 4:30 a.m. and Luisa wakes with screaming.  I roll over, check my phone clock and sigh.  These night / early morning wakings are infrequent enough to cause us to grow comfortable with 8 hours of sleep but often enough that I rise resigned.  As I stumble across the hall to her room I wonder if she will be easily calmed this morning.  Or will she get worked up, difficult to soothe, screaming, head thrown back as if in a night terror?

As I enter the room Sophia mumbles from her bed next to the crib, "Momma!  Why is she CRYING!?!?"  Hand over her ears, hair covering her face, voice groggy but urgent.  She is warm under her covers pulled up to her chin, eyes only half open.  Her question is one of pleading.  So I tiptoe to her bed first, allowing Lu to continue in her screams a moment longer.  I whisper in Sophia's ear, "Go to momma and daddy's bed," as I kiss her cheek.

Sophia stumbles out of bed, out of the room, and into our toasty bed across the hall.  I pick Lu up who has grown stiff with screaming.  Head back.  Shrillish.  I cover us both with her purple blanket, force her head down on my chest and begin to sing.  She does not soothe easily and bucs against my hand forcing her head down.  Then she begins to bang her head against my chest, throwing her head back then slamming it on my breastbone.   I am tired but on autopilot.  I run through my mental checklist:  When was her last BM - could she be constipated again?  Did she get her reflux medicine yesterday?  She has on her thermal onesie so she couldn't be cold.  How much did she eat for dinner?  Could she be hungry or thirsty?  Based on the intensity of her wails and the throwing of her head, I know this will be one of those times she does not settle until I place her back in her crib with her bunny.  This breaks a momma's heart when your touch only makes your baby more agitated.  When you can't seem to figure it out.  So after offering water and trying to soothe a little longer I place her back in her crib.  And between the screams I tell her I love her and "here's your bunny," and "go night-night."  I tiptoe out of the room and Luisa goes silent before I get back to my bed, slide under the covers, to nuzzle my nose in Sophia's neck.  Whatever woke Luisa in terror or pain has ceased.  Yet I wonder if she is wide-eyed in her bed?  I fight the temptation to go back in, knowing it will only make her get worked up again.

Tony is up and getting ready for the day and I calculate about an hour more of sleep/resting before I too will need to rise for the day.  Luisa will most likely fall back asleep or stay content in her crib for at least another hour.  Her crib and her bunny are her "reset" place, the place where she can decompress, be away from environments and people that are overstimulating. 

I encircle my arm under Sophia's as I entwine my hand with hers.  She snuggles closer to me and we lay there awhile.  Then she whispers in the quite warmth, "Momma, why does Luisa cry?"  "Is she hurting?"  "Do you think she is thirsty?"  

"I don't know if she's hurting Sophia.  I don't think she's thirsty.  I offered her a drink," I answer quietly, proud that my eldest has thought so specifically about Luisa's needs but saddened by my lack of knowledge or answers.

"Then why does she scream?" Sophia asks, her voice somewhat desperate.

"Well love, I think it's the Rett Syndrome.  Maybe her tummy hurts because of the Rett Syndrome. Maybe she is afraid.  Girls with Rett Syndrome have anxiety.  Do you know what anxiety is?"

Thoughtful pause then, "Yes.  It is when you are scared."

"Yes.  Sometimes I think Luisa is afraid.  You can see it in her eyes.  She looks afraid.  And you know what?   You get afraid too don't you Sophia?"

"Yes."

"But when you are afraid your brain lets you calm yourself down with your thoughts.  Or you calm down because Daddy and I hug you and sing to you.  And your brain lets you calm down.  With Luisa because of Rett Syndrome, her brain doesn't allow her to calm down.  So instead of being soothed by Mommy and Daddy she gets more worked up because her brain is anxious and doesn't know how to rest."

We lay silent for a bit and I grow drowsy with her soft, brown hair against my cheek.  

Then the warm quiet is broken with her gentle voice.

"Momma sometimes her brain is just mean."

I hug her closer and say "Yes.  Yes you are right.  Sometimes Luisa's brain is just mean to her."  

We lay there quietly and I let her words sink in.  There really is no better description.  Sometimes a brain inflicted with Rett Syndrome is mean to the little girl within whom it dwells.  I want to sneak back in the room and whisper to Luisa, "I'm sorry your brain is being mean to you."  I'm sorry your brain won't allow you to calm down, that it lets you spiral out of control.  That it sends you in confused wanderings through the house.  That it keeps you from understanding how to play.   That it seems cloudy at times.  It is mean to you but yet, Luisa you are so patient.  You work so hard to come out from under it.  

I see it in your therapies.  How your brain wants you to stay fixated on your duck or on your wanderings and you fight.  You fight to engage.  To turn the page to that book.  To choose that picture card.  To turn that knob on the pop up toy.

Sometimes our little girl fights her way through a brain that fights against her and our true "Luisa" comes out.   In the midst of  your aimless wandering you hear your big brother crying as he gets antibiotic drops in his eyes to treat a bout of pink eye.  You look up from the rubber duck you are holding and biting and you walk straight to your brother laying across my lap and you plant a kiss on his shoulder.  Tenderness, empathy, deliberate action.  This is my sweet girl.  I smile, squeel, and say, "Vincent your sissy loves you!  She is sad you are hurting!"  He jumps up from across my lap and goes over to her and says, "Thank you sissy.  Bubba's ok."  

