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.

O Holy {Sleepless} Night....

We have circled back to sleepless nights.  The duo which I call "GracieLu" have coordinated together to bring on a new level of exhaustion in this cozy, often rowdy, rarely germ-free house.  Christmas will always be characterized by babies in my memory and with babies come sleepless nights.  Three out of four of my children were newborns at the time of Christmas (the girls) and Vincent was but 6 months old at his first Christmas.  Having just fallen asleep on cold nights in December I would frequently awake to baby cries, stumble across the hall, glancing over to see the lit Christmas tree in our living room.  Often I would bring the babies out of the nursery to sit quietly in front of the tree.  Nursing, singing, falling asleep sitting up together.  This was the joy and peace of Christmas.  These were the sleepless, holy nights...

Last night was sleepless in a new way.  Luisa slept from 7-10 pm then not at all. Grace was up frequently, awoken by Luisa's screams across the hall.  Our Famed Warrior was happy but alert through the night, her screams really shrills of delight?  Of urgency?  Of curiosity? Her screams, her cries lack the differentiated communication you find in many babies.  They all sound the same so you are left guessing.  We seem to have entered a new phase in our Rett Syndrome journey.  Perhaps it will be quickly passing, perhaps it is indicative of things to come, or perhaps it is but a bump in the road.  I will not go into all the details but we are trying a new medication, starting new therapies, seeking the advice/help of others who have gone before us on this journey.  One aspect of this new phase/bump in the road/who really knows? is increased night wakefulness.  They are sleepless yet holy nights for we are called and set apart to His purpose in caring for our children, for caring for our Luisa....

This video shows how Luisa is losing her hand function.  Notice how she struggles to get food to her mouth.  Notice the tremor in her left hand.

If I were to tell the story behind the pictures I would share with you the joy of Christmas in our home.  The cookie decorating, the presents, the surprises, the snuggles, the shrills of delight.

But if I were to be authentic, if I were to be vulnerable I would share with you a more complete picture.  Alongside the joys, there are heartaches that seem "holiday specific."  For months leading up to this Christmas Day I painstakingly picked through Amazon for toys, items that would please Luisa.  This is a task full of a grief only fully understood by others walking the special needs journey.... On Christmas Eve, I scroll through Facebook with images of girls with Rett Syndrome who seem to be doing so much better than our Luisa right now.  I scroll through and see Luisa's peers, typically developing little girls or little special needs girls with far less severe challenges opening doll houses and stuffed animals and tea cup sets.  Their hands grasp their new toys, hug them tight, their eyes dance with joy, they sit and play.  Grief of physical disability.  Grief of mental disability.  Grief of what could have been versus what is given sovereignly and lovingly from His hand.  This is Christmas for so many.  Gratitude in one hand, heartache in the other.

Lest I feel sorry for myself, sorry for Luisa, sorry for the challenges, I am reminded of the Holy, Sleepless Night 2000 years ago.  Who better held joy in one hand while simultaneously holding sorrow in the other?  Who knew both the holiness of her calling but also the brokenness of the world in which she lived than Mary, than Joseph?  The Bible tells of her treasuring her newborn babe.  She treasured the confirmation of shepherds sent to adore and worship this Son that was both fully God and fully man(Luke 2:19).  I picture all the beauty and sweetness that holy night of baby legs, toes, and eyes.  I picture her cradling Him close on many a holy and sleepless night.  This is what Mary held in one hand - treasure and beauty and joy.  In the other she held something entirely different.  In the other Mary felt the weight in her palm of a world gone astray, of kings hunting down and killing baby boys (Matthew 2:16-18).  Of unexpected detours to a stable not an inn, to Egypt not Galilee (Matthew 2:13).

Long lay the world in sin and error pining

Till He appeared and the soul felt its worth....

