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!

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. 

Friday, October 12, 2012

A LittleBirdie told me . . .

When I began writing here well over two years ago the sole intent was to create a place where I could update close family and friends on our journey.  I never imagined people from near and far would bookmark and follow and support us the way they have.  Over this time I have received many emails asking why I do not monetize my blog, link to ads of products I use or believe in or promote other blogs here increasing my own "traffic".  The answer is simple.  I have always wanted this to stay a quiet place where candor was the rule, and I could feebly attempt to point to the Hope that remains by Him and through Him and for Him.

I have prayerfully been considering some Team Danica changes.  I believe God is making the timing clearer to me through recent answers to prayer for our family, our continued struggle as far as health and long term finances but most of all because I have been moved by the Spirit to share more than I can personally give with others. 

The first change I will make is to remove the "DONATE" button on this blog at the end of October.  In many ways nothing has changed about how in need we are and how this financial strain will not really end any time soon.  Digging out of the humongous hole of debt seems impossible.  Truly.  Perhaps one of the biggest surprises during all this time is those of you who have never seen our family as a "lost cause" but instead have been God's hands of providing exactly what we needed to make it through over and over again.  Never for a moment doubt what a difference you have made and how you have changed our lives. 

Some of you have asked and many of you are wondering how in the world are we going to be able to afford the rental payment on our new home.  Remember when I asked you to pray about my Social Security Disability application?  I think it was one of the hardest posts I've ever had to write, and I've wanted to go delete it more than once.  I thought if God answered I would be walking around with a scarlet letter "D" around my neck.  The truth is He answered "YES" in record time, and I am not ashamed but instead so grateful I have wanted to shout it from the rooftops.  He was making the way of escape all along.  My Disability will pay the payment on our home and utilities.  Our finances will stay much the same as far as Dan's income and our other expenses.  There is no windfall.  Once again, just what we need.  The hundreds and thousands of dollars of new bills are still coming in, and I file them neatly with the years of others, and we go out to gather manna for today.

The other questions in recent days are, "What do you need for the house?" and "How can we help you with the move?"  Today we found out we will not get the keys tomorrow like we thought but rather on Monday.  This creates a push for Dan and my dad to get in there Monday night after Dan gets off work and cut strips of the carpet and remove all of it and the pad as well as the tack strips.  If you are able and somewhat handy and would like to offer to help with this chore please contact me on facebook or comment here.  The installation of the laminate floors is already set for Wednesday and Thursday, and my dad teaches a class on Tuesday night, so really Monday is the only night to get it done.  One of the biggest concerns with this home was the flooring.  The carpet was original and would definitely make me sick.  Dear parents of a childhood friend felt led to help with this expense.  The remaining cost has been donated by a local business.  Without this love we would have had to wait until we could save enough money or risk me moving to my new "safe" house and not being able to tolerate it or feel even a little healthier there. 

New friends we met through Betterment asked us, "What do you need or want?"  Oh my, please, do I dare ask for something as big as a dresser or a chest of drawers?  Heather and I have not been able to go shopping yet, but I tell you the thought of not having my clothes in baskets and shoved on shelves but having real drawers makes me giddy.  I have tried some older thrift dressers and like most everything used they have had a smell that cannot be removed and makes me very ill within minutes of being in the same room with the piece of furniture.  This is a huge gift! 

We have some painting to do, we need to purchase a washer and dryer, preferably front loading ones we can put on pedestals so I could use them. We need a sofa, something we need to buy because used upholstery is the toughest when it comes to my allergic reactions.  Other than those main things the rest will fill in over time.  Honestly, if all we had were four nice sleeping bags I think we would be tickled.  We are so grateful for the joy and excitement you all feel for us and your desire to be a part of making this house a true home for us.  Fingers crossed we will actually move in the weekend of the 27th.  Danica and I both have important appointments in Cincinnati earlier that week, so we are really hoping it will be a double celebration for our family. 

The second change I plan to make here on the blog is to hire someone to clean up the broken tags and links, organize old posts so they are more navigable and backup our story for a more permanent site change down the road as well as redesign the look while taking this to the real URL and not using Blogger as the publisher.  (If you have a suggestion of someone good to work with please send me a note with their information.)  I'm thinking spring.  It would stay a place for personal reflection, but I will also begin sharing the stories of others who touch our life in some way who need prayer, encouragement, out pouring of love and yes, even financial support.  We have long believed great love does translate to miracles.  I hope this is a legacy our family will pursue even in the midst of continued suffering. 

This brings me to the Little Birdie.  God has put the Marx family, friends of friends, on my heart hourly this week.  Cat keeps a painfully real blog about the loss and grief of losing their son Owen and now a new pregnancy with a grim diganosis.  I will not in any way try to share what is their own story but instead ask you take the time to read at least her most recent post.  After you have sat with her words then please circle back to the Little Birdie plea for this family.  I've been following this local website since the beginning and am truly inspired by the way they use social media and people telling people to meet needs. 