There's this part of your brain, Luisa that is untouched, unimpaired.  And this is the part of your brain that loves people.  That seeks approval.  That pats the baby.  That kisses your hurting brother.  That gets her feelings hurt.  That laughs at your sister and brother.  That reaches up and touches your daddy's face when he is talking to you so sweetly.  That looks so lovingly at your mother.  That squeels and shrieks with delight when you arrive at The Bell Center after two week off.  That will sometimes say "Hi" as you smile at a stranger.

Little Luisa, somehow these moments when your brain is at rest, allowing you to be you, these moments are more precious than a million ordinary moments.  These smiles and kisses and pats on our face precious like emeralds and rubies.  Their beauty outshining all the moments when your brain is being so mean to you.  

You have four people (well, many many many more than four) who love you dearly, Luisa.  Four people who delight when you push your way through Rett Syndrome's cloud.  Four people who shout and whoop with joy when you kiss us as if we have discovered a diamond mine.   

Brains that are broken, bodies that are crippled, hands that are declining in function.  The words of an older, wiser mother of a daughter with special needs come back to me now, "There are broken bodies but there are no broken souls."

And so, Luisa Ray your brain may be mean to you sometimes but your soul?  Your soul is as beautiful and pure as the Paperwhites now breaking through the cold, hard winter dirt.  Your soul is in tact.  Your soul most capable.  Your soul an image of His.  Your soul.  Not mean.  Not broken.  But whole because He made you with His hands.  He willed you into life.  He loves you.  Hears you. Understands you even when we sometimes do not.  He is at your side.  He is near.

O Lord, you have searched Luisa

and you know Luisa. 

You know when she sits and when she rises;

you perceive her thoughts from afar.

You disern her going out and her lying down;

you are familiar with all Luisa's ways. 

Before a word is on Luisa's tongue

you know it completely, O Lord.

You hem Luisa in - behind and before;

you have laid your hand upon Luisa.

Such knowledge is too wonderful for Luisa,

too lofty for her to attain.

 

Psalm 139:1-6 (with my insertion of "Luisa")

Miracle

Many are praying for a miracle for Luisa.  That she will be able to walk (an answered prayer, A MIRACLE!, since I originally wrote this post back in October), retain some speech, be cured completely - either through scientific breakthrough or a mystery unexplained - a complete healing.  I pray these things as well.  I pray she will still say Mama when she is 5 years old, 10 years old.  I pray she will always be able to grab her bunny lovie to place in her mouth for comfort.  I pray her legs will only grow stronger, more coordinated.  Scripture tells us "you do not have because you do not ask," so on this journey I ask for things big and small.  

Yet as I pray these things, God is already working a great miracle.  And the miracle is here in this picture, in pixels bright on my screen.  

Here is a miracle of the working within, unseen.  The promise to change, to sanctify in every trial those whose hearts are steadfast on Him (Philippians 1:6, Romans 8:28, Romans 5:3-5).  Here in this picture is a mother who has a heart at peace, eyes no longer full of fear.   Joy has crept in and found its way.

 

Back in February as Luisa slipped away from me, I opened my computer and Googled her symptoms. With every click of the mouse, with every video and article about Rett Syndrome appearing on the screen, my breathing grew shallow, my heart heavy.  Fully convinced before any doctor would confirm, I cried for days.  I couldn't stop crying.  Posts on the Internet written in stages of grief and hopelessness left me feeling the same.  There were no answers for months on end, doctors telling me "she's slow getting out of the gate.  She's too pretty to have Rett Syndrome (hasty words that still haunt me)." Yet the worry remained, deeply planted like lead in my heart.  I dressed her up week after week, appointment after appointment, wanting so desperately an answer.  A course.  A plan.   Something wasn't right.  So I watched her every move, recorded her every word in my journal, fearful it would all go away.  Every single day I prayed in my closet for the cup of Rett Syndrome to pass from our family, from Luisa.  

This went on for months, this time characterized by the unknown.  It is not the full truth if I do not share the wonderful care given me by a Christian counselor and psychiatrist during these difficult months.  More Christians should seek out this help but we are afraid to be stigmatized as "not having enough faith."  If you suffer from anxiety and a cloud that will not go away, be brave and turn the handle to that office, knock on the door, weak and broken.  Tenderness is on the other side.  Help and insight and prayer is on the other side.  Don't suffer so in silence, in your anxiety and hurt.  I did this for too long.  But now I have a standing appointment where we discuss Psalm 139, the brokenness of this world, and how God whispers in this very brokenness.  I have a professional to help me heal.  And that is ok.  And that is good.  

After months in this time of the "unknown," I finally surrendered in my prayer.  I added to "may this Rett Syndrome cup pass from Luisa and our family," a...... "but if it doesn't...."  It was a quiet revelation, it might not pass from us.  It was a giving up.  A "I don't think I can, but YOU can."  An emptying of the maggot filled jars of tomorrow's borrowed bread and an accepting of today's manna, like honey to my mouth.  A "YOU can be trusted, come what may."  A heart accepting and resting, long before the diagnosis actually came.  

 

 

The cynic creeps in and says, "This picture?  These eyes of joy?  This authentic smile?  It is denial."  Oh cynic, you are missing the rest of the picture.  Scan to the right and to the left and you will see wheelchairs, and wringing hands.  You will hear parents discussing g-tubes and the re-telling of regression.  This picture, taken at the San Antonio Strollathon for Rett Syndrome research, crops out the reality all around.  But do not think for one moment I am in denial.  I am fully aware, pending a cure, that Tony and I will care for Luisa in the most raw, organic ways for the rest of our lives.  I am fully aware that we are in the regression period for at least another year and a half.  That at any point she may lose the skills she's worked so hard to gain.  And maybe she will not.  "You do not have because you do not ask."  So I will balance my plimsoled feet on the tight rope between acceptance and the request for a miracle.  And wherever we land, He is already there, supplying everything we need.  A wise person (most likely a Bible Study Fellowship teacher) once shared this Biblical truth - That which God has called you to do, He will equip you to do.  So I will smile.  And I will have joy.  And it will ALL be because of Him.  His grace.  His favor.  His goodness.  His gifts.  His provision.  Sadness, yes. Tears, yes.  Fear?  Oddly enough, no.  A miracle.  A miracle for sure.

