Friday, December 30, 2011

Plans . . . A Dan Post

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”   Jeremiah 29:11

I guess this entry is me taking a stab at writing our family Christmas letter wrapping up 2011.  This year many of you received a special holiday card picturing Delaney's award winning artwork of a Christmas tree.  We also included a picture of our beautiful girls from our "Wishes Can Happen" Disney trip in April.  Usually my wife writes a summary of our year and includes it with our cards.  She always chooses a beautiful quote, and it’s full of little details about our family and what we have been up to.  I know she tried a few times to begin one in the last month, but she really didn’t have the heart. 

Christmastime for me begins when one hears Christmas music on the radio all day.  For some reason, the carols and the music surrounding the holiday begin to soften me to the spirit of the season.  If I could I would listen to Christmas music 24/7.  Our iTunes library has so much Christmas music you would think it almost strange.  Why someone needs twelve versions of “The Little Drummer Boy” I’m not sure, but we have them.  My all time favorite has to be Nat King Cole's "The Christmas Song."  It describes a picture perfect, storybook Christmas. 

Our family has a tradition of decorating our home for the season on Thanksgiving Day.  Personally, I love the way our space looks with the Christmas tree, all the smaller Christmas trees scattered about, and the seasonal knick-knacks on the tables and shelves.  I especially love the Willow Tree Nativity displayed in a place of honor.  Since our first Christmas together in 1999, before we were even married, my wife has slowly added a few beautiful things to our collection each year.  Our tree is full of meaningful ornaments that tell a story of who we are.  It gives the house an even more cozy, comforting appeal, especially this year since we live in a lower level (basement) setting.  The decor usually lasts until the first weekend in January when it's time to begin a fresh new twelve months of life.  We are always a little sad to take everything down and store it away.  The house always seems a little “blah” until Monica begins to introduce some subtle d├ęcor changes for spring in March or so. 

Our holiday season started off on the wrong foot.  I recall sitting in a hospital room in Maryland on Thanksgiving Day when the nurse came in stating everyone would get a "turkey dinner" that day.  They skipped me because only patients get fed.   Neither Monica nor I had an appetite that day anyway.  Besides, there is no substitute for a huge oven-roasted turkey set on the table surrounded by your family.  We were stuck in a hospital room, again, away from our children, again, counting down the days until we could get home.

Christmas fared a little better.  Knowing we would not be home for Thanksgiving, we managed to get our heirloom ornaments up on the tree a little early without breaking a single one.  Even with Monica secluded in her recovery house alone, the kids and I managed to wrap a few gifts and set them under the tree.  "Wrapping" a present sunk to new levels without Monica there to organize and supervise.  Monica always says, “God is in the details.”   She applies this to gift giving in a special way.  For the girls and I it was tape and wrapping paper only; no ribbons or bows and no nametags.  I think it was my father who first broke out the black Sharpie as a suitable substitute for nametags.  I had flash backs to the year my mom died on December 29th, 1984.  My dad left a blank check on the counter for my sister and I to go buy a tree those sad weeks before Christmas as she slipped away.  I am not sure who bought us gifts that year.  I guarantee you they didn’t have bows or tags. 

I began to try to settle into my role of “Mr. mom” and keep things as light and cheerful as I could for Delaney and Danica.  Presents began to arrive in boxes from family and friends who so dearly remembered our children.  The week before Christmas two huge totes of gifts all selected and wrapped arrived from our church’s Jr. High group.  The girls were sure this was going to be the best Christmas ever.   Even though the presents under the tree were satiating my children’s Christmas hopes, I still remained alone without my best friend and wife.  Monica was spending her days at the vacant house on the lake twenty minutes away.  She would try to call and "check in" but usually I was busy with chores and upkeep and the kids were usually off playing or deep into a movie.  Her calls left her feeling like we had in a short time moved on without her.  They just reminded me how hard this was for all of us.   It helps a little to have fellow adults just upstairs but after the kids go to bed the evenings are lonely as are the early mornings.  The days leading up to and the days following Christmas just didn't seem festive.  The heart of our home is gone. 

Monica spent Christmas Eve and Christmas Day with us at our home, but she was in no condition to play her part as mom and wife.  In fact, it was actually nerve racking to see her try to resume her natural instincts to control her environment.  While she should have been resting in bed, she was cleaning the house and trying to organize everything the way she needs and wants it to be.  This was very frustrating to witness, and the two days passed by quickly.  When Monica’s parents are available to watch the girls overnight I have been able to go stay with Monica a few nights.  These visits at the lake house are rewarding, but I feel more like an out of town relative.  We usually catch up on news or plan the next few days. 

So with the Christmas gifts unwrapped we gave thanks for the birth of our Savior and Monica returned the next day to her recovery house.  I began to box up all our decorations early.  As of Wednesday evening our basement is back to “normal”.  Christmas plus two days and it's over.  A Christmas solstice I call it.  It seemed like a moment instead of a season.  It’s come and gone just like that, and I just don’t feel right.

Our family continues to manage adversity through God’s strength.  Our two daughters are healthier now as ever.  Delaney has a lifelong friend in her new puppy Twixy.  She is doing really well in fourth grade at Lake Center Christian School.  Danica is excited to begin pre-school there in early January.  She loves attending Sunday School and AWANA at church.  She is hungry to experience her own world and finally be well enough to spread her wings.  Danica is now the second bravest girl I know.

Monica is recovering in peace thanks to a family I have not even had the pleasure of meeting yet.  Their lake house is perfect for Monica.  So many times over the last four years I have prayed I could give her a true period of rest and soul healing.  God knew she needed this time and space.  When I'm there I like to lay on the couch and look almost straight up through the large window panels to see a bright shining star overhead.  In the daylight, the sun's reflection off the water casts dancing shadows on the walls.

I tell people I am doing "lovely" should they inquire, but I am extremely frustrated internally.  I am grateful for food and shelter.  We would have never made it through the last year without Monica’s parent’s generous opening of their home to us and constant help in caring for our girls when I am working.  They have made huge personal sacrifices to get us this far.  I am blessed with the family God has given me.  The company I work for is stable and has a "whatever it takes" attitude when helping those in need.  I am completely out of paid time off but am covered with FMLA for the inevitable doctor’s appointments and trips that still need to be made to maintain Danica and Monica’s care.

I miss my wife in a way I cannot explain.  She is part of me, and it is missing when she is.  Still, I fear that when Monica returns to her living quarters, her soul may be dampened.  I see how having her own space sparks her great hope for a home of our own again.  For the past several weeks her spirit has been given plenty of gracious sunlight.  She has meditated in a quiet, spacious environment.  She has time to follow her call to write and follow up with friends and family.  When she returns to our dim basement environment and especially our bedroom without any natural light or fresh air I know it will take a toll on her physical, mental, emotional and spiritual well being.   She longs to create our own family rhythms again.  She wants to cook dinners in her kitchen and have family meals and play our playlists as loud as we want and just be us. 

I stayed with Monica last night.  We had a fight.  We rarely fight, but there was something about our anticipation of seeing one another and then sitting across from one another on the couch and talking about our open wounds that made us both sad and helpless.  We made up, of course, and I wrote her loves notes to find when she woke this morning since I slipped out early to work.  God has humbled me.  Much of the “shame” I have wrestled with has turned into the realization that I am doing the best I can and the most I can right now.  My income is steady but not a lot compared to what life has handed us.   $7000 is taken annually from my pay for benefits.  But, I have a job.  For almost four years I have been able to provide health coverage for my family who lives and breathes by access to medical care from some of the best specialists.  I have always looked to Monica to help.  She always has.  When she resigned from her job last October to care for Danica and her recovery we knew it would be very tight.  After we moved into her parent’s home her health declined so greatly, and I began to wonder if she would ever be able to help again.  I wonder how will we ever move forward from this seemingly impossible situation back to our own home, the one thing I know we all really need to fully heal.