There is great need all around us.  I am sometimes consumed by the heart God has given me to DO something to encourage those who are connected to us who are hurting.  Yesterday as I made a meal for my dear EDS friend Melinda who is recovering from fusion, I could feel the emotion and prayer and love and sacrifice mixing in with the food.  I've blogged about her daughter Brooke, Danica's Chiari friend, her family and our friendship several times before.  In recent days it is like I carry Melinda's heart right on my sleeve.  I drove on the interstate for the first time in a year out to her house across town.  I looked into her tired eyes and the reflection of myself was plain to see.  We have walked such similar roads.  When I ask her what they might need, and she first says everything is okay, I know she is stalling to tell me the real truth.  I know it is gas money for Tim to get to work over an hour away for a twelve hour shift and then drive over an hour home to try to do all the things Melinda cannot.  I know the checking account does not have enough for the prescriptions and trips back and forth the Cincinnati and fall clothes for their three growing children.  I know they are probably selling on Craigslist anything even remotely of value they might have left to try to keep the lights on.  These are things Dan and I have lived.  We have been hungry and not told anyone we could not afford a gallon of milk.  I have gone without my medication to keep our lights on.  Dan actually called in to work once because it was the day before payday, and he had no gas.  This is not financial irresponsibility.  This is the very real result of hard working people who lost mothers who worked and contributed from day one and then were not able.  Are not able.  This is the devastation of children being diagnosed with a disorder that required special surgeries far from our homes and continued treatment and monitoring.  This is days and weeks turning into months and years of medical collections and no end in sight.  Ever. 

They are not a "lost cause" anymore than we have been.  They are desperately clinging to the faithfulness of God and doing the next hard thing.  I would give Melinda the shirt off my back.  I would not eat so she could.  I would go without pain relief so she could feel just a little better.  I lift her heavy heart with such weak hands.  I can't do this on my own, but He is able. 

The last thing I ever wanted this place to be is didactic.  Still, today, I encourage you to look around at someone touching your life who is in need.  Can you pray for them?  Could you encourage them with words?  Perhaps you are able to meet a tangible need that literally gives them the hope to move on.  Never underestimate these things.  Look for opportunities.  If your life is busy and self absorbed set a day of the week aside for intentional kindness.  Drops make an ocean.  Be God's hands and feet.  The joy of intentional giving will overwhelm you, and you may be the most changed of all.

An artist I love has a little hardbound journal titled, One Good Deed a Day.  I have a new copy here and would like to give it away to someone who needs a little push in beginning a kindness journey.  Please leave a comment here or on the facebook link telling me a little good deed you have been called to that has just not quite come to fruition.  I won't be "judging" for a winner this time (way too stressful!), but I will randomly choose from the comments on Sunday night and the sweet journal will be on the way to the winner on Monday.

Now wasn't it refreshing to read an entire post without one mention of my health status or pain?  Love you all.  Make it a great Friday. 

Our Hope remains!

Thursday, October 4, 2012

Good news and bad news

I feel like my posts of late are very informational and not really expressing much of my heart.  I have been writing more privately again, and I have also experienced a stronger calling to write with the intent of publishing.  The time and energy this takes causes me to pull back here.  Still, I want to share with all of you the next steps on the journey you have so faithfully walked with us for so long. 

The good news . . . no, the GREAT news, is our house closed today!  I will provide all the details on this in a forthcoming post, but won't you give a big praise shout out to an awesome God who has provided us this huge answer to many tears and prayers?  On my way home from the doctor this morning I was awed by the sun filtering through the breathtaking colors of freshly turned leaves.  I drove up to the house and parked.  Even though it was only hours until the bank would accept funds and transfer ownership I just had to pinch myself to even believe this could be happening.  I tried to picture life there.  Tears fell freely down my cheeks as I closed my eyes to imagine the rays of light I would become intimately acquainted with falling across our bed, in the kitchen, in the foyer or the living room.   So many things about having our own home . . . having this home will make very hard things easier, but there is nothing I look forward to more than living in the light!

The bad news is I am really not well.  In big and small ways I am suffering, and I just don't know how to move through it.  After all this time I still find myself at an utter stand still in the swirling of pain and progressive symptoms and new diagnoses mixed with old thorns in my flesh.  The overlapping of so many conditions make finding an interdisciplinary approach to my health almost impossible.  My endometriosis is an example of this.