 

Oh the depths of the riches of the wisdom and knowledge of God!

How unsearchable his judgments, and his paths beyond tracing out!

Who has known the mind of The Lord?

Or who has been his counselor?

Who has ever give to God, that God should repay him?

For from him and through him and to him are all things.

To him be the glory forever!  Amen

Romans 11:33-36

 

Thirsty

Vincent has been in the garage for at least an hour.  Bending over paper, paint and markers in hand at our new garage craft center.  His glasses slide down his nose so he peers over them like an old man, his hair sticking up in the back, paint smeared on his shirt and pants.  I check on him between loads of laundry and unloading of the dishwasher and the refilling of Luisa's straw cup.  Eventually, the back door slams.  He steps in the kitchen, creation in hand.  "Momma for you!"  He peers at me over his glasses with a big, proud smile.

I am struck dumb for a moment then exclaim, "I LOVE IT!" 

I stare at the painting and the lesson hits deep to my heart.  You must grow weary with me, God.  Always having to be so obvious.  Having to send a child to bring home the point You've laid on my heart over the last few months. 

In Vincent's artwork I see streams running down from the cross.  Surely he was not thinking of streams of Living Water as he painted his cross creation?

"Vincent, what is this a picture of?"  

"Momma you know that place we go where we dress up?"

"Church?"

"Yes.  This is church," Vincent declares.

 I see the dome now and yet I ask him about the blue.

"That's where we walk up."  

He sees the blue going up, a sidewalk of sorts and I see the blue flowing down.  I wonder if the brown paint ran out and blue was the next best thing?And I know what God is trying to say.  Living Water.  Living Water.  Living Water.

This reminder now on repeat.   I get it.  I get it.  

If I believe my body is made up of two dimensions - the physical and the spiritual, why do I take care of one so carefully while neglecting the other?  I minimize fried food and I haven't eaten a McDonalds french fry or burger in I can't tell you how long.  I overload on snacks but for the most part, I stick with fresh food and smaller portions.  When I cut my finger preparing dinner, I wash the injury thoroughly.  Apply a bandaid if needed.  I take care to sleep at night.  I am careful to wear a jacket.

But my spiritual?

I've been substituting.  Neglecting to spiritually nourish for whole days of the week, then binging on the weekend hoping it will last.  Oddly, I always find myself hungry again the next day.  

I drink spiritual Soda (the substitute of people, numbing TV, the winding down of that glass of wine) and expect it to satisfy Monday through Friday.  Like lukewarm soda these things taste sweet as they hit the tongue but grow saccharine and empty when swallowed down.  I am weary.  Perhaps I need to exercise.  Perhaps eat better?  Maybe take a nap?  

All the while my other half - my spirit.  My spirit is thirsty, starving really.  

So on Saturday and Sunday I gulp of Water, eat of Bread hoping it will be enough to sustain all week.  But come the end of the day Monday?  It is not enough. 

How often, how frequent does God need to show me the error of my ways?  How explicit is He?  When you leave Egypt, consume the Lamb completely so that you might be nourished on your journey (Exodus 12).  Why do I hesitate to consume my Lamb on my knees EVERYDAY, quietly in my closet so that I might be sustained spiritually for this tough journey?  Eating of the small wafer during the Lord's Supper on Sunday?  Sarah, feast on the Bread of Life, not just on Sunday but each day.  Or else you will grow faint.  Exhausted.  We must eat everyday for our bodies to thrive.  We must drink daily from the cup of His word for our spirits to thrive. 
 

 

Right there in the kitchen, a five year old's art in hand I am reminded of the Living Water offered to a woman at the well.  She was most thirsty.  Substituting and feeding her spirit with the love she could find from other people, men.  And it was nothing more than junk food, a few drops of lukewarm soda.  She was thirsty.  And Jesus wanted more for her.  He saw straight to the soul, the soul with it's ribs sticking out and its dry, cracked lips.  He knew about her substitute love.  He knows about our substitutes of earthly praise and accolades and success and He says, "Everyone who drinks this water will be thirsty again, but whoever drinks the water I give him will never thirst.  Indeed, the water I give him will become in him a spring of water welling up to eternal life."  John 4:13-14.

And in despair I bowed my head

                              “There is no peace on earth,” I said,

“For hate is strong and mocks the song

Of peace on earth, good will to men.”

Then pealed the bells more loud and deep:

“God is not dead, nor doth He sleep;

The wrong shall fail, the right prevail

With peace on earth, good will to men.” (I Heard the Bells on Christmas Day)

Work, work, work all week and refuse to eat the Bread of my soul.  The Bread of Life  "Do not work for food that spoils, but for food that endures to eternal life, which the Son of Man will give you.  On him God the Father has placed his seal of approval."  John 6:27.

Passover Lamb.  Living Water.  Bread of Life.

I hang Vincent's picture in my place of prayer.  And I breath in "Be Still."  And exhale, "For I am The Lord Your God."  In prayer, in Word, in just being still in His presence, I drink of Living Water.  And before I rise from my prayer, I see His gentle reminder right there - an orange cross and blue water.

