Drain it

"I do not believe one can settle how much we ought to give [to others and to charity]. I am afraid the only safe rule is to give more than we can spare. In other words, if our expenditures on comforts, luxuries, amusements, etc., is up to the standard common among those with the same income as our own, we are probably giving away too little. If our charities do not at all pinch or hamper us, I should say they are too small. There ought to be things we should like to do and cannot do because our charities expenditure excludes them."  C.S. Lewis

It's a recurring theme over the past few years and telling the specific stories never gets any easier, because no matter how many times I try I can't seem to write about them eloquently.   But I want to tell them again and again, because they all point to God and His faithfulness.  The acts of "charity" to our family have given us the very manna to stay alive and move forward each day.  There are no small acts of love.  Each one has been life altering.  I want to show my gratitude without using the same overused words.  I want to give God ALL the glory, and in my weakness I don't really know how to shine all this on Him.

If you just joined our journey please take some time to go back and read a few of these posts.  There are so many.  I remember the first gift like it was yesterday.  It was April 2010, and we were already drowning in medical bills from the six months of Danica's diagnoses period and her first brain surgery at UH.  We found out her Chiari was even worse, and we needed more opinions about how to move forward.  At the time we had two vehicles and our most dependable car had bad tires.  Dan's company had just cut bonuses.  My dad had been given money for a missions trip to China and the trip was cancelled.  He came over with an envelope and said the people who had given him the money for his trip asked that he pass it on to us.  It was just ENOUGH.  It didn't pay all the bills.  It didn't pay any of the bills.  The money combined with Dan's half bonus bought us tires so we could travel to find help for our girl.  We are still driving on those tires. 

This was before the "donate" button was prayerfully added to this blog or Cookies for a Cause or the Chick-fil-A fundraiser.  It was before the lemonade stand that ended up as an article in The Canton Repository and before the sweet girl from Australia found our blog and began loving us regularly.  The lemonade rippled into Comdoc, Sugardale Credit Union and The Foundation for Community Betterment doing a large work rallying an entire community of giving to help us survive.  There are so many more stories including the recent fundraiser by our faithful friend Christina Adam at Grace Designs Photography which also prompted her friend, Alivia, to do an online fundraiser for us.  There were Tastefully Simple, 31, Willow House and Premier parties whose directors and hostesses donated their profits to us.  We did not have the money for me to travel in October for my initial visit to Dr. Henderson, and these directly provided for the doctor's visits in Maryland, gas, hotels and the trip to Cincinnati for Danica's scan and my second opinion and additional scans.  Again, there was no money left.  It was just ENOUGH.

I often say our story is less about pain and suffering and losing everything we thought was important to us and more about God's faithfulness to care for us in ways we simply could not care for ourselves.  God has given us many more challenges including my bowel surgery early last year, Dan's recurrent kidney surgeries, and most recently my brain surgery and fusion.  There are always the Cincinnati visits and scans for Danica in the mix and travel and copays and prescriptions.  There is no real digging out of this mess in our minds.  I used to try to make a spreadsheet and assign dates or goals for contacting certain companies our medical debt has been "sold" to, but I quickly came to realize you can't promise people to pay what isn't there.  We keep the most important doctors paid so we can continue to be seen and let the rest slip to collections.  We keep hoping and praying I will be well enough to go to work again someday.  Then we will set up the plans to slowly pay them off.  One thing we are sure of.  God will always give us what we need today.  We will always have ENOUGH.

I apologize for the crazy long introduction to a new  story but stay with me.  The week before we headed to Maryland for surgery we had scraped together enough for a fifth of the down payment my surgeon was asking for through my parents and several other gifts.  We had several hundred dollars in our checking account for gas and food while we were gone.  I had this crazy peace God was going to come through for us.  The week wore on, and I began to pack my bags and get a little nervous.  I knew our support system was worn thin from the past couple of years and a woman who always had a headache and could barely walk but looked fine for all intents and purposes was not the most engaging fundraising idea especially compared to Danica's adorable face. 

I was laying in bed in my oh so dark bedroom curled up in a ball with the weight of the world crushing my brain, head and neck.  I wondered if I would even make it to my surgery date.  This sounds dramatic unless you really understand how dangerous my situation was.  My dad opened the door at the top of the stairs and threw down a letter.  It was from a girl who lives in Virginia who I used to work with.  I had only met her twice face to face because I telecommuted states away.  Over the past months she had begun to faithfully pray for me and encourage me through facebook and email.  I opened the card and a check folded in half fell out.  I read the note first.  I don't have it here to copy directly so I am going to paraphrase the best I can.  She said she couldn't sleep and was praying about how she could help us.  She said in the night she heard God tell her clearly to "DRAIN IT."  She obeyed.  I looked at the check.  It was a strange number.  I found out later it was every penny this family had in their checking account.  It was just shy of what we needed to pay the entire deposit.  I was shaking.  How in the world could someone give like this?  This family is not wealthy.  This friend works from home with two small children just to make ends meet.  I immediately knew God was completely behind this surgery.  He had funded it through the most unlikely of places.  Oh, I wish you could understand the way it feels to be given something like this.  It is so humbling, and so completely heart changing.  Once again I was back to the God of just ENOUGH. 

It took me awhile before I could finally find a few words to call this friend.  I was even more blessed by her backstory to the giving.  She shared of her own fear of not having enough and God's work in her life to put her treasure where she said her heart belongs.  She talked about how she had called her husband the morning after her prayer, and he too had to commit this huge gift to the Lord before the check she had already written could go in the mail.  (Ladies, can you imagine calling your husband and telling him God told you in the night to empty your checking account?)  She told me how over the last two quarters of 2011 they had paid all their credit card debt off by careful spending and holding back some tithe.  When the card balances were at zero they didn't up their tithe.  She later realized what they sent us was almost exactly the amount they had kept back.  God already had this provision planned long before either of us knew we would be part of it. 