Monica dreams of working again.  She is always amazing at anything she does.  Her hopes are to somehow be able to do some kind of work by at least this fall when Danica could go to preschool fulltime.  I dream of living in the small home for sale across the street where we live.  It is a modest home all on one floor with plenty of sun-filled windows and just big enough for our family. We would still remain close by to Monica's amazing parents and her grandmother and great aunt, Anna Mae, to help care for them.  It is the dream I dream over and over again every night almost as if wishing and praying hard enough will somehow make it happen.  I want Monica to come home from her follow up visit to Dr. Henderson in late January and take her there and unlock the door.  As the new year approaches I have no resolutions.  I read this quote the other day by Harvey MacKay.  "A dream is just a dream.  A goal is a dream with a plan and a deadline."  There is no way I can make any kind of plan to make this dream come true.  There is no way I can set some kind of deadline for our family to return to our own space, fling open the doors and windows and shout, "Praise God, we finally made it!"  I have to continue to believe God has a plan.  He has never left us.  He has cared for us in unimaginable ways.  He has accomplished impossible things.  I will continue to hope. 

Sunday, December 25, 2011

A Secret Gift

By His Grace.  Through His Strength.  Dan.  Delaney.  Danica.

I wanted to write this post as a Christmas letter and physically include it with our cards and email it to our cyber friends, but I have wrestled with it in a strange way.  I have started and deleted several "drafts" with words that almost express the feelings but never really seem to do them justice.  This morning I am inspired to try again by a gift that was waiting for me under our tree.  No one knew who it was from.  It was wrapped in the most beautiful red polka dot paper, tied with a "Tiffany" blue ribbon and one simple pearl.  The stunningly simple hand stamped necklace reads my life mantra and the names of my husband and girls.The note which is photographed above as well reads:

"A very merry Christmas to you from The Vintage Pearl.
We asked our blog followers to nominate someone special for our
giveaway . . . and . . .
You have been nominated by someone special for our "Share a Blessing" give away!!!"

I cried.  It is the perfect SECRET gift. 

I came home from my "rehab" lake house yesterday morning to rejoin my family for a few days to celebrate Christmas.  By last evening I was in so much pain and every part of my brain was haywire.  There was a new puppy in the house and clearly the routine we have lived by for years has been put out to pasture since I have been away.  In the month I've been gone my family has managed and in the process my space is very different.  Every single one of Danica's toys was disorganized.  You only understand this if you have seen my VERY particular way of keeping my girl's things in marked Sterlite containers with a hard and fast rule.  "If you get something out you put it away.  Then AND ONLY THEN can another toy or activity be introduced."  I often scratch my head when I read people's facebook posts always remarking how messy their houses are.  For me it's really this simple.  Apparently I am the only one who took this seriously or enforced it.  I kept finding Squinkies and Barbie things and marbles and stickers and Disney Princess dress up and Strawberry Shortcake things everywhere.  Her closet is like someone stuffed everything in there because they knew I was coming home.  I was flipping out and just as expected began trying to remedy the situation and bending my back and neck which is totally not okay at this point in my recovery.  I began to hurt very badly and also started to cry and sob.  Everyone kept telling me, "Go get in bed."  But who was going to coordinate the reading of the Christmas story and prayer and opening Christmas jammies and writing notes to Santa and putting out cookies and milk for him and carrots out back for the reindeer?  We pushed through these traditions with Dan and my dad and my mom helping, and I collapsed into bed.  The night was almost comical.  Danica tried to sleep with me and kept coughing and kicking me, and I truly did not sleep a wink.  Poor Delaney was spending the first night trying to figure out how to mother her new puppy, Twixie.  Just like an infant she wanted to be held and attended to and Delaney came in crying, "I don't know if I can do this."  Dan intervened.  I think we both just prayed for morning to come, and it finally did.

I have never seen so many gifts under one tree for one family.  Dan and I truly bought our girls each a couple simple gifts and did stockings with a secret monetary gift given to us for that specific purpose.  You see a family like ours feels guilty when we spend money on anything except trying to pay the many medical professionals who have served us and saved our lives.  The mountain of debt we have accumulated is not from mass consumption.  It is from survival.  God knows our hearts.  He brought us here.  Through wisdom we have tried to pick and choose who we can pay and when and then leave our anxiety about the rest with The Great Provider.  The abundance today was completely overwhelming.  How in the world can our family be this loved and blessed?  Many of the gifts had a name after "to" but no name after "from".  We were adopted by our church's Jr. High group, and they did an amazing job secretly shopping and wrapping and organizing the best Christmas ever when I could not do anything.  Helpless to make any kind of elaborate Christmas happen financially or otherwise SO MANY stepped in and took care of the details.  Even the amazing addition to our family of Delaney's long awaited heart desire, a pup, was an extravagant secret gift from my dad, playing Santa. 

It's noon, and I'm back in bed and have taken a much needed a muscle relaxer and pain medication.  I am exhausted, but my heart and mind are fixated on all of you, the secret givers, the ones who have watched from afar for years now as we have suffered and healed and many times taken one step forward only to fall two back.  Every once in awhile someone will facebook friend me or write me an email or suddenly comment on the blog admitting they have been reading and praying and often God provides for our family in times of great need at the very last minute from the most unexpected person or place.  It's beautiful and life changing.  I know there is an entire book waiting in just those stories. 

I am inspired to begin to document them all because of a very special book I know God did not bring into my life by accident.  The title is A Secret Gift.  It is a beautiful true account written by Ted Gup about a campaign his grandfather began in Canton, Ohio in 1933, during the depths of the Depression.  He placed a very simple advertisement in the Canton Repository on Monday morning, December 17th, that read: 

In Consideration Of The White Collar Man!
Suppose if I were confronted with an economic situation where the bread of tomorrow is the problem of today—there is a question in my mind if I would accept charity directly offered by welfare organizations. I know there are hundreds of men that are confronted with economic problems and think, feel and act the same way.
To men or families in such position the maker of this offer, who will remain unknown to the very end, will be glad if he is given an opportunity to help from 50 to 75 such families so they will be able to spend a merry and joyful Christmas.
To such men or families that will request such financial aid, the writer pledges that their identity will never be revealed. Please write:
B. Virdot, General Delivery, Canton, Ohio
In writing, please familiarize me with your true circumstances and financial aid will be promptly sent.

My book club, who I've written of many times, chose this book as our December selection.  I had not purchased it or checked it out of the library when I was headed for surgery in late November.  I couldn't read anymore for any length of time because of the crushing headache and black floaters in my right eye and the way my right hand would go numb when holding anything.  The Saturday before we left for Maryland my parents took me to the beautiful home on Lake Cable I am recovering in.  Again, this place to stay was a gift from strangers to me, children of friends of my parents.  The only book lying on their console was "A Secret Gift."  It was signed by the author.  Ten days later I returned from a mountain top experience.  I know, brain surgery and spinal fusion aren't usually described this way, but I knew I was healed to some degree already.  Hurting, yes, in all the ways you would expect after such a major operation, but I could see without a single black floater.  Although my incisions and nerve numbness were very painful I did not have a headache and my hands were not numb at all!  I think I slept the first couple of days at the lake, but my first order of business as I came out of the fog was to dive into Ted Gup's book. 