This will be a journey.  This living as a wife.  This parenting of beautiful children.  This serving of my fellow split beings, physical and spiritual.  This caring for, this stewarding of one who is quite broken physically, her legs walking so well but her hands starting to tremor.  This will be a journey.  I must eat of The Passover Lamb completely.  I must drink of His Living Water.  I must partake of The Bread of Life. I must not face life's challenges with a malnourished spirit.

{Courtesy A. Bryan Photo}

 

O ye beneath life's crushing load,

                                  Whose forms are bending low,

Who toil along the climbing way

With painful steps and slow;

Look now, for glad and golden hours

Come swiftly on the wing;

Oh rest beside the weary road

And hear the angels sing. (It Came Upon the Midnight Clear)

 

This Christmas I wonder if we will gather around the tree our soul lips as dry as the pine needles starting to fall?  I wonder if there will be an emptiness in our chest, a hollowness of soul?  After the toys are opened and the gift cards are gathered, I wonder if boredom will set back in?  I wonder if despite our best efforts we are just weary?  May we sing the carols with tears in our eyes because their truths quench our hearts, leaving us trembling and grateful.

Long lay the world in sin and error pining. 

                        Till He appeared and the Spirit felt its worth. 

A thrill of hope the weary world rejoices, 

For yonder breaks a new and glorious morn. 

Fall on your knees! Oh, hear the angel voices! 

O night divine, the night when Christ was born; 

O night, O holy night, O night divine! 

O night, O holy night, O night divine! (O Holy Night)

I imagine His birth that night.  God arrived in the flesh, His physical body born as ours was born - water and blood and the miracle of gasping breath.  He chose to arrive this way, raw and messy, so that our souls might take a deep breath.  Gasp air.  

I will drink these truths, with an orange cross and blue streams to remind me.  I will.

Find Life.  Find Water.  Find Bread.  Find my Lamb in Christ Alone.

Your Blanket

On your Birth-day two years ago I wrapped you in this blanket, knitted by your Jean, flecked with various shades of purple.  It is a large blanket, perfect for wrapping around your shoulders so that it drapes down to my legs, offering warmth to both of us.  In the hospital we took your picture laying on this blanket, arranging the flowers just so behind your beautiful face.  Daddy staged the image just right then e-mailed it to everyone we knew.  Then Facebook.  Then Instagram.  How proud we were!

You were an absolutely perfect baby.  My pictures of those first few weeks include this blanket in every frame.  Covering you in your basinette, draped over us in bed, in your stroller on our first walk down to the bridge at the end of our street.  You were a gentle nurser, kind to me in sleep.  I enjoyed your newborn stage, this joy surprising as the previous two newborn stages left me sleep deprived, fighting post-partum depression.  We woke up together, wrapped ourselves in this purple blanket as your daddy took the big kids to Mother's Day out and preschool, the house quiet.  We laid in bed.  I nursed you.  I rubbed fancy lotion all over your tiny body.  And there was no thought of anything wrong.  No thought at all.  Looking back, how glad I am there was no whisper in my ear saying, "Heartache ahead."  No there was just you, me, a purple blanket, and a room thick with the pleasant fragrance of milk and lotion and skin.  And I loved you without "Rett" in the background, without fear in my head.

We stayed less than 24 hours in the hospital before heading home to our tiny cottage filled with brown moving boxes.  We moved out of our sweet abode ten weeks later.  Your first year a challenge for our family as fellowship and Florida demanded much from all of us.  But you grew and waved bye, played patty cake, said "mama," and stole the hearts of our God-sent neighbors.  And you slept every night under the weight and warmth of soft purple wool.

Today we celebrate your second year of life.  A year marked by another move.  A year marked by a toxic build-up in your brain from proteins unable to do their job.  During this second year of life you stopped playing patty-cake, waving good-bye.  Your vocabulary dwindled from 12 words to one or two spoken infrequently and usually in distress.  I am sorry for what has been taken from you in this second year of life.  What has been taken from our family by a disease that was never a part of God's original plan.  Although I know God will redeem this year for His glory, I still grieve the losses of your second year of life.  

{Photo courtesy of the talented A. Bryan Photo}

But what about the gains?  What about your milestones and your determination?  Well baby girl, you took your first steps during your second year of life!  And a few weeks ago you took 24 small but independent steps.  You gained weight despite your reflux.  You continue to steal the hearts of so many.  You rallied a whole community, teaching them about Rett Syndrome, calling on their support.  Despite your apraxia you continue to have good hand use.  You feed yourself.  You learned to drink from a straw!  Many will not believe it, but you randomly say short sentences and clearly articulated words. For example during physical therapy you exclaimed "Good girl!," after your therapist and I praised you with cheers.  PT as my witness!!! You said a phrase!  We cheered.  We laughed.  We were surprised.  You said "ribbit" the other day.  Clear as can be when the speech therapist gave you a rubber frog.  It is all up there.  And this is both exciting and petrifying.  Are we doing enough for you?

Lu - what can I say about your personality?  What can I say about your two year old like and dislikes? Well...... You LOVE your baby doll.  Not all baby dolls.  Just the African American one that talks back to you.  You kiss her.  You press her chest to hear her talk.  You would like to hug her but this is difficult for you.  You say "baby," one of your few words left.  Then there is bunny.  Oh bunny!  Your love for him is a funny mix of adoration, need, and abuse.  He is your comforter and your object of biting when your sensory system is on overload.  He is your sweet companion in the night as you use his ear as a pacifier.  You do something with bunny and baby that causes my heart to sing, an act that is a testimony to your intelligence and your sensitivity.  When we give you bunny or baby or really any stuffed animal you find interesting, you grab the object, turn it around if needed, and look directly into it's eyes.  You pause there looking at the eyes of the doll/animal before planting a kiss or a bite (if it's bunny).  You seek out the eyes.  You are relational and this is your beautiful strength.