Lean in and I will tell you a little secret.  I will whisper it quite because it is a message many do not want to hear.  Suffering.  Suffering brings deeper understanding.  Suffering brings meaning.  Suffering brings hope.  Do I really suffer?  Not really.  I am healthy.  I am loved.  I hold many a delight, many a joy in my hand.  But Luisa?  Luisa suffers.  This is true.  And when I watch her, when I hold her near on many a sleepless, holy night, I think to myself, "This world is a mess.  Something has gone astray in our very DNA."  This world has been decomposing since the first bite of rebellion, tart in our mouth - an apple with worms. This world with it's brokenness.  We hold safe Christmases in our cozy homes with cider and feasts in one hand while the world holds in it's palm the refugees and the slaughters and the hunger of real people, real children.

Where is the hope?  Are there really broken bodies, feeble minds, hands no longer working and then death and then nothing?  When will it all be made right?  I am weary this Christmas.  Weary of political fighting amongst images of grown men, desperation in their eyes putting their toddlers, their pregnant wives on boats crammed too full.

Chains shall He break for the slave is our brother

And in His name all oppression shall cease

Weary of the depravity of man playing out in violence against children, innocents, friends.  Weary of disease, of sickness, of death too early.  Weary, weary, weary of Rett Syndrome and how it is taking my girl little by little.  The weary world rejoices?!? How?  How will we rejoice?

There on that holy, sleepless night was a manager and in it lay a Savior.  In it lay Hope.  In it lay our Answer.   The greatest gift ever given to a world weary with all the hurt.  Weary with their inability to get it right.  Weary that try as we might, we continue to do wrong, to hurt others, to hurt ourselves.  A world weary down to the fibers of it's very being, weary down to the ocean floor now given over to the laws of science gone haywire.  Weary.  Weary, holy night...

A thrill of hope 

The weary world rejoices

REJOICE!  Because in your core you know you want it to be made right.  REJOICE because it is made right through the Christ babe given to us in a  manger through His atoning sacrifice on a cross.  Luisa - the brokenness called a mutation that is encoded in every cell of your body? REJOICE!  Thrill in hope.  Jesus came for you!  He was wrapped up and given so that you might have hope.  You will be made right someday....  

For yonder breaks a new and glorious morn...

Glorious morn.  This world with all it's suffering grieves God too.  He has been working, fighting to make it right from the minute it went haywire.  And finally on that holy, sleepless night so long ago, God began the rescue of His people, the beginning of a new, glorious morn.  For from a manger grew a man who laid down His life so that we might someday stand on the shores of a new and glorious morn.  Where we are given new bodies.  Where we are finally and completely freed, from pain, from suffering, from the brokenness of this world, from the sin that has enslaved....

Fall on your knees...

Fall on your knees you broken, you hurting, you weary.  I have chosen to do just that.  Fall on my knees.  Fall in worship to the Creator, the Judge, the Holy One who will make all things right.  Sleepless, holy nights will one day give way to one, long glorious morn. This is the story of Christmas, the beginning of morning, the beginning of HOPE...

So in my weary, sleepless nights I will remember it is but temporary.  The Gift has been given.  The Price has been paid.  The Promise sure.  A glorious morn is around the bend...

Then rang the bells more loud and deep

God is not dead, nor doth He sleep (Peace on Earth, peace on Earth)

The wrong shall fail, the right prevail

With peace on earth, good will to men

{lyrics from: I heard the bells on Christmas day}

How is Luisa?

I brace myself for the question, a literal bracing or stiffening in my body, "How is Luisa?"  How touched I am that people ask.  How sad, upsetting it would be if they didn't.  And yet, it's the hardest question to answer.  Do I stay positive, sharing the answers to prayers, the walking, the increased stability?  How she can now stand up in the middle of the room, bend over and pick up her duck?  Or do I mention her struggles  - that she falls often, runs into things, and is constantly trying to maintain balance - and seem like a downer?  What about those aspects of what's happening to her body that I don't understand, are they just a passing phase not worth mentioning?  Her progress, her "regression," it varies week to week, so nothing I report about our little girl feels definitive.  Next week her increased stability is traded for falling over in the middle of the floor and ataxic walking (much like a person under the influence of alcohol).  And then the next day she's back to herself.  And always I wonder, what will it be when this "regression" is over - walking or not, hand use or not, continued sensory processing issues or not, irritability and anxiety or not?