Later that day I received an email of a paypal donation from my cousin who is a missionary in the jungles of Peru.  I couldn't stop crying.  She only has what God gives her in support.  She knows more than anyone how money is not really a currency in the Kingdom of God.  She too had been one of my most valiant encouragers through email and facebook.  She too gave way more than she should.  Here was the money for the plane ticket I didn't even know I was going to need to get home, the hundreds of dollars for the prescriptions Dan picked up when I went from the hospital to the hotel and the money for my dad and I's tickets back out to Maryland in a few weeks.  The next day I received a letter from the mother of a childhood friend.  It was a long, handwritten letter about faith whether healing comes or not.  She has lived this for the past twenty-four years.  She has been sick and searching for so long and yes, continually surrendering to our God who formed our bodies perfectly and writes our stories.  I put her letter in my purse.  I knew I would need it to read many times over.  Inside there was a check.  Money I still have for my trip in two weeks and our Cincinnati trip at the end of Febraury for Danica and I.  Our deductibles are at zero again.  It doesn't matter who we see now, in network and out of network, we owe it all.  In the hospital my dear Angie gave me an envelope with money passed on secretly from someone we do not know but who is praying.  A few more paypal donations from strangers.  More than ENOUGH.  Christmas was given to us through gifts from friends and family and the Jr. High group at church and a "loaves and fishes" plea from a family at Delaney's school.  We were able to regift money to a family we know who is in great need because of these gifts to us.  (A family I hope you will pray for especially in the coming weeks as God is asking them to do more hards things too.  You can read Melinda's blog here.) 

I didn't want this post to be a litany of givers.  He gives ENOUGH.  More than ENOUGH.  Isn't it amazing?  It doesn't matter how many times I tell these stories I still cry.  I can't begin to give enough glory to God.  He says in 2 Corinthians 9:6-7, "Remember this: Whoever sows sparingly will also reap sparingly, and whoever sows generously will also reap generously. Each of you should give what you have decided in your heart to give, not reluctantly or under compulsion, for God loves a cheerful giver." 

One of Dan and I's increased prayers is there will come a time when restoration will come to us financially, and we will be able to live out loud all this amazing love to others who are in need.  If this never happens in this life it is okay.  We have learned you can lose it all and still own the only thing that really matters in the end.  Christ has gone to prepare a home for us in Heaven even if we never own one here.  He has paid all our debts to the Great creditor.  He has made a way to sure healing with new bodies and no more pain.  We have a spiritual retirement account that will never go bankrupt.  This is the future and the plan He has for us.  Until the Promised Land we will continue to go out each morning and know the manna will be there. 

Soli Deo gloria. 

Four years, a glimpse at the big picture and ending Team Danica

I’m looking at the flat, barren landscape of 71.  This stretch of pavement between Columbus and Cincinnati is one I have grown to hate over the years.  If you paint our journey with a broad stroke or view this piece of art from a distance you may only see the colors of hope and healing.  They are vibrant and breathtaking.  But for us, the ones who have watched this masterpiece morph, no matter what news comes at the end of these trips, the road is bump after bump of pain literally and figuratively.  The dark shadows most think we should have moved on from are still looming at every mile post.  We see the financial drain each mile we move closer. No matter how God has provided we still come to this thicket wondering when and where the ram will appear.  Our new year deductibles chase us.  Knowing the cost is thousands of dollars to even walk in the door is a weight we drag behind us like chains on our ankles.  Because of my shunt revision surgery , Maryland trip out of network, more hotels nights, more driving, more of it all we gasp for air.  There is no choice but to keep moving even though it feels like quicksand.

I canceled this important trip earlier this year, because I was simply not well enough, and I just didn’t have the strength to do this.  Weeks before we come here I begin to have racing thoughts about the hotel, the hospital, the anesthesia, giving our girl up to strangers for hours while we wait, and the dark room where they show us the scans.   I hate the smells and the glazed over look in almost everyone’s eyes as they wander from appointment to appointment or down from their child’s room to get a meal in the cafeteria.  I have flashbacks of Danica in those days following her surgery when she thrashed insanely in pain, and I went days without sleeping trying to save her and orchestrate her care.  In the end there is the obligatory gift shop trip to reward  a little girl in some tangible way for her bravery in all this, and it seems like it is all a bad Lifetime movie.  Only this is not two hours with a happy ending or at least some inspirational and didactic meaning to carry away.  This is our life.  My chest is tight.  My head is aching.  I know the exhaust of the cars and trucks on the road are adding to my increasing feelings of anxiety and manic mind and heart.  The silence between Dan and I grows more caustic.  He closes himself off.  It has never been any different.  I want to talk this all through for the thousandth time, and he just needs to drive and do what needs to be done.  I begin to cry.  Every single time tears begin to fall down my cheeks the closer we get. 

I remember the first trip here.  It was April 2010, almost exactly four years ago.  (The picture above is Danica jumping on the bed in this very hotel.  It makes me cringe not smile, because the day after this photo was taken we found out how jumping could have paralyzed her she was so unstable.)  We knew Danica’s decompression in November of 2009 for her Chiari malformation had failed.  Many of her symptoms had returned and even escalated in the few months since we let them cut open her head and neck and shave away bone from her vertebrae to make more room for her brain.  Her little neck falling to the right again was the most glaring sign we did not succeed and perhaps had even made her worse.  Suddenly we needed to be much more informed about the condition and what underlying genetic mutations might be causing it.  We were scared.  Although the first brain surgery was scary, we still believed it was something really hard God was asking us to do just for a time.  We thought it was something broken in our girl we could fix.  Our first trip to Cincinnati solidified this “C” word was here to stay. 

