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.