hello there.  i got an interesting call today from our mitochondrial coordinator.  she said our neuro wants to start cody on 'vimpat' which is a brand new anti epileptic drug that has shown lots of promise in other children with seizures as intractable as cody's.  now granted, it's an adult medication meant for people 17 and older.  but that's nothing new.  so tomorrow we try it.  i told her that the current combination (lamictal, clobazam and zonegran) is doing nothing.  so on we go -- to what i believe --- is our 17th drug.  Deep breath. 

It has been a sad week.  last night cody had at least 15 seizures overnight.  he wanted to sleep so badly, but each time he fell into a deep sleep, he seized.  every so often he does this - sleep seems to trigger a seizure.  i just lay there with him all night - trying to comfort him with my words and hugs as he slept, seized, slept seized.  today was a wash - he slept on and off - sometimes seizing.  days like these just feel like such a waste of life.  i am glad that at least we have the hope of a new drug.  i pray it is different this time.  this drug is said to impact seizures differently than any other drug has before.    info is at www.vimpat.com if you are interested - there's a video that explains how it works on the brain. 

i am one tired mommy.  i think this is at least my 7th night with little or no sleep.  i am a zombie.  as i laid there last night holding cody i wondered as i often do.......how much sleep deprivation can a body truly take?  it seems i am pushing the limits.  it is the most helpless feeling on earth to just lay next to your child as he seizes all night.  i can't even put into words how it feels.  then to just have to get up in the morning and somehow put on a smile for casey...somehow drop cody off at therapy and smile and chat.  then somehow finish my Christmas shopping as if buying or getting 'gifts' are not the most meaningless thing on earth to me right now.  it is the strangest existence to live through a night last night and still have to get up and go about your day as if you're not secretly dying inside.  yet you must.  there's still laundry, groceries, therapies....there's still a 2 year old who needs to feel like today is a great day.  there's a husband who still needs dinner.  there's phone calls to make, bills to be paid. 

and the chorus of 'Have yourself a merry little Christmas....make the yuletide gay......from now on your troubles will be miles away' lingers on the stereo.  Oh the frustrations of the Hallmark Christmas.  I fight not to hate this time of year.  Does it really matter if my next door neighbor gets a gift?  Does my mom really need more perfume?  Do I really need to shop in a mall for family members?  My son is barely making it through the night!  Does all this really matter?  All the stress, the running around, the presents, the pressure?  I try to pare it down as much as I can but there are birthdays, graduations, and some people who don't quite understand why they have no gift under the tree from me. 

We went to Snowflake lane this past week.  It's kind of a parade down the street in downtown Bellevue with live drummers, music, snow falling from the skyscrapers.  It really is a neat event.  Casey loved it.  But Cody just sat comatose in his medical stroller - not even looking up.  more than a few people asked me to please 'watch where you're going' as i tried to maneuver cody's gigantic stroller through the tight crowd.  One woman barked, 'i see you have issues............but you are pushing me right into this pole!'  i don't know how to push the equivalent to a wheelchair through a sardine-packed crowd without having to kind of muscle my way through.  and oh-my the looks of disdain...the sideways glances at cody.  And i'm not even talking about the grief part or the sad part of seeing all the other healthy kids.  I'm talking sheer logistics. 

So it all makes me ponder - with a non-typical family like ours - how DO we enjoy this Christmas season?  What do i impart to Casey?  Do i boycott all gift giving because i just don't have the time or energy?  heck, if i have a free hour, i'd rather try to sleep!  Do i slap a smile on my face and 'act' my way through it?

I don't have a clear cut answer.  But i do know this - the first word in Christmas is CHRIST.  i have to remember that.  And the king of all creation chose to pour himself into the body of a tiny, helpless, vulnerable baby.  he entered our crazy world to lead the way.  his birth (which is what this holiday is supposed to be all about) changed everything.  But has it changed me?  Am i really celebrating His birth??  My presents are bought - and the ones i haven't gotten to (I decided today) are not going to happen.  I'm tired.  my child is so very sick.  And i am going to ask the Lord the next week to reveal Himself to me in a new, fresh way.  And i'm going to fight to focus on Him - not on me.  He is able to meet my deepest need - but only if I seek Him out. 

years ago, i did a talk to a group of women about Mary.  As i re-read it tonight, i realized it helped me re-focus.  here is a portion if you're up for the read:

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Let's look closely at Mary – an ordinary girl – who had extra-ordinary faith.  In Luke 1 we read, 'The angel said to her, “Do not be afraid, Mary, you have found favor with God.  You will be with child and give birth to a son, and you are to give him the name Jesus.  He will be great and will be called the Son of the Most High.  The Lord God will give him the throne of his father David, and he will reign over the house of Jacob forever; his kingdom will never end.”  How will this be, Mary asked the angel, since I am a virgin?  The angel answered, “The Holy Spirit will come upon you and the power of the Most High will overshadow you.  So the holy one to be born will be called the Son of God.  Even Elizabeth your relative is going to have a child in her old age, and she who was said to be barren is in her sixth month.  For nothing is impossible with God.”  “I AM THE LORD’S SERVANT, MARY ANSWERED.  MAY IT BE TO ME AS YOU HAVE SAID.” 

Her response?  “Let it be.”  

Now to really appreciate the sacrifice of that statement, let’s look at what this teenager was facing: 

1)      She was engaged to Joseph --  and what would he think when she told him she was pregnant…and the baby was God!  To make matters worse, in those days, most marriages were arranged from childhood.  As a couple grew older and approached the age for marriage, they moved into a period of time called the “espousal” – a year long term of engagement which could only be broken by divorce.  We read in Matthew 19 that “Because Joseph her husband was a righteous man and didn’t want to expose her to public disgrace, he had in mind to divorce her quietly” ((after he found out she was pregnant.))  So she was looking at losing her life long fiancée – and potentially raising this baby all alone.

2)     In those days, the punishments for immorality were severe.  Deuteronomy 22:23 was the law of the land:   'if a man happens to meet in a town a virgin pledged to be married and he sleeps with her, you shall take both of them to the gate of that town and stone them to death.” 

 So when Mary’s pregnancy was found out…she could be stoned to death.  That’s part of why Joseph wanted to take her away and divorce her quietly…to protect her.   (However, joseph, himself, later received word from the Lord that he was to go ahead with the marriage and that the child was, indeed, divinely conceived.)

 3)     Mary would sacrifice all her comforts…Jesus was to be born in Bethlehem.  Mary lived in Nazareth.  Can YOU imagine traveling to a foreign city in your 9^th month of pregnancy on a donkey?  Only to arrive and lay down to give birth in a stinky stall with no family…homeless? 

 4)     Her reputation would be sacrificed.  not to mention that Jesus was 30 before he displayed miracles to substantiate his ministry.  So Mary’s claim that she WAS a virgin and the father WAS God…was probably laughed at for many years.  In fact, the Pharisees accused Jesus of being born of fornication.  So for most of her life, Mary lived under a cloud of suspicion. 

 5)     Her future would be filled with pain.  She would watch her perfect son, whom she loved more than her own life, as He was mocked, despised, and rejected…then ultimately crucified on a cross.  yet still she chose to say “Be it unto me according to Thy Word.” 

 So much for her plans & dreams.  Her agenda.  And how closely we cling to our schedules, don’t we?  I mean, I have every night booked from now until Christmas.  We women are planners!  And look out if you get in my way or upset my schedule.  Mary didn’t need a calendar anymore.  Every square was open for God.  She had no schedule.  Her entire life, as she knew it, was gone.  Forever. 

 That blows me away.  She didn’t waver in her faith.  And she only had one question about this divine conception:  She inquired, “How will this be since I am a virgin?”  That might sound like she’s feeling some doubt.  Yet most Bible scholars agree that hers was not a question of doubt…only of method.”  She could have easily asked “why?” or “why me?” or “why now?”  “why here?”  Instead, she simply asked “how.”  In other words…she was saying “okay…I agree to this, but how are you going to do it?”

 And the angel answered her question:  The Holy Spirit shall come upon you.  And then Gabriel added “For nothing shall be impossible with God.”

 Mary believed Gabriel.  And accepted the fact the Christ would live inside her womb.  One of the great verses in the Bible reads, “I am now crucified with Christ, it is not longer I who live, but Christ who lives in me.”  Well, get this!  Scripture says “it is not longer I who live, but Christ who lives in me…”  for Mary, that was true literally.  Christ did live IN her…in her body.  What an incredible miracle…all because she said yes to God.

 And what was it like – being the mother of Jesus?  From the book, “Mary did you know” we read,

 “She gave birth to the one who created HER.  Every mother counts the fingers and toes of her newborn child…to make sure they’re all there.  But I wonder if Mary realized those tiny hands that were curled around her fingers were the same hands that had formed mankind?  Those little feet were the same feet that had walked on streets of gold and were worshipped by angels.  That tiny infant voice had once spoken worlds into existence. On that first morning when she kissed her newborn child, she wasn’t just kissing a baby, she was kissing the face of God.”