I have suffered since puberty with pelvic pain and gynecological issues.  I had several surgeries to remove endometriosis in my twenties and in February, 2009 I had my first surgery with dear Dr. Romero.  Fast forward to summer, 2010, when I wrote this:

"I have a long history of endometriosis, pelvic pain, heavy bleeding, cysts, trips to the ER, surgeries, etc. related to my female organs. Our lives have been interrupted over and over by these issues. One of the first major incidents after I met Dan was on the way back from Aruba where we had honeymooned. I had begun having pelvic pain the last day or so of the trip. On the ascent the pressure from the plane burst a cyst. The bloody and embarrasing scene that followed stays etched in my mind. The stewardess gave me some big granny panties to borrow and tried to observe universal precautions and clean up my seat and the bathroom. They put me in the front seat, and when we landed in Atlanta an ambulance rushed to the tarmac to take me to the hospital. Poor Dan was dazed and confused. We missed our connecting flight back to Dulles. I remember him taking pictures of me on his cell phone and the horror of seeing a gunshot victim they wheeled past me while I lay in the hall at Grady Memorial. For better or worse began early in our marriage.

I have so many other stories like this. One Dan likes to tell is how the day after I had a laparoscopy he convinced me to get out of bed, still bleeding heavily and in excrutiating pain from the gases leaving my body through my shoulders, and go out to lunch and car shopping. I sat at Carmax for hours in quiet agony and once Dan had bought a new car I promptly had him take me to the hospital in Leesburg because I was sure I was having a heart attack. He learned that day not to push me when things are bad. He knows I don't get in bed unless I absolutely have to. We have missed countless events, cancelled many plans, ran out of stores or restaurants with me bleeding, and I have curled up in bed suffering many days of our life together. Every time this happens Dan retreats into a strange angry place. I know deep down he is not mad at me. He is just so sad I am hurting again. I don't always take it this way. I am sensitive and cry and make things worse. I ask him what is wrong when it's obvious. He retreats further.

This past Monday I went back to see my GYN. After almost three weeks of continuous bleeding I began having horrible pelvic pain and could feel a large lump. Right before our Iowa trip in May I had the same thing, and Dr. Romero told me we needed to do a hysterectomy. I took 20 days of antibiotic and figured I would have to wait until next year sometime--AFTER Danica's surgery and recovery. Monday he made it very clear the surgery cannot wait. I need to have my uterus out NOW. I began the antibiotic and by Wednesday my right flank was hurting me so badly. Dr. Romero sent me to the hospital, and they found a kidney infection in addition to the uterine infection. So, I am on doxycycline and cipro to clear up the infections. My hysterectomy is scheduled at Mercy on Tuesday, August 31st."

During my hysterectomy Dr. Romero saw and took many photos of this crazy disease infiltrating my bowels.  He knew this was beyond his level of expertise and closed me up.  I had five weeks to try to heal before heading to Cincinnati for Danica's decompression and fusion.  I remember bringing her back here in the wheelchair and us living upstairs with my parents.  I remember the crazy pain and physical fights with Danica to keep her from ruining her fusion as she thrashed.  I remember the unbearable knifing pain in my bowels.  I would be doubled over and crying by the end of each day.  In January, 2011, I began seeking treatment at Cleveland Clinic and had surgery in March, 2011 on my bowels.  Between my hysterectomy and my bowel surgery I tried a recommended therapy of Lupron shots.  At the time I was suffering from many of my Ehlers Danlos and Chiari symptoms, but I did not have a diagnosis.  I did know instantly the shots were going to ruin me.  My joints and connective tissue hurt more than they ever had.  I felt like every part of my body was falling apart.  It's only in the past year I have learned the strong connection between EDS and endometriosis and just in the last weeks I have come to understand any treatment that completely stops all my hormones may truly help control the endo from growing and spreading, but it also saps every bit of collagen I might have or be making and send me into a spiral of increased pain and disability. 

I am also learning my slow wound healing, the large hematoma forming following the first surgery in early September to remove an abdominal ednometrioma and overall horrible response to pain treatment is also due to comorbid conditions related to my EDS.  Today I sat in my surgeon's office, and I heard him say the same things again.  He needs to refer me.  I really need Lupron, but it may do more harm than good.  The CT they took before the surgery for the hematoma showed a nodule and surrounding static on the left side where I am now having the most intense pain but also new growth on the right side.  Actually, it was so new it had not shown on the CT several weeks prior.  This is what happens.  If you go in to remove a large mass of disease that has infiltrated an organ or abdominal tissue the cells you can't get scatter and find a new place to settle in.  Have I mentioned how insidious and ugly this is? 

I am exhausted.  Dan worked all day, and swooped home just in time to take Danica to my brother Mirel's wedding rehearsal, because she will be a flower girl tomorrow night.  None of us made it to the dinner tonight.  He brought her home, so I could get her in bed, and then he headed back out to the grocery store.  In the mean time I subluxed my toe just walking.  It's swollen and literally the bone is sticking out of the back.  (I hate EDS.)  I tried to carry laundry up the stairs to help Dan, because he does everything.  My gut feels even more busted.  I cried moving clothes from the washer to the dryer.  It's back breaking.  I force myself, because I need to prove something.  Dan came home.  I wanted to talk about all these decisions facing me with my health.  He wanted to talk about timelines for moving.  I want to be excited about the house, but I can't.  I just hurt too much.  I lashed out.  We were on completely different pages.  I just need to get through tomorrow.  This goes over his head completely.  I go in Laney's room to tuck her and pray.  She prayed for me like she really sees me.  I don't know why this surprises me when it happens, because I know her heart for me is real even though she has to hide it to cope in her ten year old world.  I cried some more.  I came out and Dan was folding towels.  I wanted to apologize but now he has disappeared.  Saying you're sorry only means something if you can change it.  I can't.  The mean, yes.  The frustrated, soul sapping suffering I wear like skin, no.