Our “simple” Chiari story which seemed like a miracle for the first few months became our entire life.  You began to read here and raise money and pray.  We were overwhelmed as people from all over the United States and the world wanted to support us here at our little blogspot blog which became Team Danica.  I had always been a writer, but I never needed an audience for what I scribbled and pecked away in private.  I even tried to hide my writing.  Suddenly, I had hundreds of people checking in for updates, and not just to see how we were or what the plan was but to truly share our hearts in all this.  Somehow, in all the lament and torment of those early days, this place became where I could honestly share what this kind of journey looks and feels like.  Dan joined occasionally  to show his husband and daddy heart.  It wasn’t always easy or cathartic to keep coming back here, and I took breaks for sure because of fear or sadness or just plain exhaustion, but whenever I would stop writing people would email or message or call and tell me they needed to keep reading and following.  Team Danica became as much a blog about my health and journey as our sweet girls'.  Still you came to read and pray and support us.  

Four years we’ve been here. 

The well of love has always been deeper than the well of pain and suffering.

The strength and grace of our God has always been ENOUGH. 

The provision has always come.

Our Hope has remained even on the darkest days, because we believe. 

We believe because He causes us to trust and loves us even when we don’t.

. . . We are here in the hotel now.  Michael Card’s “Sleep Sound in Jesus” plays on my itunes while I type.  Dan and Danica are drifting off.  I can see the Children’s Hospital sign lit up in the dark from our window.  My prayers try to cover the hundreds of beds full of children who sleep there tonight fighting some illness, healing from a surgery, waiting for a diagnosis and the parents who sit vigil with them.  I pray for the doctors and nurses who sacrifice to join in these wars.  I pray for those who do not have a voice like we have to ask for prayer or support or a meal or a hug.   

I feel a calm peace about our tomorrow.  It may be my Ativan (smile), but more likely it is the prayer with Danica before bed and heading back to the arms of Jesus in the simple words of these lullabies.  I am reminded of a God moment from my Tuscon trip when He allowed me to see a big picture view of our life as it intersects so intricately with people we don’t even know. 

On my last flight home from Atlanta to Akron/Canton God sat me next to a woman from Wichita, Kansas.  I was tired and grumpy and very anxious about how my body was going to react to the pressure and weather changes.  I had the best and healthiest week of my life since before Danica’s diagnosis.  Besides missing my family I did not want to come home.  I politely settled into my window seat and asked her where she was from and where she was going.  She asked me the same questions.  I mentioned my shunt surgery and a trip to heal.  She asked me why I had a shunt, and I shared a quick headline blurb.  I really wanted to finish writing in my journal and listen to some music on this last flight.  She told me her nineteen year old son Jack was born with a spinal cord issue and at four months old they flew him to Cincinnati Children’s Hospital for surgery.  Guess who Jack’s surgeons were almost twenty years ago?  Yes, Dr. Kerry Crone, neurosurgeon and Dr. Alvin Crawford, orthopedic surgeon, banded together in a joint surgery that had never been done before.  This was no coincidence.  We gushed our stories to one another through tears.  Then it came out and stopped us both in our tracks.  It was the summer of 2010.  Danica was scheduled for surgery and Dr. Crawford pulled out leaving us with a brain surgeon but no willing bone surgeon.  Far away her son Jack was also scheduled for his last orthopedic surgery with Dr. Crawford to fix an issue with his foot.  He was fifteen years old. 

We now know Dr. Crawford was considering retiring that summer and so he was shying away from difficult cases he could not follow, especially a little girl with atlas assimilation and a failed decompression who no one else wanted to fuse until she was six or seven.  Jack could have had one of Dr. Crawford’s up and coming surgeons, and it might have been fine, but it wouldn’t have been what their family needed or wanted after so much care from one man.  I can still see myself praying on my knees by Danica’s  door at our house on 35^th St.  I didn’t understand why God would bring us to this dark place if He wasn’t going to see us through it.  If you go back in the archives and read my wrestling, the tension in Dan and I’s marriage, the palpable hysteria of not knowing where to go next you will understand in part my desperation.  Suddenly, Dr. Crawford was back on board.  He put himself completely into Danica’s case including designing the special hardware and having it made and taking her images and having a 3D model of her skull and cervical spine made to teach from.  Jack got his surgery too. He is doing well four years later. 

I can’t think of any other way God could have shown me how brilliantly He in charge and how little we need to know about it to trust Him.  One of the most beautiful lessons I learned early on in all this was how most of what is happening to  me and around me is much less about me than I ever could have imagined.  Yes, He’s working in and through me but it’s for something so much bigger.  Oh how I cheapen my life when I make my God small.  I see in a mirror dimly what He will make clear someday.  For some reason He chose to clean the mirror a little on my flight so I would SEE Him in even the last hours of my trip. 

I believe God is prompting me to stop writing this blog after our trip if Danica’s scans and x-rays are positive.  I want to do it thoughtfully and let each of you know where you can find us if you need or want to.  I will plan to leave it out on the internet for a period of time simply because of the number of people who find us through search engines in their own Chiari, Ehlers Danlos, POTS, PANDAS journeys and long to make connection with us because of all we have walked through.  Following my “mountaintop” trip to Arizona a few weeks ago, I do know my call to write has been solidified in a few other more demanding ways.  Please pray about these opportunities.  Also know I will be creating a new place to share less of my health and more of my heart and will eventually link from here and also contact those who are close. 

