Restore

 

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. 

RESTORE.

 

 

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!







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.

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www.onetruemedia.com

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. 

Mom

Laughing without fear

Source: etsy.com 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!

After Annunciation

 

This is the irrational season
When love blooms bright and wild.
Had Mary been filled with reason
There’d been no room for the child.

Madeleine L’Engle

 

 

After the long night with no rest and Danica sick all over I stumble into the living room early this morning to find this miracle blossom open.  It started out just a clump of stinky flesh buried in a pot a few weeks ago.  We watched and waited.  The shoot grew so tall.  Just yesterday we talked about how pregnant she was.  I tied her up with a stick and some twine.  Birth pangs around the corner in the dark while I laid here crying out for saving.  I never should have looked away. 

 

God, help me sit and really watch this Advent season lest I miss something BIG like the birth of the Savior of the world.  My Savior.

A bold prayer for tonight. Mercy. Grace. Please.

Source: gatherlove.tumblr.com via Amy on Pinterest

Most of you would be more entertained to read the MANY drafts I've written I don't post here.  I'm finding increasingly what I type doesn't make the cut.  Some I'm saving for the day I'm brave enough to speak ALL the truth and the rest is my reality slanted by the amount of pain I'm in so it doesn't come across as speaking "life."  I know people tire of lament.   Some entries just paint me in a horrible light like the one I wrote about our Christmas decorating fiasco on Saturday.  Yes, I ended up SCREAMING and threatening to throw the tree out in the front yard. Dan and the girls didn't flinch.  Nothing about it was peace or joy or goodwill, but we will laugh about it for years I'm sure.  I quit reading most blogs months and months ago because I felt like the influx of "diarrhea of thought" was too much for me to sort through.  I've tried not to ever make this a place for my "waste".  Many of you who read here also know I use facebook frequently.  It is my way of communicating with not only my "real" friends and family but also my extended Chiari and EDS family.  I am alone and in bed much of each day, and this little piece of technology helps me feel connected.  I am not generally a phone talker.  It exhausts me and makes a ringing in my ears.  I feel the need to be "okay" for people when I'm not really.  This is a double edged sword that cuts deep.  I haven't even had my cell phone on for days.  I love hand written letters but find the response to them is increasingly rare.  Lengthy individual emails seem to be the exception lately as well.  The need to let large groups of people who are praying for us and supporting us know important health updates has slowly become the sole purpose of "Team Danica."  I like this for now.  Telling our story is still important, and it will come in time with some perspective.  Until then, I hope you will not interpret my intermittent notes here as a sign I am completely slipping away but rather resting and refocusing. 

I am not well.  Living in our new home has given me much relief from particularly the environmental reactions I was having in the basement.  I do breathe easier here.  The laminate floors are probably the biggest help.  Without the dust and mold in the carpet I have had not just less pulmonary issues but also less skin mast cell issues.  Delaney was asked how I am different since we moved, and her first answer was I'm not always saying "What's that smell?????"   Being more in control of my environment helps although I continue to be very sensitive.  When the heat comes on I still smell the basement here.  Dan cleaned our bathroom Sunday, and the residual smell and exposure to chemicals bothered me for hours.  Any outing to the store or someone else's home will also make me sicker.  Saturday I walked passed the cinnamon pine cones outside a store and seriously reacted.  I am not even sure where a block of time went while inside the store alone.  This is frightening for my family and I.  I am also having neurological symptoms again.  I am twitching.  I am twitching a lot.  The pressure in my head is the worst it has been since before my decompression and fusion.  I have lost bladder control.  I feel like something is pushing on my spinal cord.  My hands have been going numb.  I am in so much all over pain.  Oh, and my heart hurts and is racing even mre than it was.  The worst part is I truly don't want to move to fix any of it.  This is not to say I'm giving up.  It's more to say, I'm too tired right now.  It hurts too much.  I don't know how to help myself anymore.