I'm not going to give much away, because I hope you will buy it or borrow it and read it.  It's an amazing historical account of Canton during the Depression.  Most importantly it is a story about a man, Sam Stone, who had been blessed and sheltered in some ways from the economy, made up a fictitious name and reached out to others in need at Christmas.  Many of the letters he received are included in the book as people wrote for just a little something to feed their family or surprise their children with needed shoes and coats or a trinket of Christmas joy.  Some of the letters were sent as "nominations" for others similar to what happened with the necklace I received today and the secret Christmas money we received as a family from a plea sent out by another stranger who has been quietly following our story.  The most important theme through the entire book is how often by sharing what we can with others it is not really the gift that endures but the HOPE there is love remaining in this harsh world, and we are not alone.  The families in the book were hard working and proud.  When the economy plummeted and their lives spiraled out of control there was no amount of gumption that could save their jobs or the money they had saved in banks that folded.  They were victims of similar circumstances that have brought our family to this humble place without a home of our own and so dependent in many ways on the care of others.  Five years ago we would have been considered well to do, upwardly mobile and the ones most likely to give charity.  Here we sit humbled beyond measure by God's change in plans for our life and by YOUR love. 

Really, this post is a thank you note to each and every one of you who has given in big and small ways to us quietly and secretly and out loud.  We can never repay you personally, but we pray fervently God would bring us back full circle to give to others as richly as we have been given to and even more abundantly so.  We love you, those we know and those who have stayed hidden for years reading our story and faithfully praying for us.

Merry Christmas.  May you know the HOPE we have come to live in By His Grace.  Through His Strength.  Dan, Monica, Delaney and Danica

Thursday, December 22, 2011

What kind of God?

“What comes into our minds when we think about God is the most important thing about us.” ― A.W. Tozer

In my recovery I've had the privilege of much more time than usual to spend reading and praying and searching my heart.  One of the greatest struggles I have had since a child is reconciling theology taught to me from a young age, some very right but taught in a wrong spirit and some clearly wrong, with my own reason (always a minefield) and also the pull of humanism and all kinds of other religions that sell a different God than the Bible and TRUTH. Yes, a dirty word, but I'll say it.  The above quote has been critical to me this past year as I have grappled with the question asked for centuries, "What kind of God could allow . . .?"  You can pretty much fill in the blank.  There are so many really hideous things happening in the world today.  As God has enlarged our community through Danica's illness and mine we are open to even more suffering than I ever thought I could bear.  When applied personally to our lives it leaves some people who don't know God watching from afar scratching their heads.  How can they have endured so much pain and loss for so long and still say it comes from the hand of a LOVING God who has planned it all from the beginning?  How can they bless His name and give Him praise for even all these bad things? 

In my own Advent worship I've been reading the different gospel accounts of Christ's birth.  Like many passages in the Bible we seem to gravitate to and focus on parts of the stories that make our hearts swell with emotion.  Every one loves a choir singing of peace on earth, goodwill towards men and a baby that doesn't cry.  The miracle of the birth of Christ has been read through time, embellished and romanticized, sung about in carols and celebrated by many who never really desire to understand the rest of the God who WAS the very human baby Jesus born in the manger so long ago.  Mary is celebrated.  Joseph was the best "baby daddy" ever.  The wise men and the shepherds are heroes.  Truly, there was so much more going on there that night than the nativity scene we set in our homes and altars.

As I was reading Matthew's telling of the Christmas story I faultered a little when I got to the section "Massacre of the Innocents" in chapter 2, verses 16-18.  I knew it was there, but only because Herod is generally told as the "bad guy" in this epic, and He wanted Jesus dead in the off chance he really was going to become the literal "King of the Jews."  I don't remember anyone ever preaching about these verses in an expository way or focusing on them at all.  I think we always just kind've stop when Joseph whisks Mary and Jesus away for safe keeping in Egypt and then fast forward to Christ's "idyllic" childhood in the carpenter shop once they return.  Not much else is told to us until we get into the thick of His earthly ministry leading up to the greatest sacrifice, His death on the cross for our sins.

Here's the verses so you don't have to run and look them up:

"Then Herod, when he saw that he was deceived by the wise men, was exceedingly angry; and he sent forth and put to death all the male children who were in Bethlehem and in all its districts, from two years old and under, according to the time which he had determined from the wise men.  Then was fulfilled what was spoken by Jeremiah the prophet, saying: 'A voice was heard in Ramah, lamentation, weeping, and great mourning, Rachel weeping for her children, refusing to be comforted, because they are no more.'"

What kind of God needed to allow every other baby boy to be murdered to fulfill His saving plan?  If Christ's death on the cross was such a great sacrifice then what was this?  Every single family with a baby boy two and under in the region had their sons snatched from their homes and brutally killed.  We start in Matthew and separate the Old Testament law from the New Testament and grace.  There are so many beautiful truths about how the saving work of Christ changed how we access God and how we are forgiven.  Praise God it is finished.  There is no more need for continual shedding of blood and sacrifices on man made altars.  So why this great sacrifice of all these lives as soon as the Savior finally enters the world?  Is it just to fulfill a prophesy?  If so, why?  Do I really want my God to be a God who says, "Because I said so."  If I didn't have the light and the grace of the New Testament would I believe in the Old Testament God?  Here's the thing.  He never changed.  The person and work of Christ did not change the Alpha and Omega.  He was and is and is to come.  He gives and He takes away.  He wrote this story from beginning to end before any of it was spoken into existence.  Blessed be His name.

So what comes to mind when I think of God?  What kind of God needed to allow the physical pain, emotional suffering and loss and financial ruin to our family these past four years?  If He loves us so much that He sent His only Son to die for every single one of our sins why would He let us be hurt this way for so long?

If you read back to the beginning posts on this blog you see so many of these questions written and wrestled out loud by Dan and I.  The doctrine of God's providence was something we knew but had never been asked to believe in like this.  The answer is simple.  God is God.  His ways are so much higher than ours.  His purposes are always about the soul.  We see in a mirror dimly what will someday be shown clearly to us face to face.  We will know what is already known by Him.  We are so much more than flesh and blood.  We are made in His image.  Who are we to travel back to Eden and believe the lie we could ever be as wise as the one who made us, gave us breath and chose us to be redeemed?  Every single bit of this is more than we deserve.  It is all grace and we walk by faith.

In my very first post about Danica's Chiari diagnosis I ended with a quote from Oswald Chambers.  I committed it to memory and have returned to it a hundred times in this walk.  It is the answer to the question that still nags on days like today when my family seems so far and pain is still oh so present and the future seems unclear.  What kind of God?

"Living a life of faith means never knowing where you are being led. But it does mean loving and knowing the One who is leading. It is literally a life of faith, not of understanding and reason — a life of knowing him who calls us to go."

As I sit at the manger and think and pray about a new year I am asking for God to turn my heart and mind from the uncertainty and fear of what could come next and from asking the questions about how in the world could we ever really be healed and restored to just wanting to KNOW HIM MORE, listen to His call and go where He leads.  It really is that simple and beautiful.

Sunday, December 18, 2011

The stone

I've written about the importance of stones in my life before.  I have a bowl of special ones in a place of honor in our home I sometimes choose to hold when I pray, and I have a treasure box where I keep stones I've found or my children have found and lovingly given me.  It's a part of the Jewish tradition I was seemingly born knowing about and embracing. 

I read this poem by Barbara Crooker in a lovely book of comfort prayers my friend Lee gifted me the week I came home from surgery.  It was as if it had been written for my family and I.  Like most poetry I read it many times before I could understand it.  Different things would soak in as I turned the words over and over in my head and heart much like you get to know a rock or a pebble if you hold it long enough. 

Tonight as I talked to Dan and the girls on the phone my heart swelled not with sadness but with the most powerful gratefulness that through God's grace we have carried our stone and polished it through tears and pain and grief into something shining and so beautiful you can scarcely look at it.  I hung up and opened the book back up to the marked page.


The stone
was heavy.
The family carried it
with them
all day.
Not one could bear
its weight, alone.
Yet how they loved it.
No other stone had
its denseness,
its particular way
of bending the light.

They could not take
the stone
out in public,
had to keep it at home,
let it sing songs
in its own strange language,
syllables of schist and shale.
When the mother's back ached,
the father took the stone
for awhile, then passed it
from sister to sister.
The stone became
a part of them,
a bit of granite
in the spine,
a shard of calcite
in the heart.
its weight
pressed them thin,
as wildflowers
left in the dictionary.

it was
than air.
The stone
did not talk
But it shone.

