Sunday, December 30, 2012


Every year I pick a word. It becomes a daily prayer and a mantra for living. It is my only real effort at a resolution of sorts. I birthed the word for 2012 while I sat bathed in light at the lake house recovering from my brain surgery and fusion. It was POSSIBILITY. Everything in me HAD to believe the impossible really could happen through Him. I collaged a large poster board with pictures and words that spoke to what I was hoping and praying for. It became my desk mat, and I have looked at it literally hundreds of times this year. Every single glance breeds a heart cry. One of the most important elements I included was what is commonly know as The Lord's Prayer. The liturgy of this simple and yes, perfect, prayer has helped tame the wild theology that often found me attempting to craft pleas sounding like they came from the "Valley of Vision" which only pointed more deeply to my gross inadequacy when I approached talking to the God of the universe.  The desperate need for home is also a central theme. I firmly believed healing would begin to come if I could have a nest again. I needed light. I begged for light. Kindness and giving are woven through the images and quotes. I could not accept anything more unless I could find a way to give more. This love needed to flow through me like air.  I needed to receive without shame for my gratitude to become pure. 

The book is about this giving and receiving.  Over and over again it is the impossible things made real for my family and I that are the story needing told.  The pain and suffering are just a backdrop for the amazing love.

I found my word for 2013 in a little store in Hartville I love called One Vintage Lane.  It was this old flashcard resting on a piece of tree trunk with a glass dome over it.  I knew it was my promise for the coming year. 


So many of God's promises are to this end.  Often He has demonstrated restoration in the Bible through material blessing and physical healing.  This is never the Gospel without soul changing work.  We have had a very real sense of all of these things since beginning our new life here several months ago.
January first is like a doomsday for families with chronic health issues.  It is the day our insurance premiums go higher.  It is the day our deductibles reset to zero.  My head swims with the logistics of beginning all this again.  My dad will be driving me to Cleveland Clinic tomorrow to try and squeeze my platelet aggregation study in under this year.  They are notorius for denying claims and requiring payment up front for deductibles not met, so if I wait even one more day it becomes a nightmare.  I have an appointment with Dr. Henderson Monday, February, 4th in Maryland to discuss my odontoid and symptoms.  I will also see the hematologist for follow up to go over all my blood studies and talk about a treatment plan.  These appointments go under a different larger deductible than seeing my GP here or someone in network. 
Because of the astounding love of The Canton Chapter of The Foundation for Community Betterment from their annual fundraiser Rocktoberfest we do not have the pressure of wondering how I will afford to travel to see the specialists involved in my ongoing care.  Following this February trip will quickly be spring appointments for cardiology with Dr. Grubbs in Toledo and genetics with Dr. Tinkle who moved to Chicago.  I am also hoping to try some prolotherapy on my right knee which has been dislocating frequently and causing me a great deal of pain.  Betterment was able to help with our mortgage which frees up personal funds for medical bills, copays and prescriptions.  They helped with gift cards to cover airfare, gas money, hotels and food.  This is part of the tangible restoration I see for sure.  I have noticed a change in my mental, emotional and even physical symptoms since learning of this provision.  This proves to me the toll these years have taken on Dan and I.  It speaks of how pressure removed allows an actual change of being.  Even if only for a short while we have moved from survival to something that looks and feels more like living. 
Of course I have a verse for the new year too.  It's a promise I will cling too. 
"And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself RESTORE, confirm, strengthen, and establish you." I Peter 5:10
Every day brings me closer to the full realization of this truth.  I'm expecting great things. 
Happy New Year to you all.  Pick a word.  Grab on to a promise.  Our Hope remains!

Wednesday, December 26, 2012

10,000 Reasons

Sometimes pictures really do say more than words.

For not giving up on us.
For 10,000 Reasons.
Thanking Him.
Thanking all of you.
Our hearts and our home are overflowing.
Our Hope remains.