Will you please pray for our marriage and family and my body tonight?  I need great wisdom and strength to find the right team of doctors to help me with these latest challenges.  Dan needs grace to move through his days and nights as a caregiver to a very sick woman and also the one who does everything day to day for our family.  Please pray for my Laney's heart and Danica's spirit.  Please pray we will have the courage to KEEP GOING

Our hope remains!

Sunday, September 30, 2012

Greater and more beautiful love

"To feel the love of people whom we love is a fire that feeds our life. But to feel the affection that comes from those whom we do not know, from those unknown to us, who are watching over our sleep and solitude, over our dangers and our weaknesses — that is something still greater and more beautiful because it widens out the boundaries of our being, and unites all living things."  Pablo Neruda, Childhood and Poetry

I am trying to piece together some kind of update since my post several weeks ago.  It seems like so much time has passed and way too much stuff.  I am truly not feeling well or healing from my surgeries like I had hoped,  I have needed to been quiet and still.  I have been in a dark place.  I know I've taken you there before, but I have wearied of living and telling this story of suffering and feel you must be exhausted from it too. 

Through miraculous God given strength and the wonders of modern chemistry I was determined to attend The Canton Chapter of the Foundation for Community Betterment's fifth annual Rocktoberfest celebration last night with my greatest supporter of all, my Dan.  I've written many times before about this amazing organization and very special group of people.  THIS VIDEO (click to link) was created by Len Cooper.  He came to our home and patiently interviewed me for over an hour about our story, and, although much of my rambling needed to be edited, including how important faith has been in this journey, it is a beautiful gift to hear in my own voice how much God has loved us through so many of you. 

Tonight I just want to say "thank you."  Dan and I were both overwhelmed by the support last night.  We felt alive for a few hours.  We felt like we might be able to keep moving.  We felt widened and united by your great and beautiful love.  Our hope remains! 

(Thank you to Christina Adam of Grace Designs Photography who gets credit for all the "good" photos included in the video. She will ever be our life photographer and friend.  Also, please forgive my brain fog moment when I say the cerebellum is at the base of the spinal cord instead of the brain.  Educating about Chiari and EDS will always be a life mission, and I want to make sure the facts are straight!)

Friday, September 21, 2012

Past our limits

Sometimes your body and mind and spirit are pushed so far past your limits you feel you will break.  You actually want to break.  You want any kind of release from the insane pressure that for some reason refuses to crush you no matter how hard you beg.  This tension is perhaps one of the most unbearable kinds of hurt possible.

A week ago I was in this kind of pain.  I was not recovering well from the surgery I had 11 days before to remove an abdominal mass.  I guess I really knew something was wrong right away.  When I shared the gruesome picture of my bruising here on the blog it was a cry for help.  The crazy thing is "normal" recovery Monica would have been sneaking out of bed to clean something or organize something.  I would decide I was well enough because I had to be.  This Monica could barely make it to the bathroom and back.  I could not lay down in Danica's bed to tuck her in without yelling out loud when I moved.  I spilled a drink behind my nightstand and would not or could not do a thing about it.  If you know me at all you know this is bad.  Maybe the worst I've ever been.  I stopped caring.  My pain had maybe for the first time in my life completely ruled out my OCD. 

In desperation I called my general practitioner on Friday to see if just maybe I had a bladder infection making things worse.  My surgeon is out of the office on Friday, and I had an appointment scheduled for the coming Monday.  My dear doctor who has walked through so much with me for so long and has championed me on days when I could not fight for my own health reminded me the reasons why could not really trust this self diagnosis, especially after a big surgery.  Still, I refused to call anyone to come and drive me to the doctor to test my urine and have her take a peek at my belly.  Delaney was having a friend over.  I was trying to pull myself together so I wouldn't embarrass her.  The truth is I was barely upright, but all the same things kept going through my head.  "You're making everyone's life so difficult.  Dan can't take off any more unpaid days.  Your parents are exhausted.  Danica is so tired and emotional.  Delaney deserves to finally have someone over without the attention being on her sick mom or sister.  They'll just send you to the ER and find nothing.  You need to just stay down and let this heal.  You are a waste.  This is a waste . . . God, make it go away.  Make this stop.  Please, just crush me."