2007 was the year Danica was born and our journey of living with way more than we ever needed turned into waking in the morning and looking for manna.  It was the year I spent months in the hospital and sent my Laney away to Ohio and our miracle baby came to the world and then the NICU.  It was the year we lost our credit and the ledger sheets turned upside down into zero.  We had no money for gifts at all yet somehow Dan scraped together the money to buy me a beautiful inexpensive necklace from a little shop I loved in downtown Rockville, MD.  It had a simple gold leaf pattern covering a silver rectangle with a quote engraved in the metal. It read,

"The most beautiful stones have been washed by the waters and polished to brilliance by life's strongest storms." 

I have since parted with the gift.  I gave it to someone I love who was going through a strong storm in her own life.  It meant so much to me that gifting it seemed like the only way to really show her how much I cared and understood and so I painfully passed it on.  But the sentiment stays with me and reminds me how Dan and I believed we were coming out of the storm that day he gave it to me, and we thought we had carried the heaviest things God could possibly ask us to.  Little did we know He would give us so much more bear for so much longer.

I see now more clearly than ever how being polished and changed into something that shines for the glory of God is a gift beyond measure.  I hope and pray a long awaited time of calm and restoration is coming soon, but my heart is ready for whatever He deems best. 

While we watch and wait to see what God will do next our family will continue to collect stones as reminders of God's faithfulness.  He is our Ebenezer. 

"Then Samuel took a stone and set it up between Mizpah and Shen, and called its name Ebenezer, saying, "Thus far the Lord has helped us." I Samuel 7:12

Wednesday, December 14, 2011

Howard Hughes and things I'm missing

I think I'm maybe just a little grumpy today.  I figure I'm entitled to have a day or two when the barometric pressure reminds me this surgery is not a total fix for the complex medical issues I have, some of which will be a life long struggle for me, and I still just let myself go to a discouraged place for a little while.  I've been trying to hard to focus on all the amazing positive gifts God has given and the healing.  If I'm totally honest, I've even been playing the Pollyanna "glad game" to try and keep my mind/body connection moving in a forward direction.

I woke up this morning to cold rain and my head hurts.  Thank goodness, it's nothing like before, but still really bad, especially where those crazy screws were in the top.  I think I'm still miffed I just never realized they were going to screw my head to something.  How could I not have known that?  My joints hurt.  This is my EDS.  I cannot be cured of this or even have it "fixed" in some way by a surgery.  I will see the geneticist in Cincinnati in February to discuss management and possible treatments to help me deal with this ongoing pain.  But realistically it's just something God has asked me to do.  Much of the widespread pain I had before my recent surgery has resolved, especially the neck and shoulder pain which was unbearable and crippling.  I was cautiously optimistic because of all the drugs I have been taking.  As I have been working on dialing back the medication this week, I still feel so much better overall than I have in years.  This is good.  Very good.

I think it's the annoying little things about my recovery and new "disabilities" that I'm finding hardest to cope with and maybe just a little bit of loneliness for my husband and my kids and my space.  Yes, I even miss my basement home and "bomb shelter" bedroom over this gorgeous light filled space, because it's where my people are. 

I thought I'd make a little list of things I miss.  Maybe it will help ME to appreciate them if and when I ever get them back but maybe just maybe it will make YOU feel more sane and more grateful today and even make you laugh a little which is the best medicine, right?

1.  Shaving.  This is not a random choice for number one.  I have not been able to shave since the morning of my surgery.  I am Howard Hughes in sooo many ways and hair removal tops my list of OCD issues.  I cannot in any way move my neck and head and body to shave.  Last week when Dan was coming for date night I thought I would at least try to shave my armpits.  To my horror I realized I cannot look over to the right and left enough to even see them.  This is a problem, people.  short of beginning a fund for laser hair removal or finding a stranger to come wax me periodically because a friendship would clearly be ended over this kind of interaction, I am in trouble.  BIG trouble.  I spend a lot of time thinking about how to solve this problem . . . SOON.

2.  Tweezing.  In the same vein, but also a critical part of my hygiene, I tweeze daily.  I tweeze my eyebrows and any random facial hair and my one genetic chin whisker that pops out without warning.  Again, I cannot move my face or head or hold a hand mirror or in any real way get this properly accomplished.  It is making me crazy!  At home I would climb up on our bathroom sink criss cross applesauce and tweeze.  My husband and kids know if mom's in the bathroom for more than a half a minute and if the door is locked this is my "me" time.  One of my requests to Dan if I ever become a "vegetable" is please, oh please, have someone come and tweeze me.  Last night I even forgot I cannot look down at my own body and see my own boobs.  I was worried.  Don't worry, I don't have "hairy" boobs, but you know how every once in awhile there is a hair that appears and needs to immediately be taken care of.  It's something women in our culture don't just do.  We take it seriously.  We don't speak of it even amongst ourselves, but it has to be done to keep the civilized world running.  Well, I've outed us.  Things are spinning out of control. 

3.  Caring for my feet and toenails, oh and clothes.  I should have gone for a pedicure before surgery.  It's not like I could really even hold my head up or felt well enough to care but now I do.  I would ask someone to drive me to get one this second.  I would spend money to have someone else fix these rough feet with nails too long and polish grown out except for the above mentioned issue of unshaved legs.  I would be too embarrased to have anyone near my feet and legs to let them do my toes.  Add on to this not wearing anything besides sweats and pajamas, ugly flat shoes and a pony tail for months and a self image problem emerges.  Yes, I am so much more than clothes and hair and toenails too, but I'm the classic beauty, right?  For years I have worn timeless clothes and beautiful scarves and simple jewelry which everyone wondered how I could afford when the truth is I probably bought them at least five years ago when I could afford them, but they are gorgeous still because they are classics.  I haven't bought real clothes in a very long time.  I really want to be pretty again, not in the vain sense but in the "her clothing is fine linen and purple" way.  Oh, and I bet that virtuous women had trim feet.  I'm just saying. 

4.  Driving.  I drove very little for months before my surgery because I had passed out a few times and frankly after seeing the 3DCT of what my neck looked like when I turned to the right or the left I realized I was most likely putting my own life and the lives of others in danger by continuing to drive.  Not to mention I could barely get out of bed anyway, and we only have one vehicle.  I have been home bound for so long you would think this would be further down the list but I REALLY miss being able to go putz for an hour at Marshalls or go to the grocery store and pick out what I want to eat.  I'm so tired of wasting so much time browsing online sites for little Christmas stocking gifts I could just get at Walgreens if I could only go there.  I wish I could pick Delaney up from school or take Danica to Chic-fil-A.  I've had my driver's license since the day I turned 16, and I have always associated driving with freedom and the ability to escape any situation when I need to but also make something happen when I want to.  These things are gone now.  I do not know when I will be allowed to drive again or how easily I will be able to with my new "range of motion."  I think about it a lot.  If I get special big new "old lady" mirrors don't laugh. 

5.  Drinking.  drinking alcohol is a Christian liberty issue I'm in no way prepared to address here and certainly don't want to get private emails or facebook messages about it.  If I cause you to stumble dear brother or sister, I am sorry, and we can address that in a different forum.  Technically it has been months since I've had anything to drink so it's a non issue right now.  That being said, oh how I miss having a glass of red wine.  It makes me almost cry.  Anyone who knows me well knows I always had at least a split in the fridge because at any moment something might need to be celebrated.  Life and champagne are friends that must hold hands often.  I really want to "Cheers!" something soon.