Since so many people ask from sincere hearts, since so many ask because they really want to know, they really do pray for our little girl - I think I will share with you how Luisa is doing today.  And in the process I will share with you a bit of how our family is coping/dealing.

1.  Speech - We are technically still in the regression stage and will be until Luisa is 3 or 3 1/2.  This regression stage has many challenges:  behavior challenges (see below) and the loss of skills.  So far, Luisa appears to be losing skills slowly, hardly noticeable until you look back at old pictures and videos.  Most pronounced and most noticeable though is Luisa's loss of speech.  The day after she was diagnosed, July 4, 2014, I wrote down all the words she was saying, they numbered 12.  Today she is no longer using any meaningful words.  "Momma" is gone.  I'm not sure when it left but I haven't heard it in months.  She frequently puts her lips together to say "baby," but no sound comes out.  The silence aches our hearts but I'm not giving up hope.  Everyday we work on imitating.  On the changing table I say, "Mama, mama, mama, baby, baby, baby."  Luisa studies my mouth intently and will imitate with her sweet lips. Sometimes Luisa's speech therapists and ABA therapist will ask Luisa to talk.  Usually we are asking her to look at her loaner eye gaze device or choose a picture.  In response to our requests she looks at our eyes and begins to move her mouth, popping her lips open and closed, looking at us as if we understand.  No sound comes  out.  It is sweet and heartbreaking all at once.

My prayer for Luisa is that we can find a way for her to communicate her wants, needs, and opinions.  Luisa was tested for an augmentative communication device that will use her eye gaze paired with pictures to communicate.  Basically the computer screen contains buttons of pictures representing people, objects, actions, feelings, and social phrases.  Luisa looks at the picture that communicates what she is thinking, the computer tracks her eye gaze, and once she has gazed intentionally at the picture for a set amount of time the computer will say aloud what the picture represents.  In the words of the speech therapist that tested Luisa for this device, "she blew the test out of the water!"  An answered prayer is that we acquired her augmentative device Wednesday of last week! We are busy programming and exploring and enjoying Luisa's new "voice."  There are times Luisa gets quite frustrated with the eye gaze device.   She is, after all, learning a whole new language where she has to memorize motor pathways to select just one word or phrase.  Then there are times she amazes us with her speed and clear intent with the device.  Please pray she will have success on this device and we will have patience and determination in teaching her how to use it.

2.   Walking - Luisa is walking!!! She learned to walk shortly before her 2nd birthday.  Over the last few months her stability has increased.  She can bend over and pick up objects from the middle of the floor and she has started to stand up in the middle of the floor!  Uneven surfaces still trip her up.  Luisa has "bad days" when her stability is quite off.  On those days she falls in the middle of the floor and her legs give out from under her when she is walking.  There are times she reaches for a table for stability, misjudges the distance and falls forward on the edge, nicking her forehead or chin.  Our prayer is that walking will become so automatic that if she neurologically regresses more in the next year, walking will stay.  Also we are prayerful that she will be protected from any serious falls.  

Rett Syndrome is puzzling in it's progression.  For awhile we were vigilant about putting up the wood gate at the bottom of our stairs.  Luisa's newly acquired skill of climbing the stairs was being tested everyday and we wanted to make sure she was safe.  I'll never forget losing sight of Lu for a short time while we were both downstairs, only to find her upstairs a few minutes later - she had climbed the whole flight of stairs!!!  Luisa started climbing stairs shortly before she learned to walk, a few months after her diagnosis.  Around the same time she was also climbing up on chairs and standing up.  I delighted in this typical exploratory behavior.  These daring feats surprised and encouraged us.  We were so proud.  And then the skills just disappeared. No more crawling up stairs.  No more crawling into chairs.  The wooden gate has been stowed away - no longer needed.  Back and forth, back and forth we go.  Yet we do not stop.  We are back to teaching her to crawl up the stairs using her hands and knees.  I am hopeful that someday we will be forced to find that wooden gate we've put away, to keep our adventurous girl safe.