Thursday, December 13, 2012

Dear Laney Jayne

Dear Laney Jayne,

Tonight my heart is bursting with love and gratitude for you, my beautiful girl.  You saw it in my eyes when you came home from school, and you faced it head on like you do most everything. 

"Mom, I know you are sick.  Please don't feel like you have to come tonight.  There will be other programs. . . Oh, don't cry.  It's okay.  Really." 

Your fifth grade Christmas extravaganza is happening now.  You've practiced enthusiastically for months.  Your gorgeous voice has been singing the songs over and over here at home.  I hear you in the morning.  I hear you in your sun filled room in the afternoon.  I hear you in the shower. I hear you at night when I'm tucking sissy in, and I come in and fuss for you to try to stop singing.  It's just in your heart.  You have always had a song in your heart.  Despite my increasing social anxiety and inability to physically endure preparing for any kind of event or actually attend it, I wanted to be there.  I want to be there now. 

I am so proud of you.  You have worked so hard at everything you have tried.  You have taken all the responsibility for your heavy school load, extra curricular program and your music.  You are thriving, Delaney.  Even when you come home, and I have already clocked out for the day because of pain, you remain cheerful and helpful and loving to me.  You meet me where I am probably more than any other person in my life.  You never make me feel guilty or manipulate this very difficult situation.  You still love to be with me when I am grumpy or sad.  When I look in your eyes I know I have to keep fighting so I can see what happens next.

You are everything I dreamed you would be.  You are kind.  You are generous.  You are brave.  Oh my, you are are so brave.  You are strong like I wish I could be.  You are wise way beyond your years.  You are funny.  You make me laugh out loud.  You are crazy creative.  You are bright.  I mean like the sun.  You are smart too.  You are tough as nails but have the most tender heart.  It's a perfect mix.  You are grateful.  Ten year old girls aren't supposed to know to be this way.  You are a leader.  You know who you are.  You know who God made you to be.  You are so much more.  You are the most. 

When I look into your piercing blue eyes and try to count the cinnamon sugar on your nose and cheeks and when I kiss you on your head and touch the gold in your hair I still catch my breath.  When I see you first thing in the morning, you are a bubble floating into my day.  When I tuck you in at night, you are a perfect punctuation mark to all the good and bad and in between. When I doubt why God could have put me here.  When I ask Him why He is keeping me here.  He answers with you.

I love you Laney.  There has never been a minute in your life I wasn't carrying the awareness of the extreme treasure you are.  I worry sometimes that you won't know how I feel.  I feel afraid I can't love you well enough because I am such a different kind of mom than most everyone else.  That's why I'm writing this now.  Maybe someday I'll be healthy again and will attend your daughter's Christmas programs.  Maybe I will be sicker or even gone, and you will have to navigate even more life without me physically present.  However it goes, I need you to understand my heart for you. 

It's LOVE.  Simple.  True.  Forever. 


Monday, December 10, 2012

Laughing without fear

Source: via Richgeana on Pinterest

The hematologist called today.  Yes, I know, I'm so behind on writing about it all.  Somehow the details of our trip to Maryland including the wonderful time Dan and I had together and the beautiful Monday we spent at the National Harbor including seeing Curt and Eleanor, the crazy amount of blood they drew and the STAT order for an MRV, MRA and MRI of my brain that took until 8pm last Tuesday, and then the white knuckled, pouring rain, seven hour drive home don't need to be told.  It's today, the almost week later I want to talk about.  And not because God wasn't in every detail of last week.  He was.  It's just how it all made sense in a moment. 

One of the most wonderful things about memorizing Scripture is how the Spirit brings it to mind instantly when you need it.  As Dr. Wang read word for word the radiologist's findings on my brain MRI that were unrelated to the venous structure or any bleeding/clotting disorder I had a shiver.  She finished and said she didn't know what it meant, but she knew it was bad.  I LAUGHED.  I told her I understood.  She urged me to call Dr. Henderson to alert him to the findings immediately even though he was copied on the results.  I promised I would.  We chatted about the blood work still out from her office and the platelet aggregation study she ordered for Georgetown I still need to complete at Cleveland Clinic.  She said I need to come back to discuss treatment when all the results are in.  We hung up. 