6.  Cleaning.  This is a little sick but then again if you've read this far you get the picture.  I am desperate to clean something.  It really hurts me to want to do this so badly and truly be physically unable.  Now that I've been living here two weeks I've figured out how to swiffer the hard woods for "exercise" to avoid blood clots and yes, may empty my bathroom trashcan EVERY morning, but I want to vacuum and dust and clean my toilet, and I can't.  My own family has been taunting me about how they are living the life over there.  Delaney tells me, "Dad let us make a big fort of blankets and pillows and animals and then we just went to bed and LEFT IT THERE." 

7.  Tucking my girls in.  Listen,  all this other "coo coo for cocoa puffs" stuff aside, if you get to be there every night to tell your kids you love them, sing to them, read to them and tuck them in knowing they will be the first thing you'll see in the morning, thank God.  Don't rush through it no matter how tired you are.  In all my years of illness and pain this is the one thing I always pushed myself to do.  It is the thing my girls are sure of.  It's the thing I will do long past when they want me to and the thing I'll cry about every night after they leave for college or whatever else God might take them away from me to do.  I snuggle in and talk to them and ask them questions about what made them happy or sad that day and we pray and we pick a sleep playlist, and I stroke their hair or rub their back, and they know, they know without a doubt, they are loved and safe and no matter what it's going to be alright. 

And you thought I wasn't going to make you cry today! 

Monday, December 12, 2011

21 days

Seven days times three is supposed to be the all important milestone for all kinds of recovery and healing.  I made it!  Three weeks ago today I did the bravest thing for mysef I think I've ever done.  I had brain surgery and spinal fusion.  I had come to a point of pain and suffering that left me almost incapable of living any real life.  I was as desperate for help as one can get.  I also had a peace beyond measure God had brought me to the right surgeon, the right hospital and the right time and watched Him provide in every detail as we prepared.   I was so ready.

My sister-in-law, Amy, who I've written of before, because she has walked with me some of the loneliest days and nights of my life and is always there to handle things when everyone else can be sure to fall apart.  She is one who was there with me the morning of surgery.  She stayed at the hotel the night before and took me over to the hospital to get the ball rolling with all the pre-op stuff including my PICC.  I can't really write about how much I love this lady or how much her being there with me meant to Dan and I.  She knows how to say or do the perfect thing to remind me I am a "Warrior Queen."  She tells me I've got this, and I believe her. 

I haven't wanted to really speak much yet about my actual surgery experience or how I'm feeling although I cry about it several times a day.  So many of the risks come after you leave the hospital. I read the Caring Bridge sites and facebook posts of other ladies who had similar surgeries who are having complications.  As someone reminded me this past week the kind of healing I'm doing is a marathon not a sprint.  You have to stay the course.  You have to endure the pain and sacrifices now for the best finish. 

I know many have wondered why I am staying away from my family.  All I can say is you either understand or you don't.  I have had other major surgeries where I tried to recover around my children, including a hysterectomy right before Danica's brain surgery and spinal fusion last year.  You cannot keep me down.  If I am there and something needs done or one of my children in reality needs me or even thinks they need me I will get out of bed.  I will lift something.  I will bend over.  I can push through any kind of pain even to my detriment to do those things I think must be done.  It comes at a high price with abdominal surgeries, yes, but the price here is one we can't pay.  Like Danica's recovery, this is a one shot deal.  It's one of the biggest blessings and greatest specific answers to prayer that I am here in this beautiful home resting.  It is also one of the things that hurts the most.  To be away from my husband and children, especially this time of year, is another wound I'm watching and treating.  Much like the strict obedience to doctor's orders we exercised for an ENTIRE YEAR which undoubtedly aided to Danica's healing success, we know for sure there is no gray area in the things that will help these bones fuse and make this healing a full reality for my family and I.  We did not come this far to turn back or even cut a few corners for momentary relief.  This has to work!

Another important component of my healing is also this space and time and quiet.  My life has been hyperfocused on Danica and I's health for well over four years now.  I need in many ways to sit here at the feet of Jesus in puddles of sunshine remembering who I am in Him.  I need to be doing nothing.  I need to pray and journal and dream about what I could possibly do with my life if He makes me well.  Most of all I plead with Him daily to let me in no way squander the soul clarity He's given in this long journey.  This currency is priceless.  What would He have me do with such a gift? 

Here I am after my surgery with a big thumbs up, something I learned from my brave Dani Jean girl.  21 days.  I'm also posting the pictures below Dan took Friday night, at 19 days, of my incisions.  Our hope remains!

Sunday, December 11, 2011

The armor of light

“I cannot cause light; the most I can do is try to put myself in the path of its beam.”  Annie Dillard

My love affair with "shafts" or "puddles" of light is told over and over in journals since I was a child and even in my blog posts.  I've spoken of it many times and perhaps wondered if (in addition to the crushing of my brainstem and spinal cord) I became so much more ill when I moved into the basement of my parent's home because I was buried in a way from the one thing that helped me survive and grow just a little.  Since our move in late June I was so often curled up in my room, a place with literally no natural light, holding my head with the soul sapping pressure begging for relief and praying, yes, for a breeze from the outdoors or a spot of sunshine to remind me LIFE is LIGHT. 

Since my surgery, for the first time in my life, I have become a night owl.  I think it may be the prednisone I am on for recovery, but I am up for hours past what would be my normal bedtime.  Because of this and my lack of parental responsibilities while here alone I woke very late this morning with the warmest, brightest beams shining in my room across my bed, my face and my heart.  After I remembered where I was and assessed my pain level (much higher today for some reason in the top right hole in my head where the screws were) my thoughts were drawn to my Savior, the light of the world, sent in a time of great darkness and hopelessness.  People had been waiting so long for their Messiah.  When would He finally arrive?  How would He come?  Would they know Him when they saw Him?  What would salvation really look like? 

I understand in many ways how discouraged they had become.  Since my pain became so debilitating I completely quit trying to put on the armor of light at all.  Frankly, I don't think I could even lift it.  Remember the Valley of Vision?  It's often in the darkest places the glimmer of light is most visible and most valuable.  We HAVE to walk through the darkness to appreciate the light when it comes.  It will come.  It always comes.  He IS the light.  He IS life. 

"Then Jesus spoke to them saying, 'I am the light of the world.  He who follows me shall not walk in darkness, but have the light of life.'"  John 8:12

In this Advent season I am missing our nightly family ritual of lighting candles and reading and singing about the hoping and the waiting.  I am expectant alone here in this beautiful quiet place God has given me to rest.  To really celebrate and put back on the armor of light He has asked me to live in valley of the shadow of great suffering for a very long while.  For years He has been gently teaching me darkness is not a place or time in history or a circumstance too heavy to bear, it is THE WAY into His glorious light. 

Put on the blanket of truth. Put on the mantle of hope. Put on the armor of light.  Cast off all those other things during this season that hinder you from putting yourself in His beam and resting awhile.

"But you are A CHOSEN RACE, A royal PRIESTHOOD, A HOLY NATION, A PEOPLE FOR God's OWN POSSESSION, so that you may proclaim the excellencies of Him who has called you out of darkness INTO HIS MARVELOUS LIGHT."  II Peter 2:9

Saturday, December 10, 2011

Silly pictures

I thought I'd share the funny succession of pictures I wrote about the other day.  I am missing my girls like crazy tonight and just looking at their sweet faces makes me happy. 

Here's the first picture.  I'm hopeful at this point.  Delaney has her beautiful new dress from my sissy on.  Danica is wearing a dress much too big for her and her bangs are in her face.  Easy fix, right?
Somehow while Danica was being changed into her gorgeous coordinating dress and getting her hair done Delaney scouted a new strange outfit including a red polo shirt packed away in a summer clothes Rubbermaid.  Look how beautiful she is no matter what she is wearing.  I'm still wondering where in the world that silver scarf came from though. 
And then there is this girl . . . my baby bird who has grown such strong wings the past few weeks.  Look at that neck!  Remember where she was a year ago?  Can you picture her strapped into that storm trooper brace in her wheel chair?

