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}

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.

44/52 - Halloween

 

 

Vincent - A pirate.  You know, the good kind....

 

Sophia -  Minnie Mouse.  So feminine and sweet...

 

Luisa -  Our little princess was a little too tired to enjoy all the festivities....

 



4th of July

In an effort to stay on top of current events in our little abode, I will post pictures from our July 4th.  Tony had the full day off (there are so many perks to being a chief resident).  We spent lunch and early afternoon at the lake house of Tony's boss, Dr. Waite.  A few other residents joined in the fun and we spend the afternoon fishing, boating, and eating.  A wonderful time, with a very all-American feel, was had by all.  The Waites were gracious hosts.  Just getting out of town and retreating to the country brought great relaxation during the mid-week.

{2012}

 {2009 - Wow!  How they have changed in 3 years!}

{Fishing at Dr. Waite's dock} 

 {We caught one!}

 {Beautiful Lake Logan Martin}

 {Listening to the live crickets}

 {"Daddy!  A cricket jumped on my neck!"}

 {Lake swimming}

 {Dr. Waite let the kiddos take turns driving the boat.}

{Both kids wanted to go FAST!!!!}

Upon returning to Birmingham, I took a little nap.  The 100+ degree weather is making this pregnant momma exhausted by 2:00 every afternoon!  After naps we headed to Jean Jean's to celebrate with the Sampsons, dear family friends who will soon be moving to California.  How sad we are to see the Sampsons go! 

I first met Lenora at our neighborhood park.  Her eldest was sandwiched in age between Sophia and Vincent.  Her youngest, just a baby at the time.  From the start, Lenora was easy to talk to and we soon realized that we were not only Texas natives but San Antonio natives!  She and her husband had just moved to Birmingham from England to pursue his fellowship in Vascular Surgery.  Since meeting Lenora, they have added a 3rd baby to their family and our kiddos have grown into the best of friends. Tony rotated with Jay during general surgery internship and they hit it off from the beginning.  The funny thing about our friendship with the Sampsons is that we run into them everywhere.  We would schedule playdates each week but then, without fail, we would run into eachother again later in the week; creating an impromptu playdate.  My mom and Lenora also became fast friends so they have truly become "family friends."  They are headed to California on Wednesday, where Jay is stationed and will begin his career in Vascular Surgery. I am thankful for God's provision of friends in the most unexpected places and ways!

{Jean Jean bought us matching outfits.  We were so cute!}

{"Wanna race and run around like crazy?"}

{"Sure!  Sounds like a great idea!}

 {Pretty Arabella fell down.}

 {Let's blow up this balloon!}

 {So tired!}

  {Baby Madeline is getting so big.}

 {Time for some All-American hot dogs and hamburgers}

 {Then out on the front lawn to watch the fireworks above The Vulcan.}

{Sophia drew this picture the morning of the 5th.  It's her interpretation of our July 4th holiday.  She's the one in the middle facing the fireworks. Vincent is beside her on the blanket.}

Perpetual Easter

Easter 2012 did not disappoint.  Beautiful weather, flowers still abloom, great church service, delicious lunch, the delighted faces of my children.  As is tradition we started the morning with pictures on the front steps, followed by church. 

{4 years old with hair growing so long and beautiful.  Where has the time gone?}

{2 years old and about as sweet as they come.  This boy - he has my heart....}

{My heart might explode...}



{Everyone is looking and smiling at the camera!!!  A rare thing, indeed!}

{And this is how we get them to look at the camera - bribery}



After church we were invited to lunch at our neighbor's house. They provided a delicious Honeybaked Ham and yummy mint tea. Everyone else brought a side. We thoroughly enjoyed ourselves. Some people have the gift of opening up their home effortlessly and warmly - my neighbor Sara most definitely has this gift!

After lunch were the mandatory Sunday naps - EVERYONE in our house naps on Sunday afternoon (and by naps I mean dead to the world, warm, red imprints on cheeks, slobber on the pillow, naps) - the kiddos hunted eggs. The had such a great time that we decided to hide the eggs again in the front yard, and again in the bushes, and again for the parents to find them. Even today, the Monday after Easter, we are still hiding eggs!

{Easter baskets!}

{Getting ready to hunt!!}

{On your mark.  Get set.  GO!!!!}

{Another hunt?  Yes, I believe we shall....}

The funny thing about Easter is that I'm never disappointed come Monday morning.  I never have a sense of let-down that the holiday is over, rather I feel rejuvenated.  This year I read so many great blog posts about Holy Week (here and here).  I also read Philip Yancey's thoughts in his daily readings book, Grace Notes.  Tony and I studied and taught the Easter lesson in our Sunday School this year.  And as a result of all these readings and studies I felt completely bathed in the true meaning of Easter.  And today?  The day after Easter?  Today I give thanks that we live in a time of "perpetual Easter."  Our Savior still lives.  And although we have Good Friday days and maybe even years, we live with the promise of another Easter Sunday to come - a day when He will make all things right.
He has Risen!  He has Risen indeed!