I promise for a quick update on the brain part of our trip tomorrow.  Danica’s MRI is scheduled for 7:30 am, and we will see her neurosurgeon, Dr. Crone, at 11:15 am.  The orthopedics scans and visit are on Tuesday.  We have every reason to hope for a perfectly good scan.  Danica has almost no symptoms of Chiari or any neurological deficit at this time.  Thank you for praying for the anesthesia to go smoothly and for all the details of the day.  We treasure your lifting us up! Please pray for our Laney who is back home with my mom.  She was very emotional about us going and called crying twice today.  This is not like her, and it breaks my heart. It was a reminder how much each one of us carry around because of Danica's health and especially what Delaney has been asked to walk through since my pregnancy with her little sister.  She is so brave and independent, but the first to say we should move to Arizona so she could have her mama back.

No matter what you are carrying tonight, I hope this wandering of words down our past four years and the glimpse He gave me of His sovereignty will encourage you to not crumble under the weight of what He asks you to bear.  He is doing something bigger than you can see.  

I know it for sure.  

Nuts and Bolts

You would think maybe it would get easier after awhile, but it never does. The preparation for another trip to the hospital mentally and physically doesn't become routine no matter how many times you've gone. The packing and saying goodbye to Delaney, the sleepless night before, the very early morning, the drive, the endless waiting in many different rooms. . . It is always stomach churning. After we had left Danica in anesthesia on Tuesday Dan and I sat in the radiology waiting room. We were both thinking the same thing. Every time we have a little secret piece of hope the news will be miraculous. We silently pray Danica will be better, not worse, and this will all just go away.

After a full day at Cincinnati Children's Hospital we signed the surgery consent forms. MiMi, Dr. Crone's PA, went over a folder of pre-surgery information and gave us soap to wash Danica the night before surgery and the morning of. I think this made it the most real. We are doing this. We will have a date sometime next week. For many reasons it will probably be at least a month out, and we have asked if it could possibly be set for early October. The details of the procedures are very hard for me to write, but I hope by putting them here it will help you understand the rarity of Danica's condition even in the Chiari world and the outcome we hope and pray for. In time I may be able to write about the risks but tonight they are still raw.

Danica will first have decompression surgery. The scan on Tuesday showed her left cerebellar tonsil herniation is increasing and the Chiari malformation is now down to the level of the C3 vertebrae. It also showed a right sided Chiari which she did not have before. The brain tissue on the left side showed sign of necrosis. This means it has been under so much pressure for so long it is literally dying. Dr. Crone will make a large incision in the back of her neck and head, directly over the incision from her prior surgery, but it may be larger because of the need for fusion. He will cauterize the slumping and herniated brain tissue. He will then sew in a stent to help prevent her brain from "falling" back into her spinal cord following surgery. He will cut open the dura (the thick, outer layer of the covering of the brain and spinal cord) to try and maximize CSF flow to Danica's brain. He will apply a dural patch to allow for this extra room and put in a drain that will stay for the first 5 days or so following surgery. He will not plan to remove any more bone. It is critical Dr. Crawford have as much bone as possible available to him in the next stage of the surgery and any more bone removal would add to Danica's instability.

After all this Dr. Crawford will step in to perform the craniocervical fusion. During our visit Dr. Crawford and Dr. Crone explained the complexity of Danica's case and her age make this fusion difficult. There is no instrumentation small enough for Danica's very abnormal bone structure. These rods and pins and screws will be special made for her. The most critical part of the fusion will be the bone graft. This will help rebuild her stability. The casting decision will be made until after the fusion is performed. For both Dan and I this is the part we are most afraid of. We will not know until Danica comes out of surgery if Dr. Crawford decides he needs a halo cast or a Minerva cast. The photos are above. The halo cast requires actual screws into Danica's skull. We are praying the fusion will be deemed successful enough they will choose a Minerva. We can not even wrap our head around our sweet girl living in either of these, but this seems the least brutal. Danica must be immobilized for approximately 12 weeks following surgery to make this fusion a success and give her the best chance.

These are the nuts and bolts of what will happen. Over the next weeks I will write more about what the hospital experience will be like, our planned support system and timing. Thank you for lifting us up. We truly do have a peace over us that can only be explained by your fervant and effectual prayers. Our hope remains.

Glorious Impossibles

And the angel told her, “The Holy Spirit will come upon you, and the power of the Most High shall overshadow you. And the Holy Thing which shall be born of you shall be called the Son of God.” What an amazing, what an impossible message the angel brought to a young girl! But Mary looked at the angel and said, “Be it unto me according to your word.” And so the life of Jesus began as it would end, with the impossible. When he was a grown man he would say to his disciples, “For human beings it is impossible. For God nothing is impossible.” Possible things are easy to believe. The Glorious Impossibles are what bring joy to our hearts, hope to our lives, songs to our lips. -Madeleine L’Engle

As hard as I've tried my head and my heart have been derailed in my feeble efforts to keep focus on the truths of this Advent season.  This is the week of hope. Stuart McAllister wrote "...the difference between optimism (short term and easily overcome) and hope (eternal and anchored) is where they are rooted. One leans on human effort; the other rests in God and God’s promises."  Thank God nothing rests in my tries that often fail but rather in His promises that are sure.  