3.  Behavior - This is an area that brings much bewilderment.  Luisa is not our first two year old to parent and certainly not our most strong-willed.  So many of her behaviors, sitting in the middle of the floor crying and screaming because she cannot have what she wants (either because we don't understand exactly what she wants or because no, you need to work right now, not watch Elmo) is typical two year old behavior.  But there are other behaviors that extend far beyond typical two year old antics.  Gastro-intenstinal issues that sneak up on us even as we try to be vigilant cause her great physical discomfort and pain.  It sneaks up on us and suddenly we have a full day of crying, and I beat myself up - how did I not notice we were headed this direction? 

Anxiety.  Specifically anxiety in the car.  Luisa practically lives in the car as we shuffle to and from therapies, take big sister and brother to school, and around for various family activities.  God has been most gracious in sending people to help us with some of the transportation load but large hours in the car are inevitable.  Luisa hates the car.  She screams and cries.  There are things that seem to help, such as an Elmo video, having a duck to hold and bite, or her bunny.  But many times even these things do not work.  I feel so torn about this issue.  My heart breaks because obviously the car causes her anxiety but on the other hand, we can't stay locked in our home, church and therapies are non-negotiables.  It is a helpless feeling and it puts everyone's nerves on end.  When I say "scream," I mean ear piercing screeching.  Please pray this intense dislike for the car improves for Luisa and for our family.  Please pray for mood regulation issues, a common problem in girls with Rett Syndrome.

4.  Hand Use - Alongside speech, hand use has been the most significant change in the last year.  Her hands have become increasingly limited as the hand movements that characterize girls with Rett syndrome - constant movement or frozen posturing - are taking over Luisa's waking hours.  Luisa clasps her hands at mid-line for most of the day, usually while squeezing a duck, moving it rhythmically to her mouth and then back down again and then to mid-line as she clasps and squeezes her hands together or her duck.  When the duck is removed from the equation, her hands continue in their nonsensical pattern but Luisa grows agitated.  She needs the duck for the mouthing feedback and honestly, I think to cope with her hand movements.  Luisa still self-feeds.  She is adamant about self-feeding.  I would say about half of the food actually makes it to her mouth.  Often she will drop her food before it leaves the area of the tray or drop it just before it reaches her mouth.  She rakes rather than pinches to pick up food.  Really though, her self-feeding, limited as it is, is something to be celebrated.  I am thankful she is still able to do this task.  We are extra vigilant as to how much food she is actually consuming and we eat all day long, rather than scheduled meals.  At the end of every meal we spend time feeding her ourselves.  She's a sweet little bird at this point.  Opening her mouth willingly, after being given the opportunity to do it herself.

One challenging thing about Luisa's decreased hand use is her inability to interact with others appropriately.  Think about it for a minute.  How much of our connection to others is based on physical touch - a handshake, a pat on the arm, a hug, a touch to the cheek, the holding of your child's hand?  We instinctively need and desire to give touch.  Luisa is no exception, she longs to touch others.  Recently we were trying out a new sitter.  I stay home and observe how new sitters interact with Luisa for about a week or two before leaving them alone with her for short stints.  During one of these supervised days I overheard the new sitter scold Luisa for hitting.  Luisa wasn't angry when she hit the sitter.  She wasn't upset in the least.  She was trying to touch the sitter, perhaps put her arm around her neck as the sitter carried her.  Unfortunately her hand and arm frequently move at speeds she cannot control and overshoot their destination.  Rather than caress our face, she hits us across the nose.  Rather than pick up the toy off the table she knocks it down along with everything else on the table.  If gravity is working against her, she will drop the toy every time.   Children her age will often flinch as Luisa's hands go up.  She most likely wants to greet them with a touch and her hands and arms just won't cooperate.  I'm there to explain but it pains my heart to see her so misunderstood.  If people would look into her eyes they would understand what her hands cannot communicate as she pierces her bright blues into your eyes with intent - "hello!"  "I like you!"   I pray Luisa will always be able to self-feed, pick up her duck, move her bunny to her mouth for comfort.  I pray for grace for those who interact with her, that they will understand her limitations.  