Our hope has never disappointed us once.  So much prayer.  So much faith in our God no matter what the outcome.  Taste and see the Lord is good!

Wednesday, December 7, 2011

If I only had today, a post for Laney

This blog, although named for Danica, really has journaled our entire family's heart the past years. I have written several times specifically about my Delaney Jayne and how this life God has chosen for us hurts her perhaps the deepest of us all even though she seems to show it the least. Lately, I have been understanding more and more how I have repeatedly failed to trust God with this precious child in ways that are are easy for me to give Danica or my marriage over to Him. I have had the most control over what I wanted her life to look like and be like early on and as it has slipped away from me I have felt desperate when it comes to my love for her and my inability to really communicate to her how much I want her to be okay and grow strong and true through this stuff.

Last night was her Christmas program. I was trying to direct preparations from here over the phone. Dan sent me a picture by email with Delaney in her new holiday dress from my sister, Rochelle, and Danica wearing an old Christmas dress that is a size 8 hanging in the back of her closet for a hand-me-down someday. It was all falling off her shoulders and her too long bangs that need trimmed were falling in her eyes. So, I called and let him know Danica's new dress from Rochelle was in the closet. It looks similar to Laney's new one. Please put it on her and explain to her she can wear the other one in two or three years when it actually fits . . . oh, and please find a barrette for her hair and try taking another picture for Christmas cards. Delaney looked perfect.

I didn't hear from them for awhile and later I checked my email to find Danica looking like a perfect china doll in her new dress with ringlets and fancy shoes and tights. Horrified, I see Delaney has for some reason changed into a jean skirt, a black long sleeve t-shirt, a red polo shirt and a silver scarf. I'm aghast. I would post the succession of pictures here, but I truly am too embarrased. Although I know many of you from LCCS saw my Laney get up on stage last night and thought for sure, "That poor girl needs a mother."

I have been working on this "montage" for her for months. I usually do one each year for the girls for their birthdays. They both look forward to seeing them and since scrapbooking is a hobby I once loved but fell to the wayside years ago I like to at least see the year summed up in one place. Around Laney's birthday in September is when my health became so bad I could not sit on the computer to type for any long period of time or focus to write or work on any projects. And so this sat here half way done and kept being moved on my "to do" list.

This morning I woke and had my quiet time at the feet of Jesus. I thought of the very frantic nature of my reaction to something like clothing and what that communicates about my heart to my dear daughter. I thought about what it felt like to be nine. I was oh so strong willed and either wearing a home sewn victorian outfit (wishing it was a real Gunne Sax) with a big hat living in a dream world or dressed in all black and reading poetry by candle light trying to reconcile with a very angry God. I was oh so serious and so sure my mother could never understand me or why I needed to wear black that day or light a candle even though we weren't Catholic. I know I wanted to stand out and maybe just begin a little to have my own style or my own voice in the sea of matching Little House on the Prairie dresses we were asked to wear on Sundays.

If you know Delaney you love her. She is outspoken and opinionated and tells the truth in places we are all too civil to do so. She is wildly creative and happiest when doing anything outdoors or with art. She is already the core of who I know she will fully grow into be. I love this about girls who are nine and ten. I want to protect it from mean hearted people who might tell her to be something else, believe something else, become something else. In many ways I want to protect her from me the most because I know she listens through the yelling that has turned into a quiet whisper of late and needs me to notice her and praise her and hug her and be sure of her when no one else can or will. This is what good mothers do. They learn to edit the voice in their head and listen harder to the heart beside them.

This is what I have missed out on in my absences from my girl. I write to her. I tell her the things I wish I could whisper in her ear, but I know she cannot listen to right now. I remember, Laney, what nine is like. It's okay you wore that crazy outfit last night. It's okay to hear the beat of a different drummer. It's okay to pick something different than I would or your friends might.

In all my life the most important gifts God has given me are my dear husband and my girls. He gave to me real live souls and asked me to care for them. If you are with your children today. If you get to pick them up from school or take them to a music lesson or fuss at them to do their homework. If you get to give them a bath and snuggle and read a book or tuck them in and kiss their sweet head. You are blessed. This is a huge amazing gift. Let the other stuff fall away.

"You are more than dust and bones. You are spirit and power and image of God. And you have been given Today." — Shauna Niequist

Tuesday, December 6, 2011

Lost and gained

"I have lost nothing
in my life
that I could not find again
with God."
Corrine De Winter

It's so easy to feed on loss when days and weeks and months have turned into years of giving up everything we are told means so much to focus on just surviving.  So many well meaning loved ones have said something pithy through our past years about this being a "season" that will pass for us.  They leave on another vacation, or head out to the park to watch their children run and play in the snow or facebook about a special concert or the ballet or a simple shopping trip to the mall to visit Santa.  They pick out shiny outfits with matching shoes and decide on Christmas cards and look at their December calendars full of invitations to parties and celebrations and people who are all glistening in the fullness we are supposed to feel this time of year.  Real or imagined I see the parts being played out around me like I am watching a perfect winter scene in a snow globe.  I want to believe I'll be let back in there soon. 

I can assure you this loss is much longer than a season for us.  This is our life.  Wrapped in strange newspaper recycled with the stories of days of exhaustion and pain and long nights in the hospital and tied with twine borrowed from something useful or given to us in charity our celebration is no less real than yours, but I can promise you it feels different because it has to be. 

I can look back over our "holidays" since 2007, and there are very few things that look or feel like I think they should.  This year is no exception.  My Laney will sing of our Savior tonight on a stage with her class in a special dress my sister chose for her.  Someone else will curl her hair and let her use a little lip gloss.  Someone else will take her picture, and I will miss it . . . again.  Someone else will post on facebook my brave and beautiful girl, and I will be here losing the moment that can't be lived again.  Gone. 

Last evening Dan brought the girls over to have dinner and to visit.  It had been raining hard all day and the pressure in my head was bad.  My pain was bad.  I had been so lonely for these little hearts that move on without me.  I tried to set the table and pour some drinks.  I tried to play the part of mom.  I wanted a dinner where we sat together and talked about our days.  I wanted something to feel even a little bit normal.  I was hurting.  I felt very strange.  The girls were wound up and their laughter and silliness echoed off the high ceilings and hard wood floors.  Someone had turned on "The Fresh Beat Band" on the big screen in surround sound.  I slipped away to the bathroom.  I knew it was too soon to try this.  I was sweating all over and stripped all my clothes off and sat in the bathroom suddenly freezing.  My face looking back at me in the mirror ashen white.  I needed to pass out.  I could hear the girls chasing one another.  I worried if Danica would slip on the hardwood.  I could hear Marina saying something about a groovy smoothie.  Breathe in.  Breath out.  I prayed.  I called for Dan to get the phone and bring it to me.  How would 911 know how to find me?  I had no idea where I was really.  My sweet husband called my mom.  He knew the girls had to get out of there, and he knew I couldn't be alone.  He can't offer me any real care or concern.  This is often lost in our lives now.  We move forward like soldiers.  Emotion is just a waste of time and energy we cannot afford.  The next thing comes.  We love so fiercely we don't need to even say it.  The fact we are still here doing this is the proof. 

Danica brings me in her princess nightlight and says she wants me to keep it in case I'm afraid.  This is a huge sacrifice for her sweet heart.  Danica doesn't want to leave me.  She is crying.   She is not afraid of the gaping cut on my back and neck.  She doesn't wince to see the ugly that might give me the best chance to be healed.  She walked this road.  Delaney needs to leave as soon as she can.  She can't watch this happen again.  She wants to remember her mommy with beautiful suits, high heels and a Louis Vuitton purse and $500 watch.  She wants to remember the mom who had professional decorated cookies made special for each friend in her Montessori and volunteered whenever she could and who took her to Whole Foods for our dinner salad and a fresh piece of fish after work most nights.  She wants to remember the mommy who ordered a Venti White Mocha every morning in the Starbucks drive thru while singing with the radio at the top of our lungs because life was good.  It was really good.  I feel hideous to her now.  Sitting on the toilet with no color in my face, glasses, a tank top showing the huge PICC line bruise on my arm and legs that haven't been shaved for two weeks,  I know she can't look.  She calls, "I love you mommy." 