I'm sitting in my bedroom against a pile of pillows with a heated throw over my aching legs.  It is freezing outside, and I've come from the local hospital and a page of blood work that would make your eyes cross.  No one at the hospital had seen some of the labs the PANDAS doctor had requested.  Once again, I am the rare patient trying to share some of my journey and raise awareness while the nurses drain 13 full tubes of blood from my blue arm.  They watched my face turn more and more ashen as I slumped in the seat but urged them to keep going because a good vein is a treasure that can't be wasted.  I drove myself which seems like a great idea on my way somewhere and is always a bad idea after I've been exposed to people and places and their smells. Add my anxiety on top of mast cells and losing so much blood, and I could barely lift one leg in front of the other.  Thank God for a handicap parking tag.  

When I safely made it home, and I crawled into bed the sun in my west facing window peaked out from the grey clouds.  My heart swelled with gratitude and tears slipped down my cheeks.  There are a hundred shining moments like these day after day.  I can't take any of this for granted.  The commonplace to so many are glorious impossibles for my family and I.  We are learning to live again.  It will never be like it was, but it is so much better than it has been.  I'm working with a counselor on the nitty gritty parts of life as a chronically ill person.  I am finding ways to join real life again without ruining the progress I've made.  Friday night this meant I braved all the people and perfume and cologne to attend the first part of Danica's Kindergarten concert.  I sat in the back row wearing a mask, and my dad left with me after her part was complete.  Sunday, our family was blessed to attend "A Very Canton Christmas" with our Pee Paw and Kee Wee and then go out to dinner together.  Again I wore a mask.  What I thought would make myself and others so self conscious actually was okay.  My girls were understanding and not embarrassed but instead so glad I was there with them.  I spent yesterday weak and worn, but it was so worth it!  

When I reflect on this past year I can scarcely believe I survived all the trauma of my three surgeries and hospitalization for adrenal failure.  I am in awe of the complete eradication of my abdominal pain from the endometriosis.  I stumble when I talk about the risk and cost of having my fusion hardware removed only to be completely pain free in my neck now.  And then there is the shunt.  Oh how I fought getting a shunt because of my fear of failure and revision and especially the big cuts and having something hard and foreign in me. God orchestrated my suffering in such a way that I had no choice.  I could not have continued living with the torturous pressure and loss of vision.  It was your love that showed the way.  Now I am headache free!  All of these changes in my health are glorious impossibles.  I am out of bed most of the time now with quiet resting from fatigue and continuing EDS symptoms that I will always deal with.  I am hopeful about the coming new year. I have lists of things I want to do with my girls and share with my family that we never thought I might be able to do again. I am falling in love with Dan again.  I never thought I could love him more, but without the constant pain I am able to see clearly the beauty of his commitment to me during these long years and his faithful service to all of us.  I want to spend time with him too.  Thank God for the strength and grace to endure.  Do we dare be excited for the future?

i was listening to a message the other day specifically addressing stewardship and God's expectations of us in regards to our finances. This is one area that continues to seem impossible to both Dan and I. There's no Suze Orman or Dave Ramsey advice that will rescue us from the great cost of my sickness.  Looking forward to 2014 we hope and pray we could go a year without surgery of any kind.  Still, we already have big appointments for Danica in Cincinnati in January and the cardiologist for me and once all this blood is back I have to save enough to have another consult with the PANDAS doctor.  Instead of Christmas Dan is getting tires for his commute to Fairlawn every day in this dicey weather.  My car is making the worst noise and the tires are bald.  We stay frozen even if the money is finally saved because we are afraid to spend it on tires and then need it for prescriptions or a trip to a doctor.  As I have felt more well I have been back to my stacks of bills.  I started writing $10 checks to some thinking if I cycle every three months I could at least keep people from suing us. There is one creditor that is at attorney stage.  Some days I am trusting and peaceful and some I am paralyzed with the not knowing how we will get out from under all this and particularly the guilt that my family is suffering debt and begging on my account.  The preacher on the radio was talking about how everything is really God's.  He gives some of us much and some of us little.  How we handle His gifts speak to so much more than actual money.  Except for when I'm opening bills or ignoring collection calls I feel nothing but blessed . . . even rich. When I was sitting in my doctor's office last Friday for my 7th Pen G injection my dear doctor, who has journeyed all this way with me, reminded me of the faithfulness of God.  As an outsider watching this story unfold she can see how we have never gone without what we needed, not only our day to day needs but also support for medical care.  I realized as I left if I had not continued to write here and share over and over the big and little ways God has loved us through you He would not have the glory He has received because of it.  I have only ever asked for enough.  I realize freedom from this thing that threatens my peace and joy may never be God's plan.  Still, I have to dig deep and believe if He can straighten Danica's neck and heal her brain and pay all her bills and then tenderly guide me to each one of my surgeons and heal me time after time when I've been sliced and sewn He can still remove the bondage we are under.  I don't have a headache anymore and He owns the cattle on a thousand hills.

I'm asking for my prayer warriors to lift our family in prayer as we anticipate a new year.  Won't you thank Him with us for all the seemingly impossible things He's accomplished in us and for us? Please ask for wisdom as we try to face the debt.  We need to know how to move forward with continuing care within our means and still pay something to our dozens of medical creditors.  We need to know if fixing our old white car is the right thing to do.  In the past I've been so sick I was willing to just sell it, but now I am able to drive myself to most of my local appointments, and it seems repairing the issues is wise.  We just don't know how to move with big decisions because we are so accustomed to fighting for the day to day.  Please pray for our family as we adjust to me being more well.  It changes everything.  I am in many ways reentering the family life and as joyful as it is there is also a friction because I was in all practical ways absent from so many things.  Our marriage needs strength.  Our parenting needs intention.  We need to find an outlet for all the good we've received to turn this story into something bigger than just us.  

