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.

Spring's Common Grace

There is not a better example of “common grace” than Spring-time. Common grace, also known as “general grace” is defined as “non saving grace in which blessings are given to humanity for physical sustenance, pleasure, learning, beauty, etc. as expressions of God’s goodness. It is particularly contrasted…. with God’s special or saving grace.” (McKim, Donald K., The Westminster Dictionary of Theological Terms, Second Edition). Common graces are the gifts given all mankind regardless of their belief system, faith, or acknowledgment of God the creator. How gracious and good is our God to lavish mankind with the beauties of nature, the breath of babies, the animals all around, intellect for scientific discovery even if we never choose to acknowledge Him as the giver?

Every good gift, every perfect gift, comes from above. These gifts come down from the Father, the creator of the heavenly lights, in whose character there is no change at all. James 1:17

Spring-time walks made beautiful by eyes specifically created to see color, not black and white. Spring-time with the Forsythia shooting out from it’s bush, out from the winter neutrals, shocking our color starved eyes with life and beauty. The rest of nature snoozes in hibernation as Red Bud Trees awaken and sing of the new morning. Daffodils dwarfed under trees trumpet with their blooms God’s love song. Paper Whites shyly whisper beside….. Spring is coming. And in every petal, in every bud about to blossom is God’s message, “Broken humanity, I love you. I love you…..” The azalea flowers will soon clump together, every hue in the rainbow proclaiming, “I bloom for He is good….” The hydrangea bush in the shade will not collapse under their rotund blooms. They will hold their weight and will say, “God is gentle and kind. Masterful and sovereign over all creation.”

For ever since the world was created, people have seen the earth and sky. Through everything God made, they can clearly see his invisible qualities—his eternal power and divine nature. So they have no excuse for not knowing God. Romans 1:20

Birds will hatch, goat kids will be born their ears floppy and soft. God will feed them from His very hand…

Do you hunt the prey for the lioness and satisfy the hunger of the lions when they crouch in their dens or lie in wait in a thicket? Who provides food for the raven when its young cry out to God and wander about for lack of food? Job 38:39-41

All this glory and yet nature is not where God sets His sight, pours His love. Mankind is the object of His love…

When I consider your heavens, the work of your fingers, the moon and the stars, which you have set in place, what is man that you are mindful of him, the son of man that you care for him? You made him a little lower than the heavenly beings and crowned him with glory and honor. Psalm 8:3-5

Keep me as the apple of your eye; hide me in the shadow of your wings. Psalm 17:8

All mankind was given God’s very breath. All mankind was created in His image. But for those who choose Jesus. For those who surrender to His Lordship… we are the recipients of not only God’s common grace but also His saving grace….

Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me. (John 14:6)

If you declare with your mouth, “Jesus is Lord,” and believe in your heart that God raised him from the dead, you will be saved. Romans 10:9

After salvation His grace continues as He pours His Holy Spirit into us, allowing us to be beauty and light to the broken world around us.

“You are the dwelling place. You are the place where He displays His glory. You are the place where His glory is ‘at home.’” (Altar'd, Jennifer Kennedy Dean).

As followers of Jesus Christ are we shining brighter, acting more lovely, blessing more profoundly the world around us than the flowers blooming outside our doors?

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}

Easter Monday

It is Easter Monday, tomorrow will be Easter Tuesday and then Easter Wednesday and then.... well, you get the point.  For those who believe in and follow Jesus Christ everyday is Easter Sunday.  God's power that resurrected Jesus on Sunday is still at work on Easter Monday.

Easter Monday when the laundry piles too high.  Easter Monday when the seven year old wakes up uncontrollably grouchy and you lose your temper, returning her bad attitude in kind.  Easter Monday when the officer assigned to your burglary case calls wanting details that equal more work, more phone calls for you.  Monday when you fought with your best friend of a husband the night before, over the same thing you've fought over for close to 15 years and you think, "Again?  I thought we were over this!"  And your heart hurts with the pattern on repeat.  Monday morning and a week full of appointments.  Monday morning and meals to cook and counters to wipe and unbelievably sticky floors to mop, and hours of picking up and you think, "Is this what my day is about? It never seems to end."  When sticky floors make you angrier than they should.