You sing. And my heart sings too...

Other likes.... BELLA.  She is your dear friend and companion.  Our gentle pound dog has become a service dog.  You pull to stand using her back.  Bella patiently allows you, standing completely still.  You pat her.  You kiss her and sometimes your kisses are bites (hello apraxia) but Bella hardly protests. Bella is officially the best dog ever.  She has my heart and a place on the couch.  Always and forever.

Then there is Elmo.  Elmo and only Elmo.  Played on repeat in the car.  I want to grab Elmo's furry face and plant a kiss for he makes travel with you bearable.  And he makes you smile the biggest smile.  Your Daddy and I love to watch you watching Elmo. 

How about your brother and sister?  They are your greatest champions.  Your therapy partners.  Your encouragers.  They are patient with your screams and frustrations.  They are eager to help.  You bring out the best in both of them.  And you work hard for them.  Here is a game you and your big sister play.  It is good for your balance, your strength, and your walking.  It may not be your typical sister relationship but it is all that is good with humanity.....

While many two year olds are heading off to Mother's Day Out for the first time you are headed to therapy each day.  You attend the Bell Center two hours, two days a week.  At first this setting was overwhelming but you are a champion and are adjusting.  Then there is private therapy - physical therapy, speech therapy, and ABA therapy - multiple times a week.  Then there is Early Intervention Therapy - occupational therapy, physical therapy, speech therapy, multiple times a week.  Some weeks include up to 12 hours of therapy.  For many of them you sit in a Rifton chair with a tray for a solid hour and although you are playing "games," I grieve that you are not able to be outdoors exploring, climbing, running.  

Your brain is not wired to enjoy many of the things other children your age enjoy, so I spend great mental energy trying to figure out those things that give you pleasure.  Today on your 2 year old birthday, these include family, Elmo, bunny, Bella, spaghetti, your babysitters, Nutella, your therapists, baby, and of course, your purple blanket.  

I am not sure what this next year will bring for you, baby girl.  Amongst the gains in your 3rd year of life there will surely be losses.  Will you always be able to reach for bunny, find his ear and place it in your mouth?  The fine motor skills needed for this simple task are overwhelming.  Will you occasionally continue to say Mama?  Will your legs continue to support your weight, coordinate together in walking?  Will we find a good way to help you communicate?  God has not revealed these answers quite yet, baby girl.  So, I will walk in faith and peace and joy because Christ and Christ alone gives me these.

I will not grieve loss until loss is apparent.  I will not fear tomorrow because tomorrow is in His hands.  I will not say, "but I cannot" because He can.  And on this 2nd birthday He loves you more than even I do.  His eye is on the sparrow and on the little girl resting underneath the purple blanket.  His eye is on you and you are precious in His sight.

Our scripture for you during your 3rd year of life:

"Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." Hebrews 4:16

This night

We set our alarm for 5 a.m. but awoke to water soaked sheets at 4:30 a.m.  You were making your way into this world and we were more than overjoyed.  No induction!  We were on our way.  

I would labor all morning while periodically glancing at the ring on my right hand, the pearl ring your Daddy gave me right after we settled in to the Labor and Delivery room.  You made your way gently into this world, breaking my water in stages.  And there was so much joy in that room as you made your way down.  So much joy.  

You arrived at 1:13 pm as I watched you from the mirror overhead, something I was too embarressed to do with your brother and sister.  I gasped with wonder at the miracle of it all.  At the first glance of your dark hair.  Dark hair!!!  She has dark hair like brother and sister!!! I saw your lips right away, all puckered in and kissable.  How grateful I am for witnessing the miracle of you emerging from me.  How thankful I am to have held you so tight against my flesh as inexplicable exhaustion swept through every molecule of my being.  There are no words for the weariness and disorientation of post-labor.  But you were right there in my arms, wailing as I sang.  Wailing as we prayed.  Wailing as I tried to nurse.  Luisa Ray Morlandt, we could not have been more joyful amongst the cries.  

I'm not sure if you will read this some day or if I will read it to you.  I'm not sure if you will scroll down the screen with your fingertips or your eyes.  But this I know for sure, I love you baby girl.  You are most wanted.  Most cherished.  Most loved.  You are God's gift to our family.  And two years later.  Rett Syndrome later.  No steady walking later.  Lost your speech later.  I wouldn't change a thing.  You are my girl.  Most wanted.  Most cherished.  Most loved.

A Celebration

I dress Luisa in purple head to toe.  Her sister in purple pants, denim blouse, and a violet bow.  Vincent sports a deep purple t-shirt and I pull out an old favorite shirt for me.  Yes, purple for the occasion.  The day is warm but not unbearable, the temperature speaks of Fall to come, making us ancy for cool breezes, pumpkins, and jeans on the horizon.

We awake early to position the tables and chairs, hang the last minute decorations, set everything just right.  Tony leaves to post direction signs and pick up lemonade while I go upstairs to dress the children.  In the middle of the hustle bustle I look out the window to see God's hands and feet right there on our front lawn.  Neighbors arriving with leaf blowers and trailers, quilts and raffle tickets and hands empty ready to hold babies, hang decorations, offer whatever might be needed.  Friends and coworkers stepping out of their cars with morning muffins and face paint and lollipops for the children.  And I hold Luisa and I say, "For you baby.  For girls everywhere who are not forgotten.  You are not forgotten."