5.  A Cure - Tomorrow we will host our 2nd Lemonade Stand - "Lemonade for Luisa."  I think back to last year's success.  Almost three months post diagnosis we were gathering sponsors, coordinating an event, setting up a fundraiser.  Underneath all the lemonade and raffles and donation jars we were still processing, still wondering what this diagnosis would mean for our little girl, for our family.  A year later I cannot say we have "arrived," at some sort-of acceptance or higher-level of understanding.  We have, however, found a "new normal."

I think back to our stand last year.  The amazing, overwhelming show of support.  God's hands and feet loving on our family, blessing Luisa.  That lemonade stand was an important step in healing for our family. We needed to do something tangible for our girl.  We needed to invite others in.

This year we will once again open our yard, offering lemonade and coffee, muffins and sugar cookies.  Luisa's friends have been hard at work crafting for our lemonade stand. Their art work will be on display, donated with the hope for a cure.

For you see our family, families everywhere never, ever give up hope that a cure will be found.  And before that cure is found we long for medication specifically tailored to the mutations found on the MECP-2 gene.  Medication to change the chemistry and cellular make-up of this disease, reducing or wiping out just a few of the many daily challenges our girls face.  This is not a "pie in the sky" dream.  This is reality.  Articles here, here, and here, show evidence of the radical advances towards pharmaceutical intervention and a cure for our girls.  I believe giving to this research is a most worthy cause.  Why?  Because of this girl....  And this girl.... And this girl.... And this Famed Warrior, my beautiful girl....

I believe it is a worthy cause because medical advances in one neurological disease, will lead to breakthroughs in other diseases - specifically Autism Spectrum Disorder, Parkinsons, and Anxiety Disorders.

I believe that if we don't raise the funds for research who will?  Rett Syndrome is classified as "rare," because only 1 in 10,000 live births are affected by this disease.  Government agencies see "rare" and say "no funding."  So guess what?  Families step up with passion and purpose because rare just doesn't mean anything when it is your girl who is suffering.  Rettsyndrome.org has invested $35 million dollars for Rett Syndrome research.  Thousands of lemonade stands and Strollathons contributed.

And finally I would say this.  If you are praying for Luisa will you be praising too?  Because God is most worthy and He has supplied everything we've needed for this journey over the last year.  Many of you reading this blog are God's answer to our prayers.  Meals brought, car pool for our big kids, your friendship, your notes of encouragement, your donations to rettsyndrome.org - they've all served to encourage us and meet our needs.  More than anything God has given us gracious gifts of answered prayers (walking, eye gaze communication devices, competent, empathetic therapists).  But where the answer has been "no," He has been more than enough, supplying the strength and peace we've needed each day to face these challenges.  God is teaching us contentment, submission, and joy in all circumstances.

I will lift a glass of lemonade tomorrow morning and pause to reflect - God is good all the time, amongst wringing hands and lost speech, ataxic walking but eyes so bright.  All the time, God is good.

The Dropbox

Tony and I took a trip to Italy in 2007 to celebrate the end of dental school.  I was what the locals called incenta, pregnant with Ana Sophia, although it was too early to know I was carrying a little girl.  We toured several cities including Florence, Rome, Pompeii, Sorento, and Cinqua Terra.  Lazy, beautiful Cinque Terre was by far my favorite place but Florence was a close second for reasons apparent if you know me well - ART.  Florence, walking on the bricks and roads once tread by Michalengelo and da Vinci.  Florence with its tile, family feuds, cathedrals, and endless art galleries.  

With so many cities on our agenda we were on a tight budget.  Yet, we allowed ourselves a few indulgences, one being a two night stay in a Florentine monastery-turned quaint hotel.  High-beamed ceilings, gigantic solid wood doors with tricky locks to suit.  Engraved crosses in every corner and nook.  It was magical.