Control yourselves and be careful! The devil, your enemy, goes around like a roaring lion looking for someone to eat. (1 Peter 5:8)

He himself bore our sins in his body on the tree, so that we might die to sins and live for righteousness; by his wounds you have been healed.  For you were like sheep going astray, but now you have returned to the Shepherd and Overseer of your souls.  (1 Peter 2:24-25)

At some point on Easter Monday the reality sets in.  Difficulties, frustrations, and trials were not crucified on Friday, a carefree life reserrected in it's place on Sunday.  On this the day after Easter the world looks like, well.... the world.  Tedious work, tempers, illness, old temptations, garages with their locks picked, wallets and their contents flung out the car window of those whose hearts are bent on destroying.  Even death on this Monday after Easter.  You are tempted to believe the power and hope found yesterday, proclaimed on Sunday, is rendered ineffective and lifeless again today.  

I pray also that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints, and his incomparably great power for us who believe.  That power is like the working of his mighty strength, which he exerted in Christ when he raised him from the dead and seated him at his right hand in the heavenly realms. (Ephesians 1:18-20)

On this Resurrection Monday Jesus is seated in heaven, all accomplished.  The fact that yesterday He conquered death means that today He can conquer my bad attitude.  He can destroy those patterns of thinking and behaving and sinning that break relationship with those I love.  The seemingly insurmountable obstacles on this Monday after Easter?  Are they really greater than death itself?  

The God who raised His Son three days in death's chamber can be trusted to give joy and purpose in the most tedious of tasks.  Chores that when done unto Him, with a thankful heart turn beautiful in their rhythm.  This God of Easter restores brokenness, redeems those things the world would like to destroy, and equips us to face life's challenges each day.  This God of Easter is not just for Easter Sunday...

His resurrection power gives new eyes to see the blessings alongside the trials.  Outside the garage where burglars crept just feet from my children's beds, there are azaleas and dogwoods and a new bright green that almost burns my eyes after a long winter.  The blued eyed baby girl that is starting to rake her food rather than pinch it with two fingers?  Well today she laid her head on my breast as I sang and rocked.  I tilted her head back and kissed her mouth, smelling her familiar breath.  The smells and love of this girl are rooted deep down in my heart.  Who gives us such great love for our children, our fellow man?  Where does such a gift come from?

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.  (James 1:17)

Alongside Rett Syndrome, and Down Syndrome, and Autism, and hundreds of other more tragic medical diagnoses is the whisper of a Savior who crushed Satan's head on the cross (Genesis 3:15).  While for a time the world moves forward in it's sinful, broken state His resurrection power is still working, transforming, creating alongside the stench of a dying world.  He is working miracles and often these miracles are in the transformed hearts of those who follow Him.  I am not the same Sarah I was last Easter.  He is progressively changing my heart of worry to a heart of trust.  

On this Monday after Easter I will, "fix my eyes on Jesus , the author and perfector of my faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God.  I will consider him who endured such opposition from sinful men, so that I will not grow weary and lose heart."  Hebrews 12:2-3 (italics changed for personal application)

Every day is Easter for those who believe in and follow Jesus Christ.  We are not yet allowed to see His physical resurrected body but in between Easter Sunday and the unknown future when He comes again - we are given His power, His joy, and His hope.  We are called to transform and infuse this broken world with His goodness and grace.  I will pray to do just that on this Easter Monday, even as I mop the dirty floor and fold the endless laundry. I will not lose heart....

Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the goal of your faith, the salvation of your souls. (1 Peter 1:8-9)

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.

The Sea of Motherhood....

I live in a land of snot dried tissues, medicine droppers, and tea wrappers.  I'm surrounded by an ocean of pink antibiotics, sticky and sweet.  I am bobbing at the surface searching for a life preserver, drowning in the late-night wakings, the worry.

This is motherhood.  These are the waters, choppy and perilous.

If one more kiddo throws up, develops an ear infection, or dares to dribble even a bit of snot I may reverse my way out the drive. 