My dad got home at four o'clock.  I was crying.  I had to go.  We took Danica with us and she fell asleep on the way.  My mom took Delaney and her friend out to eat.  I tried to call Dan.  When my doctor saw me she knew.  This was not "Monica, I live at a five every day on a pain scale of one to ten."  I was in agony.  The thing sticking out of my belly was really hard, warm to the touch and so painful I wanted to die.  (No, I don't need to be on a watch list.  It's okay to say that out loud when it's true.)  She called Dr. Romero.  They coordinated my hospital admission.  Dear Dr. Romero left his birthday celebration with his family to drive down to Mercy on a rainy Friday night and pour over my CT with the radiologist.  It wasn't good.  I had a very large "thing" between the skin and the fascia.  This was completely different than the mass seen in the ER two weeks before he removed during surgery.  He told us it could be infection or a hematoma or something else entirely but we would try to aspirate it on Saturday morning.  Dan left to come home to our girls and try to rest.  I was alone in the hospital room with a dilaudid pump and all the terrors of so many nights alone while I was pregnant with Danica.  My arms were both covered in tracks from the IV tries.  Ten times in two weeks they had poked me for three successful IVs.  The one they finally got was a 22mm in a vein on my thumb bone.  This will probably not mean much to most of you.  It shouldn't.  But if it does then you know enduring just this is enough to ask of someone. 


Morning came.  Dan was back.  Dr. Romero was back and the morning radiologist had reviewed my scan from the night before.  He did not believe an aspiration was advisable due to the size.  They needed to do surgery.  Dr. Romero had the operating room reserved for around noon.  When they took me down I started to freak out.  On a "normal" surgery day the lights are all on, there are nurses and anesthesia bustling around and every bay is full.  Dan and I were taken into a mostly dark and completely empty surgery waiting area.  There was NO ONE.  The anesthesiologist came out, and I went through my history AGAIN.  I'm not an easy patient.  Yes, I've had problems with anesthesia.  My body chews through medicine.  I usually have a PIC line.  I am almost impossible to intubate.  It's mind numbing and utterly exhausting to give this information over and over again.  I know Dan can barely stand to be there.  It's like reliving a nightmare.  It's like having post traumatic stress disorder.  You know no matter how hard you pray you will be back here again.  You will float above yourself and hear yourself saying the words.  You will almost believe this is just a bad dream.  And when you think you will choke on the sound of your own voice they offer you something to calm you down.   Have you ever had this before?  It's called . . . You want to scream at them but you don't.  You make a joke and tell them the exact chemical makeup of the drug they just offered you.  Dan grits his teeth and holds my hand for a minute.  He always says, "I love you Monki."  And they roll me away. 


All operating rooms mostly look and feel and sound the same.  They are freezing.  They always move you over in an awkward way to the actual table.  Everyone looks the same in their blue caps and masks.  Depending on the surgery they will start rubbing cold red liquid all over you and then you start to feel completely exposed and at the mercy of these people standing around you.  God, please make them put the gas mask on.  And then they do and in a second you're oblivious until you're in recovery and hurting really badly (and if you wear glasses like me, can't see a thing) and you know the hard part is just beginning.  Operating is easy.  Healing is not. 


I am a woman who has had six, yes, SIX, major surgeries in the past two years and more than I can really count all together.  That's an average of one surgery every four months for the last twenty four months.  Add in Dan's kidney fiascos and Danica's crazy major surgery and year long recovery and you're right to say our family has been asked to endure too much.  It is.  It's mind blowingly too much.  It is more than "Everybody has their stuff." And "You guys just can't catch a break."  It's more than a car wreck people want to rubberneck to see.  It's way too long and too far reaching to be a disaster or a tragedy.  I don't really know what to call it except "Our Story." 

Tuesday I saw Dr. Romero and was finally prescribed a nasal pain reliever that works.  I can only take it for five days.  I have had a clearer mind since being off narcotics.  I have been incredibly blessed by all of you who refuse to walk away from this mess.  I have had care packages and cards and visits with gifts and our family has had meals.  Without this love I might not have made it.  Our family would not have made it.  You continue to faithfully bless us in big and small ways.  Thank you.

Many of you have asked about the trip planned for last Friday to Cincinnati to see the pectus surgeon.  The trip was cancelled.  Through all this drama and two unexpected surgeries we have decided I will see a second opinion surgeon at Cleveland Clinic in late October.  This is when we thought I would actually have surgery.  My body cannot endure such a painful and drastic operation without first fully recovering from these.  I continue to have chest pain with exertion and other marked symptoms.  In my mind I think perhaps by late December I could maybe be ready.  The closing on our house is pushed, and it may be early November before we are even moved.  My girls are showing signs of really needing their mama.  My husband wants and needs me.  I need myself.  My brother and sisters need my parents back.  Their other grandkids need them.  We need to not need them. 


Tonight we are past our limits.  Dan hurt his back.  I stepped up and did more than I am even close to being able to do.  The left side of my abdomen is hurting and hard and swollen.  Just because I am stitched on the outside I know I am gaping on the inside.  I'm not feeling strong or brave or hopeful.  Could my faith be all wrong?  Maybe this really is all TOO MUCH. 