I was to see Dr. Garcia, the pectus surgeon in Cincinnati, on Thursday and the new geneticist in Cincinnati, Dr. Neilsen, on Friday of this week.  I have cancelled both appointments.  After the Cleveland Clinic doctor's complete reservations about the Nuss procedure on someone my age with EDS and referral to another surgeon there and confirming Dr. Tinkle will finally begin seeing patients in Chicago in the next few months, I could not justify the unpaid time off for Dan, the cost of the trip or the precious energy it would take.  Instead Dan and I will leave Sunday for a Tuesday morning appointment in Maryland with a hematologist I was referred to by my neurosurgeon.  This seems like the most important next step since I could not have any new surgery without exploring bleeding issues since my emergency hematoma surgery.  I can only make the next step.  Because our out of network deductible is so high I need to do this in 2012.  I really need to see Dr. Henderson while we are there.  As of now I don't have an appointment.  I know from my private facebook boards he is swamped with surgeries and patients from all over like usual.  These people have waited for so long to see "the wizard."  Please could you pray if I am have a little time with him next week God will work it out and if not I would be able to physically move through my symptoms until I can be scanned and have him evaluate.  If it is not until next year then that is what will need to happen. 

Tonight I looked at Dan through tears and asked him if quitting was an option.  Stop the meds.  Stop the appointments.  Stop the paperwork.  Just see what happens.  On days like today I feel like none of it is helping anyways.  He reminded me I am alive because of my surgeries.  He reminded me I cannot sleep without those drugs. I am better than I was.  I have to endure.  I have to end back up at Hope. 

I don't have to raise awareness.  I don't have to write a blog.  I don't have to defend my disability.  I don't have to be hurting myself to prove I'm alive.  What if we didn't have one another?  What if we didn't have a safe place to say how much this really sucks?  What if this really was the end?  How do people not believe there is more? 

I'm asking you to pray for me tonight.  Don't pray for my long future of pain or even for my tomorrow.  I'm begging for prayer to get through tonight.  I need the comfort of Christ.  I need peace.  I need rest.  I need mercy.  I need Grace.  My family needs all this too.  Just a reprieve.  Please God. 

Darkness into light

This is what God the LORD says-he who created the heavens and stretched them out, who spread out the earth and all that comes out of it, who gives breath to its people, and life to those who walk on it: "I, the LORD, have called you in righteousness; I will take hold of your hand. I will keep you and will make you to be a covenant for the people and a light for the Gentiles, to open eyes that are blind, to free captives from prison and to release from the dungeon those who sit in darkness . . . I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them."  Isaiah 42:5-7, 16

I'm in bed in my new room curled under my heated throw with my sweet dog companion adding an added burst of warmth on my feet.  It's the second day of full sun in this place I now call home.  I study it like a crazy person.  From morning until afternoon I keep my camera close and try to learn the way the light changes as the great orb travels from east to west over our shelter.  The freedom from darkness is like an IV bag of a magic drug I have desperately needed for well over a year now.  As it courses through my veins I taste it and feel it first.  I have to close my eyes because the brightness and the relief burns in the good way before the calm comes.  I knew in my heart of hearts this would make me suddenly better; not well but oh so much better.  Today my joints shout out all day long.  My muscles twitch.  I see black floaties as I type.  The pressure in my head is moderate, but I can feel loose vertebrae in my lower cervical area and entire back slipping and pushing on the cord of life.  My head goes numb.  My fingers too.  I know for sure there is something neurological going on, and this time I'm taking trying to ignore it will be short.  My chest has been hurting more too.  When my hypermobility is bad, the scary heart symptoms seem worse too and the stabbing takes my breath away.  On a day like this in the basement I would have been stuck on an incessantly off key note of pain.  Instead I am distracted here by the simplest sights and sounds I will never take for granted again.  I am able to release some of my constant pain back into the space between the sun and the earth.  My afflictions are eclipsed by this glory.  His glory. 