Lu has decided to wean.  Too bad she won't take a bottle.  Or accept formula.  Or drink from a sippy cup.  She would rather have fruit, thank you very much.  Cut in small pieces with a side of Saltines.  At night after everyone is asleep I grab my phone off the nightstand and google "Low milk supply?  How many wets for an 8 month old?  Signs of dehydration."  You know, just some light, relaxing reading before drifting off to sleep.

Vincent is the "The Ill Lone Ranger."  I found him two nights ago wandering the house moaning.  Before I could ask what in the world he was doing and was he o.k, he laid down prostrate on the living room carpet and vomited.  Later that same night I found him in the same position on the bathroom floor.  Literally face down, lips on nasty bathroom floor.  "Must disinfect all areas of house tomorrow," I thought.  Then he vomited again and in stupefied exhaustion I picked him up and carried him back to bed.  "Must wash bathroom carpet tomorrow," I thought.

Then there's Ana Sophia with her immune system of steel bored out of her mind as the nasty cold passes through every member of the family.  She sniffled for a day, coughed for a few then asked if she could wear her track suit to run the neighborhood with the dog.  The long sleeved, sweatpants track suit.  Did the fever go to her brain?

This is motherhood.  These are the waters, choppy and perilous.  You hang on for one more day, hoping tomorrow his stomach will be strong enough to start the antibiotic.  The baby might nurse peacefully as she once did.  The ache in your own head might lessen, just a little.

"For the eyes of the Lord range throughout the earth to strengthen those whose hearts are fully committed to him." 2 Chronicles 16:9

 

 

His eyes are ranging, searching to and fro.  Then He sees us.  Our heads bobbing on the surface of the troubles and fears threatening to drown us.  He will strengthen us, pull us out in the form of modern medicine, loving neighbors, friends who respond to emergency texts.  In light of this grace, we find ourselves drowning in a different ocean, an ocean of gratitude.  Thanksgiving for bodies that work properly to fight infection.  Medicine that relieves pain and kills nasty bacteria bugs.  Developmental milestones reached.  Laughter (FINALLY!) from raspberries on the belly.  When we count our blessings, we gasp fresh air.

 

This is motherhood.  These are the waters, peaceful and calm.





A Mother's Day 5 Minute Friday

I bounce Luisa, cradling her tight against my heart.  Double ear infections all week and she refuses to nurse.  She wails and bucks and is frantic with pain and hunger.  So I dance the floor back and forth, my whole body up and down, working, bouncing to bring her peace.  She stills for only a time before arching her back with a scream.  I move her to my shoulder where she quiets momentarily.  I long to comfort her but her ears are too sore.

When minutes turn to hours in the dark of the house, when everyone is dreaming and the walls swell with the collective slumber breath of the rest of the family, I wander, "Will I sleep tonight?"  But eventually Luisa calms, receives comfort, and lays down gently next to her Honey Bunny.  I tiptoe back to bed, slide between the cool sheets, and allow every muscle to relax.  As I fall asleep I pray that tomorrow she will nurse, make more wet diapers, be relieved of pain, find comfort in my arms.

In the middle of the night, when you pace the floor with a feverish baby, it feels lonely.  You envy the deep sleep all around you.  It is silent but for the whimpers and cries that cause great concern.  Those midnight sickness hours are a private affair between you and baby.  These are the hours that make you mother.  You stay awake while everyone else sleeps.  You comfort, worry, soothe, administer liquid relief, sing, pace, bounce.  This is motherhood.  It can be a lonely gig. 

"He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young."  Isaiah 40:11

 

In this season of ear infections and tantrums and school decisions and all that is small children, I like to believe I am not alone.  In the middle of the night I envision Him cradling me as I cradle her.  I picture resting my head on His heart, receiving comfort there.  My Father God can be Mother too.  For it is in Him I find comfort and relief. 

 

********

Saving my 5 Minute {and then some} entry for Mother's Day.  Find the prompts and link up here each Friday:

 





Waiting and Worry

{Waiting for Luisa}

 

Pride cometh before a fall.  But I will risk it, strap on my crash helmet and boast that I am getting better at waiting.

Actually it's not me at all.  Only the work of the Holy Spirit could change an impatient girl like me into one that has survived, maybe even thrived during these last six months of waiting.