Occasionally I settle into bed early and pick up Luisa's baby book, filling in blanks here and there.  Family Tree page.  The World During the Year of Your Birth.  First Visitors.  First Outing.  First Holiday.  One Month.  Two months.  Five Months.  First smile - 5 weeks.  Check, check, check, check.  Rolled Over - check.  Sat unassisted - check.  Stood up - 19 months. Then, blank, blank, blank.  So many blanks on the developmental milestone page.  Monthly summaries of her first year grow difficult to write around 10 months of age.  And honestly, it makes me terribly sad.  Tony touches my shoulder.  "Sarah put it away.  Give it time."  I close up the book, placing it neatly back in the box.

A few weeks ago we hosted a lemonade stand to raise funds for Rett Sydrome Research through the International Rett Syndrome Foundation.  If you know me, you know I like to plan a party.  After numerous, generous donations from our community we set up a lemonade stand right there in our side yard.  Balloons, a bouncy house, tables with crafts, face painting, slides, swings, ball pit, and loads and loads of lemonade and lime-ade.   It was a celebration.  It was a fundraiser.  A giant play-date.  One attendee called it an old-fashioned barn raising.  After four hours of hugs, numerous refills, and enough bouncing to wear out even the most energetic child we gathered up the vase with Luisa's picture, stuffed full of love offerings.  Cash and checks saying, "This is what we can do.  This is what we can do to help you, Luisa.  This is what we can do to help you, sweet girls with Rett Syndrome.  This is what we can do.  Give to a cure.  Give to the research.  Buy mice and microscopes and glass slide plates to stain with genes and things we don't understand.  This is what we can do."  So we count the checks, the cash, the online donations and we hold our breath.  Really?  This is generous love.  This is extravagant care.  This is a pouring out.  $4,136 as of the day of this posting.  $4,136!!!

 For me it was a realization.  Her baby book may be empty of the traditional milestones but it will be FULL of love and adventure.  Two other baby books sit on our shelves, TWO!!! How blessed we are.  And the third is being written.  It will look quite different than the other two but it will not be EMPTY.  It will not be just tears and disappointments but rather love and success.  milestones reached and perhaps lost, maybe to be regained again someday.  Adventure and laughter.  Along side her story of struggle, her baby book will contain images of Lemonade Stands in her honor, of people smiling and holding her and blessing her with their prayers.

Lemonade Stand day was our announcement day.  Our family is changed, our little girl no longer "typical (whatever that means)," our hearts broken but mending.  We received professionally, edited pictures from the day.  Yet another gift offering.  And I will print them.  And glue them.  And write cute captions.  And maybe someday she will read it and maybe not but nonetheless, the joy will be there.  The love so generously outpoured.  I will read it on hard days as her shell thickens.  I will read it and remember how many love her, pray for her, cheer for her.  I will look into the purple hued pictures and say, "Milestones and blanks or not, this life is significant.  This life is good."

(all photos courtesy of Claude Hupp - Thank you Claude!!!)

Give What They Cannot - Part 3 of 3

Imagine for a moment having your hands tied in front of you, your feet tied at the ankles and your mouth covered with duct tape. It's the stuff of horror movies. No? Yet this is a picture of how girls with Rett Syndrome must feel. Or maybe they feel as though they are fighting their way through a thick viscous substance that makes every movement a battle to push forward, leaving them disoriented and cloudy.  Girls ,and a handful of boys, with an inability to move their limbs in a purposeful way. Loss of hand function and loss of speech. Beautiful words, sentiments, feelings trapped in a mouth that will not let them out. Feeling happy? No words. Feeling sad? No words. Feeling hurt, angry, exhausted? No words.  Just your eyes.  And wow, do those eyes pack a punch....

 But you - the readers of this blog.  You most likely have words. You have fingers that work and legs that move as you will. What can you do for those less blessed? 

Tell others about Rett Syndrome. Educate people about other disabilities you have encountered.  Use your mouth with its ability to articulate complicated sounds.  String those sounds into words then make sentences that go on forever as you educate and impassion others.  People need to know so when they encounter a "Luisa" they understand that despite her physical limitations she hears, she understands, she desires to communicate.  Knowledge leads undiagnosed families to a place of help and community.  People need to know because their eyes should not always look away.  Did you know that Rett Syndrome is the leading cause of severe disability in girls?  (www.girlpower2cure.com).  Yet many of us have never heard of it.  Maybe if we spread enough awareness more people will not look away in fear and discomfort at the girl in a wheelchair with hands that never seem to stop their complicated dance. 

Share this post and this post and this post with one simple click because you can look at a button and press it without having to will your fingers in a slow, laborsome process. Share www.rettsyndrome.org.  Share so people will understand.

Walk with your beautiful, functioning legs in a Strollathon that supports the International Rett Syndrome Foundation (IRSF). If you earn a wage will you support those girls who cannot, by giving to the Strollathon? If they could give to their own cure they would.  Want to know why it's called a Strollathon?  Because many of our girls cannot walk.  So mommas and daddies and grandparents will stroll behind them, pushing their wheelchairs or strollers.  We will dress them up in purple and bows and we will feel proud and happy because we love them so.  Will you come along too?  Luisa and I are joining TEAM LUISA at the Strollathon on September 27th in San Antonio TX.  Wanna stroll with us?  Please come!  Wanna see Luisa?  Please come!  She will smile at you but she will not say, "Hi," with anything but her bright eyes.  They are enough though.  You will see.... Donate to the Strollathon here.

