Wednesday, November 28, 2012

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.

Tuesday, November 27, 2012

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

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. 

Monday, November 12, 2012

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.)

Monday, November 5, 2012

Why I wake early

I don't really understand why my body is waking up at 4 am since we moved home.  I'm sure it does have something to do with changing from a pitch black bedroom cave with literally no light to sleeping in a space with three large windows and all kinds of beautiful life sounds from just outside them.  My entire system is trying to restore some rhythm to rest. More than the obvious spacial and physiological reasons I believe it has something to do with my long held pleasure of sneaking out of bed to be alone in the sacred moments before the rest of the world wakes.  I love reading and writing as I watch the gradual glow of the day appear.  I love holding the heavy mug of warmth in my hand, bowing head, closing eyes and making thanks while I dare to ask for more.  I had completely ended this ritual during the time living in the basement.  I dreaded getting out of bed.  I some days would never turn to His face.  It was too dark.  All the places you would easily look and listen for Him seemed shut off from me there.  I had no grandiose expectations about how things would change when we moved here just over a weeks ago.  I was sure the process of joy and healing would be slow and maybe even need some coaxing.  Instead I have been surprised by God over and over again in big and small ways how much of a difference this is already making for my family and I. 

Yes,  We are home.  We begged God for this.  You pleaded with us too.  Over and over we got on our knees and cried out for a place and provision to pay for it.  Have you ever been caught up in the marrow of exceeding, abundant Life? Have you ever been so aware of how little you deserve something and how much sweeter it becomes because it is pure Grace?  This house of wood and stone is just a shelter.  Dan and I both alternate between crying over the silliest things and shouting out to the girls randoom gratefulness and disbelief we made it here and also a true sense of how this place is on borrow.  We remind one another, "Don't worry but don't clutch either.  Just rest." 

Today I am thirty-seven years old.  I see God's plan for me unfolding just as it should.  I am surrounded by scandalous love.  I sit on the brink of telling the stories that now ooze from my pores.  The illustrations stay the same as the words wind from dark to light.  There is a home.  There is always a home.  There is a table of Grace.  I am never worthy, but I am always welcome.  I invite everyone I can to come and taste too.  We offer thanks over and over and talk of impossible things made suddenly real.  We gather around miracles born of love.  We drink cups that never run out of kindness.  The bread is always peace.  My meal is specially seasoned with a bitter taste of pain that becomes so familiar I begin to be grateful for it too. 

The house begins to stir, and my Danica is the first to come out and climb into my lap under blankets.  Her head smells like life.  Her soft warm body charges a special battery I need to get through my day.  She always tells me my snuffing in and out as I kiss her hair over and over smells like coffee.  She acts like it maybe bothers her, but I know it really comforts her.  She will come back to these moments and this smell and how it all felt as she grows.  This is home.

God, Thank you for this day.  Help us love it fully.  Thank you for this beautiful life.  Help us love You more.  Amen.