I know many of you are facing similar struggles.  I want to encourage you.  Whatever you are staring down that seems impossible give it over to God.  Nothing is impossible.  I was the prodigal who came home.  I have seen enough healing to know God is still working miracles.  I have seen food appear on our doorstep when we were hungry.  I have seen a check show up in my mailbox before a judgment was given.  I have watched God lead us with the light of love.  Don't give up.  Live in the hope He gives each of us that He is working all things for our good.  Grab the shimmering moments of Grace, because it is ALL Grace.  That's the Christmas story.  

24 hours of vacation and 4 years later. Celebrating and remembering.

I'm laying here in a a super comfy hotel bed in a Residence Inn at Polaris in Columbus, Ohio.  Dan is downstairs swimming with the girls.  We left our home fairly early this morning to begin twenty-four hours of the first trip together as a family since Danica's wish trip in April, 2011.  I know, it sounds crazy, but it's true.  Dan and I have gone many times for my surgery trips in Maryland.  We have gone together with Danica for numerous Cincinnati trips.  I've done surgery trips alone and with my Janet, and I took my Tucson retreat with Amy in February, but we have not been away together, all four of us, for three and a half years.  Every bit of our resources has always gone to medical travel. This summer when I felt well and Dan had a little vacation time saved for the first time in five years we just couldn't afford to go anywhere.  Heading into me leaving again in two weeks for another surgery, my eighteenth surgery, I wanted to plan this getaway.

We had Marriott points to pay for one night.  This hotel is brand new, suite style with even a kitchen, and so beautifully appointed I would swear it is from the Autograph collection.  My sister-in-law works for Marriott, and it has been a blessing in many ways because we have had to use hotels for Danica and I's medical trips.  Hotels we could not afford are reasonable because of our friends and family rate.  I am really particular about my space for many reasons especially because of my sensitivity to smells and the comfort of the mattresses.  We've stayed at Marriotts all along the point levels, and I know which ones to ask not put bath products in or request chemical sensitivity rooms when available.  I know which floors to ask for and how far from the elevator I want my room.  The Marriott in Greenbelt, Maryland knows and remembers me I've stayed for so many surgeries and trips.  I love that Melba answers room service and anticipates I will order the veggie burger, no onions and everything on the side with sweet potato fries. The staff don't let me lift a thing, they call me cabs when I'm there alone, and there is a full service Starbucks so I can treat myself to a white mocha before some of the longest days of my life. I am grateful in the midst of hard travels we have had very comfortable accommodations.

Columbus is home to two of the best shopping areas in Ohio.  Shopping is something we just don't do.  I joke if we can't buy it at Target we don't have it.  We shop clearance online for clothes because the smell of stores and the people shopping make me very sick, standing on cement floors hurt me and pushing hangers to look at things makes my right shoulder pop out.  My girls are both at the age where going to the mall would make them very happy.  I know this is a first world problem, but it is an example of how our lives are so different because of my chronic illness.  Easton is good for me because you can leave most stores to enter fresh air.  There is good handicap parking and Dan can move the car around to limit a lot of walking.  Oh, and there is an American Girl Place and a Delia's. Both girls have had birthdays in the past couple of weeks and received money.  Each one knew exactly where they wanted to spend it.  It brought Dan and I such joy to see them wide eyed and carefully budgeting and selecting what they would buy.

We have friends who have made a tradition of sending us pizza for the girl's birthday.  This year they sent money for each of them to pick a restaurant and go out.  We rarely eat out for many of the same reasons we don't go shopping.  Delaney picked an awesome burger place called The Rail and Danica, of course, picked PF Changs.  This has always been the place in Cincinnati we go after scans, x-rays and appointments to celebrate her being oh so brave.  Today was made more special because Laney was with us.  We were all together.

The day wasn't perfect.  Dan and I argued about directions.  We never argue.  I was in considerable pain and overstimulated by the time we were heading to the hotel.  My communication breaks down quickly in these situations.  I took some meds and fell into bed while Dan watched football, Delaney looked through her fashion finds and Danica played with her doll.  My girls didn't swim at all this summer so the luxury of an indoor pool is a big deal too.  One of the sometimes hidden gifts my girls have been given through so many years of a life that often looks very different than their friend's lives is the pure joy and appreciation that comes from very simple pleasures.

Four years ago we were at the Springhill Suites in Cincinnati preparing for the hardest day of any of our lives.  Delaney had stayed back.  My parents were there and Dan's dad and sister Mary.  I remember Dan's dad getting teary eyed several times because when he looked at her, just three years old, she had no idea at all what was really going to happen the next morning and how it would affect her not only the next year it would take for initial healing but for a long time after.  We had been through one brain surgery, but this was so much bigger.

This is what I wrote.

"This is not  how it should be. This is not how it could be. But this is how it is. And our God is in control."

This morning's appointments at the hospital went well. Thank you for praying for us. The reality of tomorrow morning and handing Danica over to this team of people who could never know her or love her like I do sends me reeling. If I try to think about the hundreds of details that go into this surgery; the anesthesia, the brain being cut open, the brain being coagulated, the patch, the stent, the drain, and then after all that the bone cutting and grafting and titanium and brace. . . When I try to find something . . . anything to hold on to there is only one sure thing. I believe with all my heart and soul our God is in control of every single moment. I will go crawl into bed now and hold her while I plead with God for the miracle we hope for and the grace to accept anything less. 