Like eggs and bacon, waiting and worry are a go to combination in my life.  It's like the song I sing to the kiddos:  "Be patient.  Be patient.  Don't be in such a hurry.  When you get impatient you always start to WORRY."  When it comes to waiting, I seem to worry.  So God saw it fit to put me through several tests of waiting in the last six months....

Never, never, never believe subsequent babies will arrive earlier than your first.  Maybe they do for some but this certainly wasn't the case with Luisa.  Convincing myself that she would be early resulted in not so patient waiting.  But she arrived right on time, His time.

Then there was the whole "waiting for the house to sell" gig.  We put it on the market the last week of August.  Then waited for over 7 weeks for a buyer to emerge from several showings.  I cleaned. I picked up knick knacks.  My pregnant belly and I disappeared with two kids for hours during showings.  Nothing.  God had the perfect renters in mind. 

Speaking of housing.  How about waiting until the hour before you are supposed to be at the airport to find a new home?  We flew to Florida at the end of November with 6 week old baby Luisa.  Our mission?  To find a house in exactly 24 hours.  The first 12 hours were spent touring apartments.  Each one left an unsettled feeling in our hearts.  By the end of the day we were somewhere beyond exhausted, me in a puddle of tears on our hotel bed.  Wait, wait, wait.  Tony encouraged, "Let's look a few more places tomorrow afternoon before we fly out."  The next morning we were scheduled to attend a brunch with a few people from Tony's fellowship program.  We arrived with circles as deep as the Grand Canyon, baby Luisa in tow.  A sweet surprise was in store for us.  The chairman's wife took her place beside us at the table.  Upon hearing our lack of success in finding housing, she called a friend whose house was on the market.  The friend was willing to rent to the right family.  We met the homeowners an hour before we were scheduled to arrive at the airport.  A shake of the hand and God provided a house.  In a family friendly neighborhood.  With parks on every corner.  Within walking distance of the river and a school that just happened to have mid-year openings for Sophia and Vincent.  With artsy breakfast spots and delicious ice cream stores.  With wonderful neighbors with kiddos to play with.  With a fantastic backyard and two large oak trees.  My tear-stained waiting wasn't pretty that weekend but God was ever faithful.

{Playing at one of many great parks near our new house.}

{Yummy ice cream store nearby}

 

{GREAT neighbors.}

 

{So glad to walk next door and play with our friends...}



{First day at their new school.  Don't worry.  Sophia got happy and both she and Vincent LOVE their new school.}

 



May I share with you a few things I've learned while waiting? I share them with a humble heart; with honesty that, truly, patience is not a virtue of mine. Yet these are disciplines that helped me in the waiting. Maybe they will help you too?

Stay busy - I found this especially key while waiting for Luisa to arrive.  The days I stayed on the couch were the days I struggled most emotionally.  Ever amazed by the 9+ month pregnant lady re-arranging the furniture and planting flowers in the backyard?  She is trying to stay sane.  Go on excursions.  Make lists and work at checking them off in small chunks.  Like a really good soup, the key is "small chunks."

{We stayed busy with home improvement projects as we waited for Luisa's arrival.}

 



{Waiting for a great deal on a van paid off.}

Pray for the Small Things - When waiting, the small details cause the greatest angst.  Pray about the seemingly insignificant things and in doing so let them go.  God knows every, infinitesimal worry in your brain.  Why not give them to Him in prayer?  As I prayed I claimed Him as my Abba Father, ready to provide.

Call on Others - Ask them to pray for you.  Accept help.  Accept meals.  Ask your best friend, your family, your husband to help you with small tasks around the house.  My dear friend helped me pack boxes.  My mother did innumerable loads of laundry.  I let go of some control in my home.  As a result, I felt less stressed.

Are you Really in Control? - There were few things I was actually in control over during this move.  House selling.  Baby's arrival.  Place to live.  School openings.  Renters.  When I found myself getting worked up I asked myself this question:  "Is there anything I can do about this?"  If yes, then I did it - cleaned, researched schools, packed a box.  If the answer was no (i.e. no offer on the house, no signs of impending labor) then I would lay my obsessive thinking and fretting aside and pray.  Just quick little prayers.