Here's another idea:  buy lemonade and drink it with your mouth that knows how to swallow and not drool. Most likely you are able to sip from a straw.  Our lemonade stand will have paper striped vintage straws and Luisa knows how to drink from one!!!  Come see her perform this feat, one of many I used to take for granted.  Vincent and Sophia will be serving lemonade in honor of their sister on Saturday September 20th from 10- 2.  UPS is donating flyers and yard signs and banners.  Zoes will provide Limeade and Publix and Piggly Wiggly, lemonade.  Party Time of Vestavia is donating a BOUNCY HOUSE!!!! Their generosity touches my heart.  Come to our stand and bounce and drink lemonade and make a difference.   100% of proceeds go to the International Rett Syndrome Foundation.  Busy that day but still want to support our lemonade stand?  Click here and donate online.

Live in Birmingham and want a fun night out?  Join us at the Raise the Roof for Rett Gala benefiting the Suki Foundation on November 1st at 6 pm.  The Suki Foundation supports local research through Children's of Alabama.  Read more about the event and buy tickets here.  Remember the wonderful Rett Clinic I've been telling you about here in Birmingham?  Well the Suki foundation works to make sure it stays here and for that I am most grateful.

Those who knew me "before" diagnosis will find this post rather odd.  I've never been one to solicit funds or support of any kind.  Honestly I'm quite uncomfortable asking people for things.  But I'm on fire for Rett Syndrome research.  Why?  Because it is something I can DO!!  When you walk into a doctor's office, receive a devastating diagnosis, and then are told, "There are a few more tests we will need to run - an electrocardiogram, an EEG every year, blood work.  These will help us manage any serious symptoms."  But her silence?  Her inability to walk?  Her difficulty in kissing her mother without biting?  Her inability to hold on to a swing or ride-on tricycle?  Her inability to grow brain mass the way her typical peers do?  Her challenges in playing with her siblings?  Well there's nothing we can do about that.  So go home and manage a few of the symptoms as best you can.  And envision wheelchairs, and computers that will speak for her and diapers and a frustrated little girl.  Envision these things with no cure.  NO THANK YOU.  I will not.  I will pray.  I will walk.  I will buy lemonade for the same price or more than the latte I buy everyday.  I will click on DONATE because I know there are scientists working hard to find the cure.  And I know they are making advances.  I want to see her walk and talk and use her hands.  Raising funds for research is something I can DO, with God's grace and favor, to make this happen.

And if lemonade and Strollathons are not your thing?  Will you pray for these girls and the scientists in labs 9-5 looking at genes and mice and wringing hands?  It's funny.  When I pray for the scientists I envision them in my head.  I pray for the scientists who make a breakthrough.  I pray they will be believers in Jesus Christ and will know that it is His hand that has given favor in the lab. 

How about special needs children who do not have Rett Syndrome?  Do you know any?  "The least of these" are everywhere.  Down Syndrome.  Rare genetic conditions.  Undiagnosed.  Epilepsy.  Cerebral Palsy.  Autism.  Maybe you could bless a mother's heart and get down on the level of that special needs child and look in their eyes and say hello?  Will you say their name and smile and tell the mother something you see in their child?  Not she looks pretty or her hair is so nice.  But instead, she is smiling!  Wow, I can see her personality!  She is God's little one.  I am so glad I know her.  I wonder what she is thinking?  I remember when she was born.  You are uncomfortable.  We get it but we need you to see them.  We are afraid our children will be ignored and unseen because of your fear, uncertainty, and sadness at seeing their brokenness.  See a wheelchair in your neighborhood?  Bring a meal.  Help with the other children.  I can speak from personal experience, this is a blessing unable to be measured.  This is God's hands and feet.  This is His kingdom on earth.

This last post was a post of doing.  Of walking, drinking lemonade, donating, praying, speaking, sharing, DOING.  Luisa cannot DO many things but I can.  I will.  Join me?

These parents and families express it better than I ever will.  

Fear and Hope - Part 2 of 3

Today is a difficult post.  Difficult because there are no hard absolutes in predicting how Rett Syndrome will progress in each girl.   Difficult in that research and genetic discoveries are ongoing, always changing the way we look at and treat Rett Syndrome.  Difficult because this post highlights two emotions at opposite poles: hope and fear. 

The Course (the fear)

Historically, scientists used 4 stages to describe the course of Rett Syndrome. This staging is now considered out of date and Dr. Percy (our Rett Specialist) encouraged us not to dwell on "staging." Girls progress through this disease in very different ways. 

The general course includes typical development with no signs of anything wrong for the first 6 months of life.  Our Luisa developed typically until around 12 months of age. She crawled a little late and before crawling on all fours, she rolled around the house. I found this odd and perhaps concerning.  It was at 16 months when she was not pulling to stand that red flags started waving and I called Early Intervention for assessment.

 Next the girls go through a period of stagnation in development. Luisa definitely stopped meeting developmental milestones around 14 months of age. It was as if she was stuck. During this time girls will often go through a period of withdrawl and will display autistic-like characteristics. Luisa withdrew from us in the Spring. Although she maintained eye contact and social smiling, she no longer wanted to be held and did not seek out reciprocal activities such as reading together. I am so very very thankful this has passed for Luisa. I am thankful God has granted us a sweet, mutual relationship over the last 5 months. 