The song below by Steven Curtis Chapman was playing in my head and heart that night.  As we snuggle here in another hotel room, now together as a family, my seven year old Danica girl for most intents and purposes is miraculously healed.  Everything I ever believed about who God is has been tested a thousand times since.  He has enlarged our territory to include relationships that have provided for us and sustained us when we simply could not survive on our own.  He has preserved Dan and I's marriage through unspeakable trials.  He has protected Delaney in the sometimes lonely space when we could not be there for her and particularly when I simply could not mother how my heart desired. Our entire lives are richer and fuller.  Our eyes are now wide open to the power and possibility of real faith and lasting hope.  There are plenty of times I doubt in my walk with God, but in this one thing I have never been more sure.  Our God is in control.  You either believe in His providence and His ultimate desire to work good for His glory in your own life or you falter in the vague world of fate and chance which ultimately leads to perilous despair. Because of His grace I choose the first. I know it is true.  His great faithfulness over and over again proves He is in every single detail even when we may never understand.  

Tonight I am full of gratitude for four years of testing and proving.  I am thankful for twenty-four hours of vacation with my family.  Our Hope remains.

Health care, self care, decisions and a shunt revision

I'm propped up here in my bed with my favorite quilt bunched up around me and my sweet Twix burrowed so close to me.  She doesn't want to leave my side today even though Dan and the girls are home. It is amazing how dogs are connected to their humans in such a way they know when that person needs extra attention and love.  I had to get her to leave my chest so I could write, but she was laying on top of my heart and sniffing and kissing my head.  I have known for awhile now she understands when my pain is unbearable. When my endo was growing so bad in my abdomen she would lay across the pain area and sniff.  One of the hardest things about thinking of leaving to got to the hospital for surgeries is not having her with me.

I haven't been writing here because I made a pact with myself in the new year to try to step outside my health issues most days and really try to live.  My word for the year is "PLAY".  I look back at pictures of my former self and see the light in my eyes, the silliness and joy and excitement for living.  It has been years now. I have been under a cloud of suffering for too long.  It is as if this piece of me that could enjoy even basic pleasures was cut off for good.

I have been seeing a new counselor, and we have been talking about self care and playing.  I come from a place of either thinking all this is punishment for sin or just looking ahead to a life beyond this one when I will finally be released from all this.  I feel guilt wanting to have my hair done or my hideous feet, which I cannot reach without great pain, given a pedicure or caring for my body in other ways because so much has financially been spent on my health care.  She has helped me to realize health care is very different from self care and self care is an important part of being an image bearer of God. This is not selfishness.  This is recognizing who you are in God's eyes through Christ. I have never fully understood what I am worth in this light and never connected my physical body to spiritual wellness. Imagine such a disconnect continuing for so long especially when you are seeking healing so desperately.

She gave me a mission.  To think of a warm place away from here and go.  I planned a trip.  It is two weeks from now.  I planned to go to Arizona.  My sister-in-law would come for a few days, and I would have a few days alone.  I would be somewhere sunny.  I would rest.  I would breathe.  I would walk.  I would plan some self care.  I would eat healthy food.  I would pray.  I would retreat.  I would play.  I would be outside. I would enjoy.  Just the looking forward to this trip has given me a joyous expectation I forgot could exist.

This past Tuesday, after a day spent at the Canton Museum of Art pouring over the St. John's Illuminated Bible with my Janet, I came home with an awareness of my shunt I haven't had for a long time. There was a storm coming in, and I began to feel the buzzy pressure in my head that grew with each hour and a sharp pain at my shunt site.  I could not sleep.  School was cancelled the next day for the girls, and I could not get out of bed except to make them a meal and then crawling back to hold my head.  Noise, light and movement make it much worse.  Danica was affected by the storm too.  Her neck was hurting and her other joints, and she spent all day in bed next to me. There is never a day I am bed bound I do not feel guilty about what my kids are missing.  I wish they could be out romping in the snow or I could take them to a movie or be up and working a project.  No amount of counseling will change this regret and sadness I have when my own health affects my children.

Thursday and Friday my girls were already planned off school.  We spent Thursday much like Wednesday. The weather was still so dicey, and I held out hope my shunt was just not keeping up with the demands from the pressure changes.  I did finally call my neurosurgeon's office on Thursday afternoon in tears.  He was in surgery, but his nurse took notes and talked me through what might be happening.  By Friday morning I had spoken to my neurosurgeon, and he suggested I get a scan of my shunt to make sure there were no structural issues.  Dan had to leave work at lunch to come home and watch the girls and they drove me to the ER doors and let me out.  Oh God, how many times have I been left at the doors of the hospital?  I was there for eight hours.  We got pictures that confirmed I do not have any disconnects in my shunt or broken pieces, so it is most likely a flow issue.  Again, my angel Janet came to be with me.  Much like my sister Rochelle, when she is with me I feel so protected and advocated for.  She makes me laugh even in pain.  She never makes the frustrating situation of an ER and all the waiting and nonsense about her.  I never feel like she didn't want to be there.  This is a blessing beyond measure because Dan is not good at this role.  I am always trying to manage his stress and reaction as well as my own pain and response.  We are both so grateful for the times others have stepped in and let him be here with the girls still knowing someone was with me.

Dr. H and his nurse and I talked about the next step.  Get the scans. The scheduler would begin getting insurance clearance and by Monday morning I should be on the schedule.  He would want to see me preop on in his office on Wednesday and would do a shunt revision surgery on Thursday at a surgery center in Silver Spring.  He also wants a flexion/extension MRI while I am there to check on my fusion following my hardware removal.  I have looked at flights and hotels.  I have planned out in my head how the days might go.  More than the pure exhaustion of heading back to do this again, despite knowing how problematic shunts can be and how blessed I am to have had relief these horrible winter months with my first one, I am so worried my trip to Arizona will be spent in some kind of flux instead of peace and rest and play.  I didn't plan to be away from my family two weeks in a row.  Dan is still not at his six year anniversary date to reload on vacation days.  My mom and dad have several trips of their own planned in the coming weeks.  My brain is cloudy.  I have moments of just plain anger this is happening now followed by the exhaustion of what is before me.