Or maybe it is exactly ENOUGH.  Our Story.  Our days written when as yet there were none of them.  Our strength for this day.  Stretching.  Growing.  Strengthening.  Grace in measure for every single breath.  New limits. 

Push.  Help us God to push.  Remind us why it matters. 

Monday, September 10, 2012

Everyone Poops . . .

Source: via Theresa on Pinterest

We take nothing for granted here.  There are day in and day out things you might never think of hoping for or praying about or celebrating that we have been holding our breath so long for, just waiting to see any movement towards our goal.  Since Danica's second brain decompression and fusion in October, 2010, she has had bladder and bowel issues.  On our most recent trip to Cincinnati Danica saw a special urologist and was also referred to a colorectal doctor.  We were told some of her issues were physiological and some were most likely due to neurological damage as well as the period of development she was in during the trauma.  We had overcome the urological issues with some help from the appointment, but the poop was just not happening.  Oh how this mama's heart prayed.  In the perfect storm of my newest pain and surgery and Danica heading back to school last week for full days I made my pleas for God to help us with this milestone top priority.  He answered.  Danica has pooped in the potty eight days in a row.  This is huge!

The bad news is I have not pooped for eight days.  I am in so much pain, and we are back to depending on God for even the most basic functions of life.  I am barely able to move around.  I cannot explain how hard this recovery has been.  Today I became very disheartened.  Our planned trip to Cincinnati this coming Friday and Saturday seems ridiculous.  There is no way I can do this.  I cannot keep doing this.  My body and spirit have hit a brick wall.  My Laney's birthday is Wednesday.  I need to go out.  I need to get a snack for her class and a birthday card and a few surprises.  I need to go to book club tomorrow night.  Would you believe I haven't been since January of this year?  I need to talk to friends about anything except this one note song.  I need to find some excitement about the house and moving and decorating.  I need to be able to walk just a block in the cool fall air and breathe.  But first, I need to poop.  Everyone poops eventually . . . right?

Saturday, September 8, 2012

How the worst can be the best

I can't show it all to you, but this is a glimpse of what my slashed and bruised body looks like tonight.  I've been cut many times and in so many places in my thirty-six years.  My excision of abdominal mass on Tuesday morning was the worst yet.  The pain has been frightening.  The swelling like nothing I have ever seen.  I have never so consistently taken pain medication and stayed this still after a surgery.

Strangely, I have not been lonely.  I have not felt frantic.  I have barely wept.  I have had a beautifully orchestrated parade of care packages and cards delivered that have ministered in the exact quiet way I've needed to encourage my heart.  I have much to share with you all when my strength returns, but tonight I need to say, "Thank you."  Your prayers are effectual.  Your love is making such a difference here.  It is the best recovery yet. 

Our hope remains.

Friday, August 31, 2012


Source: via Monica on Pinterest

It's Friday night.  It is Labor Day weekend and almost everyone I know is planning something fun to celebrate the last days of summer.  I am in bed.  I have a searing pain in my lower left abdomen that only dulls with strong pain medication but will not subside.  Since I wrote last week I have been to my doctor, the emergency room, a general surgeon and my gyn surgeon.  What was first diagnosed as a ventral hernia is now thought to be a large endometrioma grown into my abdominal wall.  I will have surgery Tuesday morning at Mercy to remove it.  Danica and I also had cultures come back positive for a nasty infection resistant to normal antibiotics.  This is all in a week for us. 

My frustration with this overwhelming pain and unexpected surgery is understandable.  I don't ask God "Why?" anymore, but I do cry, "How long?"  I don't doubt His provision.  I breathe it.  I move forward knowing I cannot keep doing this and still somehow finding the strength and Grace to make it through . . . again.

Thank you for praying for my heart.  I am discouraged.  I am sad.  I am weak.  I am broken.  I am all those things where God likes to do His best work and show His greatest glory.  Day by day and with each passing moment I will do the thing I think I cannot do . . . again.

Sunday, August 26, 2012

Super duper crazy huge news . . . constellations and light

We find our way in the dark
using light from the lives of others.
Their sufferings and celebrations
are like constellations in the midnight sky,
orienting patterns above the horizon.
Tracing their paths through the night,
we connect our stories to one another;
circling together, we turn toward morning.  J. Lynn James

Last Saturday we had the privilege of stopping by for a few minutes at a very special celebration of life and love and peace for our new friends, the Murphys.  We first heard of them when their home was completely destroyed by a fire earlier this year.  Something about the loss of their house and all their belongings resonated deeply with our family.  Perhaps because in many ways we have felt "homeless" for some time too.  There was a toy drive for their twin boys and their daughter and Delaney and Danica became very interested in giving to these children.  Danica chose to give her entire Littlest Pet Shop collection and all their habitats to the little girl because the information we received said it was one of the favorite toys she lost.  Watching Danica's sacrifice and empathy and willingness to give reminded me how much our girls are learning from the kindness we have received for so long.  I later met TJ and Heather at a Betterment event.  I was so touched by their journey and also the spirit in which they were able to receive from so many but also instantly want to be involved in giving back.  We know about this too.  About a week later TJ and Heather came to our home and Dan and the girls were able to meet them.  It was emotional to hear more of their story.  We have been waiting and praying with them since then for a new home and new beginnings. 