We woke each morning feeling small in our bed under the majestic high ceiling, the dark-stained wooden beams in stark contrast with the white painted ceiling.  We sauntered slowly toward our morning espresso then out onto the streets, a walk along brick pathed paths to the Duomo.  I picture it now.  Just before reaching the Duomo there was a cartoleria on our right, with fine swirling carte marmorizzate, and little packages tied up with twine in the storefront.  I entered this tiny store, eyes wide with the beauty.  Back out again, stepping down onto the sidewalk then around the corner to the Duomo its exterior littered with scaffolding and ladders, renovation on repeat through hundreds of years.

Everywhere you looked, right or left, tucked away and unnoticed or with the grandeur of a long entrance line, metal detector, and ticket there was art.  It's a surprising thing when you see masterpieces in real life.  They exceed or sometimes even disappoint what you've created in your mind's eye from textbooks and reprints.  Larger in scale, slightly different colors than you expected, so much smaller, textures not perceived in 2D are now fresh and dangerously tangible in front of your eyes.  Tony and I soaked it all in and by the end of the day we were completely exhausted, every sense overwhelmed.  My feet hurt, my knees ached from standing and walking all day.  My eyes literallly burned.  But yet, there was just one more, just one more thing we had to see that day.....

Our agenda was tight in each city, with Rome and Florence leaving little time for casually walking the streets, stopping in for an espresso, people watching.  Yet, it was the unplanned discoveries that remain the most memorabale and exciting.  The traveling Chagall exhibit that just happened to be open until 9 p.m. in an art museum across from Hadrian's column in Rome.  A large banner beckoning us inside.  "Just an hour maybe?  I'm not sure my legs can last much longer."  Two hours later and we practically crawled out of the museum, exhausted but blissfully happy.  So many colorful, joyful images.  Other unexpected discoveries:  The puppeteer shop in Florence, Pompeii and all its many secrets,  cheese and bread dinner looking out our tiny window (just a hole cut in the wall) in Cinque Terre, a restaurant in Sorrento absolutely dwarfed and overtaken by lemon trees.  

(Image from www.facebook.com - The Drop Box Film page)

But there is one discovery that now, with greater life experience I more fully appreciate and understand.  On the way back to our monostary hotel in Florence, just after the sun set we passed a dark, uninhabited, uncared for building that was quickly falling into a state of ruin.   We paused a moment in our walk to study the circular blue and white tondi: roundels picturing small babies, scattered along the frieze above the portico.  Tiled or porcelain tondi are found scattered all over Florence's architecture and usually symbolize the building's purpose, the architect, or the family that commissioned its building.  This particular building was an orphanage and the porcelain baby was a symbol to the common people that children were safe here.  As we walked the length of the orphanage's loggia we found a large, circular stone that was partially out in the couryard and partially inside the building.   After reading a bit more we learned that the stone was used in the 1400's as a way to safely and anonymously leave an unwanted infant.  The mother would place the baby on the stone, turn the stone like a Lazy Susan, so that the baby would then be in the interior courtyard of the orphanage.  The baby's cries would alert the nuns inside as to it's presence and they would quickly retrieve the infant, ushering it to safety.

Twenty seven and preganant with my first-born I could not fathom the circumstances that would cause a mother to abandon her baby.  Turning, turning, turning that rounded stone never to see your child again.  Before experiencing the highs and lows, the indescribable love and pain of motherhood, this discovery of the Florentine orphanage left a deep impression on my young heart.  

The Dropbox movie made an even greater impression.  God was at work in my heart, in Tony's heart to see this movie.  We knew the premise, South Korean pastor creates safe, heated box for mother's to leave their unwanted babies, babies that would have been abandoned to the elements had it not been for this pastor's invention.  An idea as old as Florence, Italy now in modern Seoul.  We knew the premise but we had no idea how deeply this movie would touch our hearts.

(Image from www.facebook.com - The Drop Box Film page)

I think there was a total of 10 minutes when I was not crying as Tony and I viewed this powerful film on an icy March night.  When tears were not rolling, we were laughing in delight over these precious children.  