I have been lying here praying for my symptoms to ease enough I could wait for this surgery until after my planned retreat.  I have been begging for God to show me what is the best decision in moving forward.  I am overwhelmed at thinking tomorrow morning I will have to finalize and then buy tickets and reserve a room and plan transportation and pack all while suffering this crushing pain.

Tomorrow is Dan and I's 13th anniversary.  There will not be a candlelight dinner reminiscing about how far we've come.  There will be no extra beauty effort on my part to show him I treasure my own body as his own.  One flesh.  Who would want to be part of this scarred and broken body?  This week is Valentine's Day.  Once again my girls will be the motherless children at their parties at school. They will get notes written by me left behind to remind them I love them, and I'm sorry I'm not there.  Again.

There is no amount of psychology or self care or planning that will make this different or better.  I'm asking you all to please pray for me.  Pray I will have a sureness about moving forward with the trip to Maryland and revision if that is what I am to do.  Pray I might be well enough to still have my retreat in Arizona the next week if only to heal.  And would you most of all ask God to be with my husband. Would you ask God to show him how his faithfulness and sacrificial love are a bright light. Would you bring him some measure of joy or play or hope even when I cannot find my way to those things.  And pray for my girls.  As much as I show them my love however I can and spend time with them in the confines of my home and my bed, I am worried about what they miss.  They are desperate for playdates and sledding and invitations to homes where people are laughing and moms are silly and there is planning for something other than another surgery. My Laney is hurting.  I see it.  We have been trying to go on a mother, daughter shopping date for weeks now, and I have not been able to go because of the weather or how badly I feel.  Driving is one of the hardest things for me. I want this day with her.  Danica is much like Twix in that she stays closer to me the worse I feel.  Her heart understands my pain, and she doesn't make an mechanism to move away from me during these times.  She missed her friend's birthday yesterday and has been begging for a playdate with another friend, and I cannot make these things happen.  The strength I have to push through and feed them and bathe her and make sure their homework is done is what I can do.  I cannot make social things happen. I could not get them to Sunday school this morning.  I know they need things, but I can't make it to Target. Dads are awesome but girls want their mom.  I need to be able to do this.  I worry if they will blame me or love me when they look back at these years.  Pray I will use every bit of what I can to love Dan and Delaney and Danica as best I can and God will work on the heart issues.

I must end by reminding each of you that read here how grateful we are for your love and support.  Already this year we have seen God moving before us to make a way in the wilderness.  Much like the Illuminations I saw for the St. John's Bible, there is always the gold thread of God's presence and loving plan running through even our hardest days.  I believe this more than I ever have.  I want the story to have some kind of restoration, celebration, land of milk and honey resolution here in this life.  It may not come.  But the changing of our hearts day by day and the healing of our eyes to really see Him and know Him is preparation for the eventual total healing of my body and our souls forever and ever.  This is Grace.  Our Hope is built on nothing less!

(Because so many of you have asked.  This is what my shunt looks like.  It is sewn in below my ribs on the right side of my body.  I have a four inch scar where the incision was made to initially place it.  I also have a scar on my right side where the tubing was wrapped around and another scar in my lumbar area where the tubing begins in my subarachnoid space.  This is an explanation of a lumbar shunt.

The lumbar-peritoneal shunt is inserted between two of the vertebrae in the lumbar region of the spine into the subarachnoid cavity, also known as the subarachnoid space. The subarachnoid cavity is a spongy tissue-filled cavity that surrounds the brain and spinal cord, and this is where cerebrospinal fluid (CSF) is contained. The shunt is placed under the skin and continues around the oblique muscles on one side of the body, and terminates at the peritoneal cavity, a cavity in the abdomen area of the body. Once in place the lumbar-peritoneal shunt is used to drain the excess cerebrospinal fluid from the brain via the Subarachnoid cavity and transport it to the peritoneal cavity, where it is eventually absorbed by the organs and passed out of the body during urination.

The revision of a shunt means to replace or make adjustments to all or part of the shunt, this also means that the location of the shunt may be changed therefore changing the category or type of shunt a patient has. For some patients with shunts, a revision or multiple revisions to the shunt may be required. This can be something minor, such as adjusting the setting on a valve to change the flow level through the valve to replacing a substantial length of the shunt, or even replacing the entire shunt or relocating the shunt route to a different part of the body. For example, it may be required for a patient with a lumbar-peritoneal shunt, if multiple revisions are required or overdrainage is occurring, to have it replaced with a ventriculo-peritoneal shunt (VP shunt).

Shunt revisions are required due to the following complications:

Over drainage

Under drainage

Infection

Blockage or obstruction)

This is not how it should be . . .

This is not how it could be. But this is how it is. And our God is in control.

It's dark in our hotel room/  This morning's appointments at the hospital went well. Thank you for praying for us. The reality of tomorrow morning and handing Danica over to this team of people who could never know her or love her like I do sends me reeling. If I try to think about the hundreds of details that go into this surgery; the anesthesia, the brain being cut open, the brain being coagulated, the patch, the stent, the drain, and then after all that the bone cutting and grafting.the titanium and the brace . . . When I try to find something . . . anything to hold on to there is only one sure thing. I believe with all my heart and soul our God is in control of every single moment. I will go crawl into bed now and hold her while I plead with God for the miracle we hope for and the grace to accept anything less.