And it didn’t end there.  Jesus – throughout his entire life – never traveled more than 30 miles from His birthplace.  Surely she was there for the baptism, the feeding of the thousands, and every other major event of His life.  And she was there when they crucified Him.  She was the first one to hold Him when He entered the world, and she was the last one to hold Him at the end of His life. 

So you see, Mary said yes to that angel – and yes to a life she had no control over.  She had to die to wanting control.  It took total surrender, total submission.  And look how she was used.  Profoundly.  The best description I’ve heard is from a song many of you probably have heard.  it’s called “Mary did you know.”  Here are the lyrics: 

 “Mary did you know, that your baby boy

will one day walk on water?

Mary did you know, that your baby boy

will save our sons and daughters?

Did you know that your baby boy

has come to make you new?

This child that you’ve delivered, will soon deliver you.

Mary did you know, that your baby boy

will give sight to the blind man,

Mary did you know? That your baby boy

will calm the storm with his hand?

Did you know, that your baby boy

has walked where angels trod?

and when you kiss your little baby,

you’ve kissed face of God.

Mary did you know, that your baby boy

is the Lord of all creation?

Mary did you know, that your baby boy

will one day rule the nations?

Did you know…that your baby boy

is heaven’s perfect Lamb?

This sleeping child you’re holding…

is the GREAT I AM.” 

Well, she didn’t know.  Not fully.  And what if she hadn’t said yes?  Imagine what she’d have missed out on.  Jesus Christ.  And that’s what happens when we don’t say yes.  We miss out on Jesus Christ.  Mary’s dream was to be a wife.  God’s plan for her was to give birth to the great I AM. 

 At Christmas time…I am personally trying to learn from Mary’s model of faith.  As we celebrate Christ’s birth, we remember that it is always through death to ourselves that we receive new life in Him.  Mary died to herself and as a result, the Lord birthed HIS plan for her life…as SHE gave birth to Jesus Christ.  But her death to herself had to come first…before Jesus could be born. 

But how do we die to self?  How do we strive to be like Mary?  This book “Let Go” by a man called Fenelon – says “I am aware that it is the life of self which causes us pain.  That which is dead…does not suffer. If we were really dead, and our life hid with Christ in God, we would no longer struggle with those pains in spirit that now afflict us.”

Isn’t that SO true!  We are called to die to our flesh.  And when it rises up, when we fear, feel anger, when we’re selfish…it is proof that that specific area is alive and well.  Because that which is already dead, does not suffer. 

The book goes on, “The great Physician who sees in us what we cannot see, knows exactly where to place the knife.  He cuts away that which we are most reluctant to give up.  And oh, how it hurts!  But we must remember that pain is only felt where there if life, and where there is life is just the place where death is needed.”

Constantly…we must die to our flesh.  By putting God on the throne of our lives.  By giving Him control.  This book puts it eloquently:  “You must be willing to yield to the will of God whenever He decides to remove from you all of the props on which you have leaned.  So give yourself up to His plans.” 

Paul puts it eloquently as well:  “but whatever was to my profit, I now consider loss for the sake of Christ.  What is more, I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord, for whose sake I have lost all things.”

And what is the reward for us – for dying to our flesh?  It’s the same reward for us as it was for Mary.  Jesus Christ.  Nothing more.  Nothing less.  He is our reward.

Not long after the visitation from Gabriel, Mary shows the abundance and peace she felt because of her obedience.  The same abundance and peace we are promised when we are obedient.  She sang, in Luke 1:46:

“my soul glorifies the Lord and my spirit rejoices in God my Savior for He has been mindful of the humble state of His servant. From now on all generations will call me blessed, for the Mighty One has done great things for me – holy is His name.”

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i wrote the above before Cody was ever born.  at the time, i had no idea what lay ahead.  And it has fresh meaning to me because if Mary said yes to all that - even watching the horrifying suffering and persecution her son would face - even watching her own son die an excruciating death - then perhaps i can say 'yes' in a new way to what God has called me to do.  in other words, if Mary can do it, so can I!   Yes, watching Cody suffer is endlessly painful.  But Mary leads by example - and she simply trusted that her life was not her own.  She trusted EVEN AS she watched her son suffer so.  Can i do the same?  Can i say 'Let it be' - and let Jesus be enough for me?  I will try this Christmas season.  And i'll letcha know.  :)

with love,

Shawna