My mom shows up, and I crawl in bed and cry.  She rubs my back.  It hurts to be touched, but I still need my mommy.  We cuddle up and watch "White Christmas".  I must have moved my position over one hundred times.  I can't get comfortable.  We laugh at the same parts we always have since I was a little girl.  Wallace and Davis doing the sister act comforts me.  I fade in and out from the drugs.  We ate chex for a bedtime snack in red cups with plastic spoons.  Corn chex always a staple in our house since I was young.  A spoon of white sugar on top.  My mom tucked me in. 

This morning my friend Melinda came to bring me a bagel and visit.  You know her by now.  The dear mom of Danica's friend, Brooke, who also has Chiari.  The first friend who called when she found out about my surgery and said, "How can I help?"  They have been through more loss than I can even speak of here.  They recently had to move several hours away for her husband to find work, but she came here with her three children to stay with her parents and watch Danica last Friday, yesterday and tomorrow.  This morning we sat across from one another soul to soul and there were no pretenses.  We have been taken as low as we can as mothers, as wives, as women.  We have given up everything to grasp the one thing we would give our very lives for.  We can speak freely of bill collectors and repo men and shame and in the same breath praise our good God for the provision of manna day by day by day.  Don't store it up.  Give it away.  It will be there again tomorrow.  It's enough.  I will give you the shirt off my back.  I will give you my last drop of energy.  I will love your daughter as my own.

Since Danica was born I would look into her big brown eyes and say, "I am you and you are me."  Today I looked into my friend's eyes full of tears and felt the very same.  Strip it all away and we are just the same.  There is nothing we can lose that cannot be found in our God.  He is our everything.  "And what do you benefit if you gain the whole world but lose your own soul? Is anything worth more than your soul?"  Matthew 16:26 

Humbled and blessed because all this loss is really a beautiful trade off for the soul work He's doing here.  Nothing is worth more.  Nothing.

(This beautiful song, God of my Everything, sung by Bebo Norman is on repeat today.)

Friday, December 2, 2011

Do you see?

I'm sitting here in bed propped on many pillows and covered with my favorite "story" quilt from home.  I'm looking at the sun glistening off the peaceful lake right outside the floor to ceiling doors and windows to the left of where I rest.  I watch the dancing rays on the simple colors and patterns of the soft rug covering the hardwood floor.  Classic and simple furnishings comfort me and are a present wrapped in the way beautiful space has always been a gift to me.  There are pictures of people I do not know smiling at me.  They have a summer life here, and because they are part of this big household of faith they opened their home to me to heal.  I have wanted this.  I have prayed for this.  I have desperately needed this time and place more than I ever could have imagined.  I see.

If you have been reading this blog from the beginning you know my theology has often brought me to ask many questions to a God I believed in and trusted but still held at bay when it came to His providence and how it worked in tandem with my sin.  I especially questioned Him when it came to the suffering of Danica and my family.  He recently brought me to this passage from John 9:1-3.

As he walked along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus answered, "Neither this man nor his parents sinned; he was born blind so that God's works might be revealed in him.

Four years ago Danica was born through months of intense physical suffering and great loss on many levels.  The verse I would cling to was from Job 42:5, "I have heard of You by the hearing of the ear; but now my eye sees You."

I have literally a hundred amazing stories to tell about my trip to Maryland and surgery and healing.  They all speak directly of a God who is always in the details and thrives in showing His Grace through people.  The morning of my surgery my sweet sister-in-law Amy took me to the hospital to get registered and get my PICC line placed.  I did not feel so much nervousness as I did really dreading the process that leads up to actually being wheeled into the room and getting to the real business of surgery.  If you've been through many surgeries you know that everyone comes in and meets you and chats about certain history and reminds you of the risks and complications that could arise and then has you sign a bunch of forms.  There were two people during this process that blew me away.  First I had to go over and register and show my id and insurance card, etc.  When anyone finds out you are a patient of Dr. Henderson it seems there is a special kind of reverance and care surrounding all the dealings moving forward.  This sweet woman saw a countanance on my face that she instantly recognized as being a "believer."  She said, "I am already praising God with you for what will happen in that operating room today and during your healing."  I see.

When Dr. Henderson came in to speak with us he had his classic blue blazer on and held my hand tightly as he prayed over Dan and I.  He asked for God's guidance of each movement of his hands and each decision he would make during the surgery and then he asked specifically for my healing so I would further be able to glorify God by doing His will in His kingdom. 

Stop.  Read it over again.  This man who would cut open my head and neck and painstakingly move around in my brain stem and spinal cord had just prayed the desire of my heart.  All I have longed for is to be doing God's will and giving Him glory.  I know these heavy burdens are not given lightly.  With them come great responsibility to bear them into something beautiful and eternal.  This is why Dr. Henderson does this work.  I cannot be healed and go back into a life anything like what it once was.  I've SEEN and have to tell about it. 

When I came out of surgery and began to get my bearing in the recovery room all I could say over and over was, "I CAN SEE."  The black floaters I had suffered from for years, particularly in my right eye, but most severely the last months as the pressure in my head had worsened were completely gone.  As I type this now I have no obstruction of my vision at all.  Although I am in considerable pain from the rib harvesting and my large head and neck incision I do not have the paralyzing vice grip in the back of my head.  I do have quite a bit of nerve "damage" from the screws put in my upper skull to hold it in place suring surgery.  I have felt like my head is numb.  I know much of these post surgery pains will take patient healing and rest to make it a true success. 

I am praying that all the faith being made sight will unfold in your life and mine so the power of God can and will be seen in us.

Thank you for all the continued love and prayers for us.  Our family will remain separated for some time so I can best heal.  Please pray for Dan as he is back to work and so very tired.  He is out of paid time off so the flexibility to care for the girls are be here with me is just not there.  Pray for the tender souls of the girls missing me to follow through on many holiday traditions but also being blessed by having the influence and love of others share their own while I am unable.  Please pray for my parents.  They have carried such a load and my mom is very sick today.  A special thanks to my friend, Melinda, who travelled back into town with dear Brooke to watch Danica for a few days.  I LOVE knowing they are together. 

I will be writing more and more as I leave the haze of my meds.  I am not controlling pain well right now, so I plan to work on that over the weekend.  May you have many moments of peace as we follow the star to Bethlehem.  Keep your eyes open and you will SEE. 

Wednesday, November 23, 2011

Rough Night...Better Morning (Another Angie Post)

Monica had a very rough night. She was on heavy pain medication, so she was in and out of consciousness a lot. Dan describes it as haunting, and it's a good description.

Whenever she was awake she described the pain as excruciating. In the middle of the night, she began experiencing numbness in her right arm and leg and a burning sensation in her heels, along with a lot of pressure in her skull. Miserable is an understatement.

This morning, Dr. H came in and said the numbness was symptomatic of spinal fluid build-up, so he performed a lumbar puncture to relieve her pressure. He removed 26 cc's of fluid. The norm is 15. She is feeling much better now that the pressure has been relieved, but she is concerned it could build up again and that they may have to put a shunt in. Dr. H said that barometric pressure can also impact fluid build-up, and Monica is especially sensitive to changes in weather, so that may have been a factor in the pressure.

When I came in the room after Dr. H performed the puncture, he looked over at me and said, "She is such a brave woman." It's at that point I fell apart.

She is.

So very brave.