Saturday was the day.  As we walked through the yard to the beautiful tent under their trees it was like a breath of heaven was blowing.  Their children proudly gave a tour of their new home.  We couldn't stay long, but we chatted for awhile before their other guests arrived in force.  TJ asked what they could do to help us.  I cried in the patch of sunshine and breeze and love.  We want this.  We need this.  A house.  A home.  A fresh start.  Beauty from ashes.  A celebration.  A healing.  A catalyst to move forward.  Many days we bury this deep inside but when we see it and feel it and taste it we know it has to come. 

Later that evening we toured a ranch for sale about a mile down the road from my parent's house.  It was exactly what we have been praying for.  A rare listing because it is not a new home but not super old either and nestled amidst mostly colonials, it offers completely one level living.  It has so many windows and light that moves across the home from east to west.  More than an actual place to call our own I have been begging God for light.  The laundry is right off the kitchen and the kitchen directly off the garage.  This would mean just steps for me and not a hike from parking on the street into the house and down stairs or down the yard and hill to our back door.  It would mean not having to wait for Dan to always carry the laundry upstairs and going back and forth to switch loads and fold and then waiting for someone to bring the clothes back down to me.  It would mean a refrigerator big enough to hold a week of groceries instead of a few days and one where I wouldn't have to bend over and rearrange each time I needed something.  It would mean a kitchen where I could finally prepare healthy meals for my family again on a regular basis and implement many of the dietary changes I need for my own recovery.  It would mean a bathtub for Danica again.  It would mean we could yell or sing and dance or laugh or cry without the feeling we are disturbing someone or someone is watching us.  It would mean we could fall asleep to the sound of the rain on our window and wake to the sound of birds and the glint of morning sun.  More than anything it would mean we are not stuck.  It would mean we have a sanctuary again . . . "somewhere more holy."

Do you remember the first time we had to move here?  It was a heart wrenching decision after we found out Danica would be in a wheelchair.  This was the post when we first decided to move home after staying here at my parent's awhile.  It was the words of Tony Woodlief that comforted me so. 

" . . . This is the story of how we reclaim the things that are lost. It's also a story about how a home can be become sacred, and how in the process it can sanctify us as well. I can tell you these things because I have been in dark places--which is the only way any of us learns to love the light. . . Home is more than a place where we eat and sleep; it is where we learn grace, where we glimpse heaven. It is where we find or lose God, or perhaps where He finds us if we will only be still long enough to listen for Him." 

One thing I know for sure about our God.  He is working behind the scenes preparing all the details long before He reveals the plan for deliverance.  Isn't this what the entire Old Testament teaches us?  It's always through a story we can best see how mighty to save He really is.  The weaving of tragedy and heartache along with blessings and kept promises keeps us looking for the glorious Hope.  We live in this Hope! 

Monday night, two days after seeing the home, and never in a million years thinking we could really move there, God provided someone to pay the down payment, sign the contract and agree to rent to us long term until we could perhaps buy the home from them.  The only real modification needed is the flooring because the carpets are very old and smelly and part of my healing and staying well is really being able to control my environment and my reactions to it.  We will need to install laminate flooring.  I only shared this news with a couple very faithful prayer warriors who have been particularly invested in this desire of our hearts and already God has provided some money for the materials for the floors.  We are still praying for installation or at least help for my dad (who really should not physically be doing any work like this).  If all goes well we should close and have possession early October and be able to move in before my surgery.  Can you believe it?  We can't quite wrap our heads around it either.  God is good!

Just knowing I will have a suitable place for my very long and painful recovery gives me courage I really was not finding as I looked toward ANOTHER fall and early winter recovering from ANOTHER surgery.  I've had moments of submission but mostly have been bending under the weight of knowing I could most likely just not do it here and could definitely not do it without my husband and children with me.  I wish I could infuse even a taste of the joy in Dan and Delaney and Danica's hearts as they anticipate this move into our own space.

Home sweet home.  Won't you please praise with us?  So many of you have specifically asked for this for us.  Make it loud.  Sing it.  Dance it.  As you have wept with us, won't you rejoice now?  And please pray for the many details left with the inspection and closing and getting the home ready for our family so quickly before we head into another storm.