My first gut response.

My first thought. 

My first prayer.

"Thank you God.  I trust You."

He brought the above verse to mind.  Has this entire journey brought me to FINALLY respond to my circumstances with strength and dignity?  Am I really not afraid?  Did I really laugh?  If so, it is all worth it.  This isn't in vain.  He really is making me new.  He's given me something so much better than the "life" I dreamed I would lead.  Wait.  Am I just saying this?  Do I really believe this?  Is this a true response or a programmed one? 

Just last night I went through almost six months of clippings I've been saving for my 2013 collage vision board.  I also began collaging key words in my new year journal.  My neck was hurting so badly from just looking down at the angle I needed to see.  My head was going numb.  I lost feeling in my right hand.  I could barely hold the scissors.  I began ripping instead of cutting.  I made categories of areas in my life I need more discipline, more Grace, more nurturing and more growing.  I felt an excitement for what is coming.  It was more than hope.  It was real anticipation.  I see now this ritual of creativity was timed perfectly before today's news. 

Large bony prominence.  Odontoid projecting posteriorly.  Abutting cord at cervical medullary junction. 

Without linking to a bunch of research and explanations from the years I have been immersed in this neurosurgery world I can tell you the findings explain almost everything I have been experiencing.  My symptoms have snowballed over the past couple of months.  I HAVE been frightened by the unknown.  These words give meaning to my suffering. 

Dr. Henderson had late surgery today.  He has more surgery tomorrow.  I don't know when this hero of a man will take a break from life saving to sit a moment and look at my images and respond.  I don't know if he will need new imaging to give a better picture.  My guess is he will want a full view of my spine before we would move forward and a new CT to show bony details.  I don't know if this will need to be here or there.  I don't know how urgent this is except for my severe symptoms which are, of course, my body telling me there is something very wrong. 

I know I have a future.  The answers are already written.  I can laugh WITHOUT FEAR.

Tonight I ask you to pray about all these things but most of all please pray for my Dan.  As we lit the candles tonight, and he led the Advent reading during a week about PEACE, he read these verses from Philippians 4,

"Rejoice in the Lord always. Again I will say, rejoice!

Let your gentleness be known to all men. The Lord is at hand.

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus."

"Yes!  Amen!"  My heart cried out.  No anxiety.  Asking.  Thanking.  PEACE.  Surpassing peace.  Sound mind.  JESUS. 

I could see in his eyes he was not in this same place tonight.  He was wearing the blue Team Danica shirt with the "DA" crossed out and the "MO" written in with permanent marker.  He dug this out of the closet in a show of support for me even though he was devastated.  As I type this he is beside me trying to sleep.  No football.  No chatting.  Just hiding.  He hates this blog.  He hates facebook.  It has grown to represent the fact that we have news.  It is place where I have walked in candor before hundreds of people who still want to know where God is taking us next.  He wants us to have no news for a very long time. 

I could quit.  I could instantly stop being naked like this before you.  I could fiercely protect my privacy and that of my family.  When I have wanted to slip away into being unknown God will spur one of you to write me an email about how our journey is changing you.  One of you will facebook me that you pressed on for more opinions for your child because of our fight for Danica.  I am reminded over and over again by your prayers and longsuffering kindness to us that saying all this out loud is important.  He said so. 

"Has the LORD redeemed you? Then speak out!"  Psalm 107:2

How can I not?

I may wake in a shadow.  I may be crying instead.  I may fall down in weakness and be very afraid.  I will tell you about it too, but I will always end up at the God who stays the same through it all.  This is real.  This is my heart.  This is my life. 

Our Hope remains!