Be Quiet - This might not be true for everyone else, but for me, talking about things sometimes makes it worse.  Especially if my talk is fretful talk about those details over which I have no control (see above).  It's natural to take our problems to physical, walking around with legs and arms people rather than to a God we cannot see.  Yet, when I disciplined myself to be quiet or to pray, I was less worked up (see scripture #1 below).

Memorize Scripture - I laugh as I type this.  I'm just plain lazy about scripture memorization.  Recently a friend gifted me with these scripture memorization cards.  Because they are so pretty, I have them displayed in a prominent place in my home.  Naturally and with little effort, I have memorized several verses.  I now "get" scripture memorization. If God's Word is hidden in your heart, He will be faithful to bring the perfect one to mind when you need it most.  Here are 3 of my favorite "waiting" scriptures:

".....Quietness and trust is your strength....." Isaiah 30:15

 

"...we take captive every thought to make it obedient to Christ..." 2 Corinthians 10:5

 

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7

 

 God is not interested in my happiness but rather my holiness.  He took me to an uncomfortable place last August when we decided to move to Florida all together with a 10 week old baby.  In taking me there He has worked on my impatience, my desire to be in control.  I have a long way to go but blessedly, He is not through with me yet (Philippians 1:6). 

Welcome to Florida - Let's Visit the ER

We moved four weeks ago.  So much has happened in such a short time....

We arrived in Florida on New Year's Eve with all the jitters and excitement that comes with moving into a new home.  Our rental home has a cheery, yellow living room and a bright green play room.  I set to work at unpacking boxes, eager to set up home.  It wasn't long before everything came to a halt.

{Moving in!}

 

Before leaving Alabama, the kiddos came down with a nasty cold.  Vincent was the worst, with a fever and ear infection.  Sophia developed a small cough but overall fared well, as she usually does.  A few days before the movers were scheduled to arrive, Luisa experienced a severe coughing fit.  Short, little coughs that grew in intensity until she appeared to be choking.  She turned bright red, eyes clearly in distress.  To be blunt, it freaked me out.  I immediately scheduled a doctor's appointment for both Vincent and Luisa.  Our pediatrician attributed Luisa's cough to post-nasal drip and said both kiddos appeared to be suffering from a virus.  The movers came and went, Vincent started to feel better, and Luisa experienced no more coughing fits.  Until we arrived in Florida. 

Only a few days after moving, Luisa's coughing fits increased in frequency and intensity, with bouts occurring 6-7 times a day. With each coughing fit I would hold her, trying to remain calm but inwardly panicking because she appeared to be choking and I was afraid she would stop breathing.  We did not immediately take her to the doctor since she wasn't running a fever and was continuing to eat well and smile.  A few days went by and the cough continued until one night I knew something was wrong.  An urgency laid on my heart to take her to the doctor as soon as possible.  I stayed up with Luisa all night praying she did not have what I suspected - whooping cough.  I even filmed one of her episodes to show the doctor the next morning. 

So only 5 days after arriving in Florida we found ourselves in the ER.  Upon hearing Luisa's symptoms, the local pediatrician (recommended by our landlords) asked us to go to the ER for further testing.  After showing the ER doctor Luisa's coughing video she ordered tests for RSV and pertussis (whooping cough) and a chest X-Ray.  Now I will be transparent with you.  There was a time in my life that I struggled greatly with anxiety.  God has worked in my heart since then and I've learned to trust Him, claiming His promises to be true.  As a result my anxiety has decreased over the years.  Yet when the ER doctor watched the video and responded with, "This looks like pertussis," I immediately began to worry, fearing the worst possible outcome.  The results for RSV came back positive.  Before we left the ER she was given an antibiotic to treat pertussis on the slim chance that she had both pertussis and RSV.  We were to return to the ER in 2 days for a follow-up and for the pertussis test results.  The next 48 hours were difficult.  I felt completely helpless as Luisa's body was overcome by coughing fits that would sometimes last as long as five minutes.  Yet I was also grateful that this illness was an anomaly, that otherwise she is a very healthy baby. 

