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}