This movie touched my soul in a powerful way.  For you see, the babies abandoned were mostly disabled.  The pastor and his wife who took them in - called powerfully and radically to care for "the least of these;" to literally be God's hands and feet to the children who would require the most care and love, many of whom would never be able to utter a word of thanks.  At the time of filming this Pastor Lee and his wife were caring for 15 children, many (if not all) with disabilities.  And you know what?  I saw more joy, more prayer, more love, more purpose in that family than any I might witness in a house full of "typical" children.  

There was one particular story-line in this film that pricked my heart, one vital piece of the story that left the deepest impression on me: a mother of a special needs daughter.  This piece is not immediately revealed at the beginning of the film but is rather shared later, bit by bit.  You watch baby after baby entering the tender care of this family.  You watch this pastor lovingly pray over each child.  Meal-times and bath times, and rolling around rough housing times.  And all the while you are thinking, "Who would take on such a heart-wrenching, demanding, exhausting call?  Who would take on this role?  Who would feel such a passion?"  And in these scenes you are not allowed to see (quite yet) the instrument of their calling.  The broken vessel by which God would save many lives.  Long before any Dropbox there was the birth of a man named Eun-man and he is Pastor Lee's eldest son, his son born with severe and profound disabilities.  When the movie introduces 26 year old Eun-man, it does so in the context of the care given him by his father, his mother, and several adult volunteers.  His needs are vast, and suddenly this movie with its joyful overtones turns quiet and somber.  You watch several scenes of the labor intensive, yet tender care of Eun-man, from bathing him to feeding him, to suctioning out his tracheostomy.  

(image from www.facebook.com The Dropbox Film page)

Then there is the scene where I literally hold my breath.  Pastor Lee is talking to his son quietly before asking him to give the camera a smile.  Based on all the previous scenes, all the care his son requires, all his challenges, you are left wondering will his son smile at the camera.  Does he understand what his father is asking him to do?  In the quiet pause as his dad says "Smile, give them a smile," your heart is breaking.  He's not going to smile.  He doesn't understand.  And you want him so bad to smile.  You want him so bad to prove to all of us he's in there, understanding his father who loves him so dearly.  His father who is coaxing and rooting for a smile from his son.  And just when you think there's no way he has the capability to respond, Eun-man smiles for the camera, slow and laborsome but a smile.  Right there in our theatre seats we laughed and cried in relief and joy!  You see, Eun-man is in there.  This man who on the surface seems so profoundly challenged, has this spirit, has this joy.  Lest you leave the movie feeling as though this was a one-time miracle, the final scenes include Eun-man giving smile after smile after smile, all in response to joyous things happening in his presence.  It just touched my momma's heart so deeply.  Parents of special needs children hold out hope for the simplest things and we find such joy, such relief, such comfort in one smile, one signal of understanding.  This film so beautifully portrays that kind of love.

But perhaps more profoundly, I came away with this reminder from Pastor Lee.  God sent our children to this Earth with a disablitiy and He did so for a purpose.  I was reminded of Joseph's story and his faithful declaration to his guilt-ridden brothers, "You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives." Genesis 50:20

Society would say these children are burdens.  Society would say, you parent of a child with a disability, you sibling of a child with a disability -  your life is over, your life now full of restrictions.  Here in America we may not abandon our children with disabilities at the rate other countries do, but we do abort them in shocking numbers, their lives considered not worth living.  Yet, here is a man (Eun-Man) with profound challenges, totally dependent on others for his care but God has used him in the saving of many lives.  Every baby entering that Dropbox finds safety and redemption because God has worked good out of a situation society sees as hopeless and pitiful.  Eun-man's smile, his soul the avenue through which God would save many.  Is there any greater purpose for one person's life?  

The Dropbox film shows the value of human life, every life.  The Dropbox film, Pastor Lee, his wife, and his small army of volunteers demonstrate to the world that every life has purpose, from the servants to those being served, from the helpless to the capable, from the broken to the whole -  healed by God's grace.  Each is valued, each is loved by a loving and gracious God.

"If my father and mother leave me,

    the Lord will take me in." Psalm 27:10

From a Florentine orphanage to a South Korean Dropbox I am learning God's redemptive story for those broken and abandoned.  God's redemptive story for broken me.

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.