As soon as we had this news our Danica became very sick with a serious infection.  We have spent this week a little topsy turvy dealing with pediatrician appointments and wrestling medicine and also trying to get her to eat.  Dan and I quickly embraced after a brutal night of stress which takes a particular toll on my body.  I asked him if he was happy.  He said in Dan candor, "If we had a million dollars our life would still be our life.  It is not our circumstances that make us happy.  This just makes it easier to do what we need to do."  Yes, easier.  We know we can do hard things through Him, but we are so ready for just one thing to make the load a little lighter, the walk a little shorter, the days and nights a little more tranquil as we endure. 

We prayed together Monday night before heading to the house to write the intitial offer.  Dan prayed simply the Lord's Prayer.  When there are no words I love he prays like Jesus.

You're Holy.
Your kingdom is real.
Do your will here while we wait for heaven.
Feed us.
Deliver us.
Forgive us.
Help us forgive.


Super duper crazy huge news, right?!?!

Monday, August 20, 2012

How a well known Chicago based artist is sharing with Betterment and our family

I feel very behind in writing about so many things.  I don't want to push out posts just to be informational, because it's important to me to share my heart in the midst of this long road, but I am finding it hard to do certain subjects justice.  Sometimes there are truly no words.  When it comes to the love we receive in big and small ways I am aware of how inadequate my attempts are.  Still, I stumble here because I know your philanthropy is one of the most life changing parts of our journey.

I grew up in one of the most beautiful parts of the United States, in an idyllic town nestled in the Shenandoah Valley in Virginia.  My childhood was hemmed in by the Blue Ridge Mountains, and the sense of place and space, shaped who I am.  Others I know who had this same privilege have gone on to various walks of life away from Staunton and the surrounding areas, but the awe for where we were blessed to learn and grow and explore has never diminished.  One of these people is Dolan Geiman.  His mother, Lisa Geiman, was a talented and prolific local watercolor artist.  My parents still have a large piece of her work over their bed.  I came to know him through his brother.  We were all attending James Madison University at the same time.  Dolan was an amazing artist in his own right, but he also had the rare "it" thing it takes to combine your own life experience and passions with your abilities.  Over the years I have followed his career and bought a few small pieces of his art on Etsy.  The genius of his business partner and now wife, Alie Marie, has grown Dolan's business without ever compromising the quality or integrity of his craft.  Most importantly they are incredibly kind and authentic individuals. 

I mentioned before in a recent post about the nomination from The Canton Chapter of The Foundation for Community Betterment for their annual fundraiser Rocktoberfest.  They are the same dear ones who "adopted" our family in 2010 by chosing Danica as a recipient.  When they interviewed me for the blurb they would use for "marketing" we were focusing on heading to Boston and getting some help for my mast cell reactions and anxiously waiting to see Dr. Grubbs in Toledo for my POTS.  Since then our world has been turned upside down with my pectus excavatum diagnosis and increasing pulmonary and cardiac issues.  I am now facing a very painful thoracic surgery sometimes in October with a three month recovery. 

I have not been able to participate in the planning meetings for the event or volunteer like I want to.  The one thing Dan and I can do is humbly ask for others to donate to the live and silent auctions that help raise money not just for us but also other local recipients in need, and ask for you to attend.  I wrote a note to Dolan and Alie asking if Dolan would perhaps donate a piece of art to the auction.  I follow plenty of artists personally but none who's work is so near and dear to my heart.  Dolan had just introduced some beautiful originals for sale at Anthropologie (which most of you know is my favorite "window shopping" place ever).  Of course his Etsy shop is full of goodies for every budget.  One of the enduring qualities that shines through his work is his love of nature and the indelible mark of where we grew up.  When I saw the piece he donated for Rocktoberfest I was blown away at his thoughtfulness.  When I received a personal donation with a note just days after to help with our week long Cincinnati trip expenses I cried. 

Promise me you will read about Dolan's unique work here and browse even if you can't buy because art is good for the soul!  If you are local or even not so local I hope and pray I will see many of you at the September 29th event at the Cultural Center for the Arts in Canton.  Just like the event two years ago this evening will be right before we head to Cincinnati for a major operation.  The emotion of being supported and loved by so many in our community is a gift beyond measure.  Dan and I would so love to share this with you.  Please BUY YOUR TICKETS NOW, mark your calendar and get a sitter if you have kids.  I promise you it's the perfect date night and you'll meet some amazing people too. If you can't attend but would still like to make a TAX DEDUCTIBLE donation you can do it here.  (This is something some of you have asked about when making personal donations to our family.  The Snyders are not a non-profit organization although some would argue, I'm sure.  This is a great way to help AND get credit with the IRS.)

This is lots of links I know and not enough mushy stuff about how all this really makes me feel, but I hope you know your kindness HAS made a difference.  It DOES make a difference.  God is doing some work behind the scenes for our family we hope to share soon.  It could bring new promise, more hope and healing and restoration to what has been hurting and broken for so long now.  Thank you for not giving up.  The ending is going to get good.  I believe this.  We believe this.  Our Hope remains!