A stack of poetry books are beside me and my Bible.  I am able to read again.  I am able to pray something different here.  I chew over His words.  I can scarcely breathe when I see for sure the promises I screamed in doubt and fear to Him are being revealed clearly as true once more.  They were always true, but it was such a stretch to keep believing for so long in the dark.  I finally admit to myself it was at the lake house recovering from my brain surgery and cervical fusion I last experienced this close communion with God.  It was almost a year ago now that I had this kind of peace and hope.  For just a moment it causes me to question if my circumstances have been the foundation of my faith.  He whispers comfort to me on another shaft of brightness.  There is no need for deep theology in this cathedral He provided.  It's simple.  He rescued me.  He delights in giving good things.  He called me from darkness into light.  He IS the light.  Oh How He loves me.

Dan and I are suffering an intense gratitude there are no words for.  We thought we had been the most thankful before.  Somehow it was never as deep as this.  Just around the corner of all this fulfilled hope and desire granted is the lie we shouldn't be allowed to have something this nice or peaceful or secure.  We've seen too much on the other side.  It's like survivior's guilt of the worst kind.  We still wake from our homeless nightmares.  We walk around this place in disbelief we made it here and choke on a strange dread it won't last when we should be tasting more fully the gift of today.  Dan will say out of the blue, "STOP.  Girls, we are really here!  Look at us!"  We cry at the silliest things.  The fruits of the Spirit flourish here in the light too.  We are almost startled at how much kinder and more patient we all are here.  Good things will grow here.  We can feel our hearts pushing out of the dormant place we waited in for so long reaching up through the cold dark earth to begin a shoot we know will really bloom. 

A year ago I could not get out of bed.  Literally.  My brain stem was in such jeopardy I did not know if I would make it until my surgery scheduled for November 21st.  People ask me if the operations were worth it.  They see my continued pain and wonder.  As I move through my days now there are a dozen simple tasks I can push through for myself or my family and friends I simply could not live before without the stabilization I was given.  The reality of Ehlers Danlos and its progression and the need for further intervention cannot be dismissed.  Every hour is full of trading even basic life for more pain and injury.  I'm ever learning.  My family is learning.  We walk a balancing act of grabbing life and drawing back because the good hurts people like me.  This home is so important to prolonging what is the inevitable.  Every stair I don't have to climb is adding life to my knees and hips.  Every breath of fresher air is making me less reactive to the world that sabatoges me without warning.  Every particle of light is fighting mast cells and mold and the demon of depression . . .

It's Monday morning now, and it's been days since I began this post.  We had a beautiful weekend together as a family.  Our hearts are full.  Our joy is real.  Our peace is sure.  Your love and prayers have carried us and our merciful God has given us so much more than enough.  This week includes our first family counseling session tonight to continue the real work of heart healing from all we've endured and learn better ways to move forward and be the family God wants us to be.  I think we are all a little scared and excited to start this dialogue.  Tomorrow night Delaney will play her flute in her first band concert at her school.  We will celebrate the loving place God has always provided for her to learn and grow and the gifts He's given her.  Friday Dan will take more time off work and drive me to meet with the Cleveland Clinic pectus surgeon.  We cautiously move forward with seeking treatment closer to home in the coming year.

Thank you for sharing in our excitement and praise as we settle in our new home.  Thank you for indulging me as I share too much about what the light is like in this place.  It is like I'm seeing for the first time.  Everything is wonderful.  Thank you for continuing to pray for us.  Our Hope remains. 

(I am quietly removing our "donate" button today.  As I read my Bible this weekend I was reminded through the story of Bartimaeus how our "begging" has been one of the most humbling parts of this journey but also the way our God has tested our dependence on Him.  Through your own stories I know it has also tested your faith as you have given sometimes more than you really could afford to.  There is a point in the story in Luke where someone from the crowd shouts out to the blind man, "Be quiet, beggar!"  There are some family and friends who have surely shouted this our way.  Bartimaeus continues to cry out to Jesus to have mercy on him.  He receives his physical sight that day and many who saw this miracle also believed and were made spiritually well.  When I have focused on our material needs and the gifts and provision in my writing I hope you have always known it is to point to the Great Provider and how He faithfully gives all things to us.  I pray it has pointed to Grace.  We move forward not knowing how the next wave of our needs will be met but feel confident this place has more than served it purpose.  We thank each of you for making such a difference in our lives.  You have been God's hands to us.  We are ever grateful.)