On Saturday we returned to the ER to hear the wonderful news that Luisa was negative for pertussis. The doctor then listened to her lungs.  A "crackly" sound to her lungs caused the doctor to order a repeat chest x-ray.  Only one parent was allowed with Luisa.  I asked Tony to go so that he could review the X-Ray film.  While they were gone I sat in the small ER room thanking God for the negative pertussis results.  I felt great relief.  Imagine my surprise when the ER doctor came through the door and with great seriousness stated, "I'm sorry guys but the X-Ray does not look good.  She has severe bacterial pneumonia.We are going to have to admit her to the hospital."  I felt sick to my stomach as she then proceeded to go through every worst case scenario of this diagnosis.  At one point I actually stopped her and said, "You are scaring me."  This didn't faze her a bit.  Looking to Tony's face for reassurance, I noted his growing frustration.   After the doctor left the room Tony turned to me and said, "I really don't think it's as bad as she says it is.  Let's go upstairs and we will get a second opinion." 

Sure enough, two doctors confirmed Tony's suspicion, Luisa did have pneumonia but it wasn't severe and it wasn't uncommon for RSV to develop into pneumonia in small infants.  She would need to be monitored for 24 hours to establish that during the coughing fits her oxygen levels stayed within the normal range.  A doctor was in the room when she had one of her coughing spells.  He agreed that it looked a lot like pertussis.  He wanted her to complete the antibiotics for pertussis even though the results were negative.  She was started on another antibiotic for the pneumonia.  She was also given a shot of a different antibiotic but only after they blew two veins trying to put in an IV.  Luisa was bruised and exhausted.  I was worn-out and fearful.  Her oxygen levels stayed high all night, even during her coughing episodes.  We were released the next morning with antibiotics to treat the pneumonia.  Within two days the coughing fits were completely gone.

{Jean Jean helped the kiddos plan a "welcome home" party for Luisa.  Note the homemade streamers, balloons, and cupcakes.  Both kiddos were worried for their baby sister.}

When people hear about Luisa's illness they immediately say, "Wow!  Right in the middle of moving?!?!  Did you even have a doctor?"  No and we only knew two acquaintances to call for advice.  Yet, we never felt alone.  God works through people and God's people surrounded us with prayer and support.  Our Sunday School back home in Alabama prayed for us, sent us text messages, called us and surrounded us with their love even though we were hundreds of miles away.  My childhood church prayed.  Family prayed.  And we truly never felt alone.  Through it all Jean Jean was with us.  Making meals.  Watching Sophia and Vincent.  Holding things together.  A BSF member of my class here in Florida even brought a meal over.

 In the scheme of things, Luisa's illness was a self-contained, common virus that most children experience without complication.  I am grateful that Luisa is a healthy baby, that she does not struggle to breath on a daily basis.  These words come to mind:  "Count your blessings.  Name them one by one.  Count your blessings, see what God has done!"  We are blessed in so many ways.  Yet even knowing this, my old enemy, "fear," was lurking around, taunting me, worrying me during this ordeal.  And when I say "fear" I am not referring to healthy fear that spurs one on to action but rather paralyzing, worst-case scenario fear.  I called my BSF teaching leader in Alabama and asked her to pray for Luisa and also for my fear.  In her prayer she claimed the truth of perfect love driving out fear (1 John 4:18).  On the heels of her prayer and Luisa's illness we studied this scripture in BSF: "Do not be afraid, Abram.  I am your shield, your very great reward. (Genesis 15:1),"  The meaning of "shield" in this context includes God's sovereignty.  So God is our shield and in His sovereignty he allows certain things to happen in our lives.  He also prevents things from happening.  But no matter what happens in a day we know that it passed through God, our shield.  And since God loves me perfectly then I can trust that even if my worst fears came true, it passed through the loving hands of my Father first.  He will redeem it and work it for His good (Romans 8:28).  When I trust Him, His perfect love drives out my fear.

It was amazing to see how quickly Luisa recovered from her illness, thanks to all the prayers and the work of antibiotics (modern medicine is God's grace, for sure).  She turned 3 months old last week.  She smiles and giggles, delighting us all.  Thank you to everyone who prayed for Luisa.  I want to pay it forward and pray for you too.  And bring you meals.  And send you encouraging words.  When you are loved in word and deed you desire to do the same....