This morning in pre-dawn darkness I read these words to her:

"For the mountains may depart and the hills be removed,
but my steadfast love shall not depart from you,
and my covenant of peace shall not be removed."
says the LORD, who has compassion on you.
(Isaiah 54:10)

Our Almighty Father, Creator has given her breath, our Savior has brought her new life, and our Holy Spirit is ministering comfort to her. I can see her peacefulness in the midst of struggle. That is evidence of your prayers interceding for her. She is so grateful.

Dan is here now, and Monica is eating her breakfast and drinking coffee and seems more chipper than she did at all yesterday.  I love sitting here watching Dan and Monica interact. It is beautiful.

She is so loved.

Y'all are loving her well, too.

Would you continue to pray? She is desperately asking that this fluid build-up would not happen again. It is scary and overwhelming, but she is resting in the steadfast love of the Lord.

Thank you.

Tuesday, November 22, 2011

Strength for Today... A Post By Her Friend, Angie

Monica had supper delivered to her, and if one can be jealous of hospital food, I might have been a bit jealous of her chicken and rice. She chewed bravely even though it was so much work.

As I sat there and watched her, I couldn't help but think of one of her favorite quotes by Eleanor Roosevelt: "Do the thing you think you cannot do." She is so courageous, doing what she must even though it is hard and painful.

I have sat by her bedside for several hours now and watched her drift in and out of sleep, listened to monitors beep while the IV nonsense drives her crazy, and chatted a bit with her during her more alert moments. Always she tells of God's great faithfulness to her and her family. She tells of how Dr. Henderson has cared for her and quotes to me his prayer before surgery. She rejoices in her "floaties" in her vision disappearing. She whispers of Dan's care for her and of speaking with her girls earlier.

At one point, she laughed. "Did you ever imagine how many surgeries we'd have between the two of us?" It's almost comical. Then we talk of how we really must be kindred souls. But it is more than that. I'm convinced God knew we needed each other to fully understand all the weight each other bears.

She bears her trials well, and I marvel at her resilience. I am so blessed to sit by her side and learn from her even here where the walls seems to close in on you and the light is so harsh and fluorescent.

The stronger meds from surgery have worn off, and she is in a lot of pain today. She struggles to find a comfortable position, but she barely mentions it, only asks for help to sit up or gritting her teeth as she pushes the button to pump more medicine in.

Dan is staying at the hotel tonight to get some much needed rest. It makes me think of Jacob in the Bible, how he worked seven years for Rachel and yet it seemed a short time because his love was so great. They have such a long week ahead of them, and he will bear much of the weight of care. Only his love for her is so deep, I know it is a weight he is willing to bear for her.

She made some progress on her supper and received a visit from another patient here who has encouraged her that it does get better. The nurse came in and got Monica up, and her pain has gotten more intense,  so they've given her some valium, and she is resting comfortably now. I've read some Facebook messages and texts to her, and she is overwhelmed by all of your love and prayers and support.

We are curling up for the night, and it is quiet, or as quiet as a hospital can be with machines whirring and intercoms buzzing and loudspeakers blaring in the hallway. I am so very thankful to be here, to pray over her and ask God for strength for today and bright hope for tomorrow. And I am so very thankful to hear her speak of all of you... your prayers and support and encouragement are bolstering her spirit. 

Maryland, My Maryland...A Dan Post

Monica and I are comforted both in the doctor she has carefully selected and the fact that the surgery is in Maryland. Though the faces in this small hospital are unfamiliar, the surrounding environment is where I spent a few years attending the University of Maryland here at College Park and subsequent employment in the region. We met in nearby Sterling, VA, residing in the area and also rented a home in Gaithersburg, MD, where Danica was born. Though we prefer the more relaxed pace of Northeast Ohio, we still are connected to this area. I think it aids in recovery if one feels comfortable in their surroundings.

Monica is doing well post-op. This morning Dr. Henderson commented the surgery went perfect and seemed very pleased with her progress. She just finished breakfast and could still handle an Asiago bagel from Panera. With the C1/C2 fusion and decompression, the extreme pressure in her head and black "floaties" in her vision disappeared completely. The pain from harvesting a rib is very significant but she is thankful that this new pain is in a new place. Similar to Danica, she is wearing a Vista neck collar which covers the small incision in the back of her neck. She has a small but private room here in Lanham and the recovery wing seems to be mostly empty during this Thanksgiving holiday. Our short term goals are to get all these wires and tubes removed and get back to our hotel by Thursday.

There are key events in your life that help define who you are. Monica surviving multiple surgeries while still always thinking of her friends and family speaks volumes for her loving character. Finding myself alone at times in the waiting room last night made me realize how important our relationship is. Amy(sister in-law) and I were not getting any updates during the surgery and my mind began to wonder a little while reading the Steve Jobs biography. I realized that my wife and I are partners in this world and we are there for each other in good times and in bad times. Specifically, she needed me and depended on me to be there and if I ever questioned my role in life or where I was supposed to be, nothing cemented the fact that I was exactly where I was supposed to be. It was a good feeling.

Maryland seems to be the place where we happen to find ourselves during the most strenous times of our lives. I vividly recall sitting bedside next to my mom in a Southern Maryland hospital watching her one lung barely move due to cancer. This morning while Monica slept I sat bedside watching her lungs move up and down at long intervals due to her deep medically induced slumber. In Rockville we endured several months of unbearable pain during Monica's pregnancy with Danica. We do not think it mere coincidence these events transpired in our "hometown" of Maryland. We believe this is part of a plan to help us cope with our reality. Monica still has two rough days ahead of her as the pain begins to reveal itself but we are comforted in our surroundings and in our hearts. Our past experiences prepared us for this time of suffering. Monica's extremely loving and caring friends will carry us on their shoulders. "We can do all things through Christ who strengthens us."

Saturday, November 19, 2011

Things planned long ago

"O Lord, you are my God;
I will exalt you and praise your name,
for in perfect faithfulness you have done marvelous things,
things planned long ago."  Isaiah 25:1

Tonight I am broken. I cannot breathe or move without the strength and grace of my God. The day seemed frantic and without the togetherness I had imagined but just for a few minutes tonight we sat in the dark as a family with the twinkling tree lights and Dan, who had not showed much emotion today but pushed through what needed to be done, went and got his ipod and played this song sung by Selah for us as a family. Then we listened to it again. " . . .You always give the healing and grace our hearts always hunger for . . .Here in our weakness you find us falling before Your throne  . . .You are the One that we praise.  You are the One we adore."

Each of us are feeling much different emotions but all have the same thread. Me, the momma bird, leaving my baby bird for the longest I ever have. I snuggled her in her little nest tonight and sniffed her hair and kissed her nose and the ache was more than any physical pain I could ever feel. I whispered in her ear, "I am you and you are me." Me, leaving my Laney who said matter of factly after I tucked her in and prayed with her and sobbed, "Mom, I'm used to this. It's my life." Me, looking into my husband's eyes and seeing how weary and frightened he is beneath the brave, strong and loving heart. We hugged. He told me he is making a commitment to me to be "up" even when he feels down because he knows I need that from him to get well.

The PERFECT faithfulness of God shown in marvelous ways this week reminds us who wrote this story. The next weeks and months are not blank pages. These things were all planned long ago. Even your love to us was decided much before He laid it on your heart to pray or give. Tonight we settle into the arms of a God who is ALL. We praise Him. We trust Him. Our hope does not disappoint.

(Thank you so much for praying for us all and especially for safety for our travel to Maryland and for my surgery Monday. I will be at the Doctors Community Hospital at 9am to get a PICC line, 11am I will go back for surgery prep and 1pm is the planned surgery start. He has the operating room scheduled until 6:40pm. Dan or my sister-in-law, Amy, will be updating here and on facebook as they can. I have a stack of thank yous here I desperately want to write and unanswered emails and messages and even un acknowledged great love. To each of you I say, your words and prayers and blessings are needed and appreciated and give comfort and encouragement. We love you.)