The "fear" mentioned in the title?  The next stage is Regression.  Just the word makes one fearful.  I am learning, though, that there are no absolutes in this disease and while one girl may have a dramatic regression stage, another will lose skills in only one area while continuing to make small gains in another area.  The regression stage can be sudden or gradual. Girls may lose previously acquired skills, such as talking, vocalizations, crawling, and/or walking. During this stage a girl's hand function and fine motor skills decline and stereotyped hand movements begin.  Regression can occur at any point or over a course of time until they are 3 1/2 years old.  At or around this age, girls plateau.  This plateau will last a number of years -- for many girls most of their lives. During this time girls may learn back previously lost skills or may learn new skills. Later in life, girls go through a period of motor deterioration where scoliosis might take over and many girls who could previously walk lose that ability. During this last stage cognitive, social, and communication skills do not decline.

Again, it is hard to say how Luisa will progress through these "stages." We've met girls who when toddlers, could walk and run then woke up one day and could no longer stand up.  Then there are girls who never learn to walk, and girls who learn as late as eight years of age.  Many girls seem to have an "overnight" loss of hand function, while others lose these skills gradually over time. One mother of an older girl with Rett Syndrome said her daughter never went through a clear regression. Her daughter showed global developmental delays as an infant/toddler but has made slow gains over the years. This last scenario seems easier on the heart and is currently my prayer for Luisa.  Common among all girls is lack of speech.  Very few retain the ability to communicate verbally.

     

As for Luisa, we can pinpoint stagnation and withdrawal last Spring. She definitely has shown regression in her speech skills as she once said 10-12 words, and now has 3 - momma, bunny, and baby. No sweeter words have ever been spoken by a little girl. I love these three words. Occasionally Luisa will say "Daddy."  I've never seen Tony jump so quickly.  

A few weeks ago we noticed some decline in Luisa's gross motor skills. She became uncoordinated in her assisted walking, and when sitting up she sometimes had to brace herself to keep from falling over.  She no longer climbed up the whole flight of stairs. This lasted for about two weeks until last week when her coordination and weight bearing improved during walking tasks.  I try to breathe normally and remember that just because she is having an "off" week doesn't mean she's about to lose everything. For several weeks we were forced to used a walker during physical therapy.  Last week we were back to minimally assisted walking.  Many describe Rett Syndrome as a rollercoaster.  Yes.  Yes, that is a good description.

The Genetics

I will not attempt to explain the genetics.  Instead here is a readable article that gives a brief overview of Rett genetics:

Rett Syndrome:  Why Girls?

The short answer to, "Is Rett Syndrome genetic?" - YES because there is a mutation on the MECP-2 gene that then leads to Rett Syndrome. "Does Rett Syndrome run in families?" Not usually. The majority of cases are spontaneous mutations that can occur in any family at any time. As sited in the article linked above, Rett Syndrome is "genetic roulette." 

In rare instances the mother and father can be carriers of the mutation and in that case there is genetic pre-disposition to having a child with Rett Syndrome.  This is only the case in a minority of families.

The Research (the hope)

Since discovering that MECP-2 mutations cause Rett Syndrome, scientists have replicated this syndrome in mice. Then after many a Gala, Lemonade Stand, and Strollathon and along with research grants, and generous "gifts," brilliant scientists developed a drug with one goal - Reversing Rett Syndrome.

After being injected with this "miracle" drug, medical mice no longer sat for hours and wrung their hands.  They learned to walk normally.  They appeared less anxious. Oh wonderful scientists!!! 

There are several drugs and therapies in the human phase of trial.  Older girls with Rett Syndrome are boarding planes with their families and flying to centers in cities like Boston and Houston to be given either a placebo or an experimental drug.  To undergo tests and blood samples and shots.  How brave.  What hope these families bring to the rest of us!

Want to see video of the mice before and after this "miracle" drug?  Want to read about several advances in Rett Syndrome research?  Click the link below and scroll down. 

Mice, Videos, and Research

An experienced Rett Syndrome mother recently told me that in today's world a Rett Syndrome diagnosis is devastating for a family but someday a mother and father will breath a sigh of relief when their daughter is diagnosed.  Rett Syndrome?  Oh, OK!   There's a cure for that.  Hope.  Hope.  Hope....

******

Recently I told Tony that I was in denial.  Denial about Rett Syndrome's "typical course," (a misnomer really because the course is anything but typical).  I want to believe Luisa will not lose anymore hard-won skills.  She stands up and climbs stairs and says "Momma!" and grabs my hand on which to plant one of her own unique kisses.  She laughs.  She crawls over, reaches up for her bunny, and pulls it out of her bed.  She can hold her cup.  She does these things and my heart soars.  And I feel blessed and happy and hopeful. 

But for Luisa's tomorrow, these things are not guaranteed.

Rett parents and other special needs parents face everyday a fundamental truth mothers and fathers deny about their healthy and typically developing children (I deny about Sophia and Vincent).  We have no control over our child's tomorrow.  Their health.  Their behavior.  Their choices.  Really we have no control.  Influence, yes.  Control, no.  Downer?  Well maybe.  Truth.  Most definitely.

So I think I will give Luisa's tomorrow to Him.  Sophia's tomorrow.  Vincent's tomorrow. And if the grief should hit hard and Luisa should lose much I will trust Him with the why.  It is not my burden to bear.  And I will say, through clenched teeth and stubbornness "He is good."  He is good.  He IS good.  Give me the strength to say it God.  You are good.  You ARE good.

This is truth:

Many, O Lord my God, are the wonders You have done.... too many to declare!

Psalm 40:5

Yes.  Too many to declare!  But here are two.  They are wonders.  And He is good....

*******

Oh Lord give us peace in this Rett Syndrome "course," and hope for the "cure,"  And please, a miracle.  A miracle for our girls. 

If you are a "fix it" kinda person, a "let's do something about it," kinda person then you will like the last post in this series, Part 3 of 3...