Saturday, March 29, 2014

Brave enough to look

It wasn't long after Danica was born when I wanted desperately to grab something of life again. Navigating the real world after the suffering and "incarceration" of my pregnancy was very hard for me. I still felt like those months were a horrible nightmare, and I lost myself somewhere in the swirling pain and grief. Once it was over I did not feel real or capable of living like I had before. Dan dropped me at the Shady Grove metro station, and I took the train to meet my sister-in-law, Amy, who worked in the DC then, for lunch and to see an exhibition of Annie Leibovitz and Ansel Adams at The Corcoran. I had always admired Annie's photography, but this was on such a large scale and shown in a progression telling her life story. The exhibit was photos drawn from the book just published by Random House, "A Photographers Life, 1990-2005." The photos hardest to see were of Annie's partner Susan Sontag during her fight against cancer and the end days. Annie even photographed her body after she was dead. When interviewed by The New York Times Annie spoke about the backlash she received even by family for including these intimate photos or even taking them at all,

“Let me be very, very clear about this,” she said in a long conversation in her studio in Greenwich Village, during which she alternated between speaking openly about intimate corners in her life that the photographs inevitably expose, and seeming to regret having said anything at all. “Every single image that one would have a possible problem with or have concerns about, I had them too. This wasn’t like a flippant thing. I had the very same problems, and I needed to go through it. And I made the decision in the long run that the strength of the book needed those pictures, and that the fact that it came out of a moment of grief gave the work dignity.  You don’t get the opportunity to do this kind of intimate work except with the people you love, the people who will put up with you,”

We don't have a single photo of me during my later months of pregnancy with Danica. It was so ugly. The only place it is real is in my mind and heart and the few people who were brave enough to look.

This morning I am crushed with pain. My head is numb from my ears up. I feel so nauseous from my pain I keep dry heaving. I am shaking and twitching. My arms go numb on and off, and I can't feel my feet which are so purple they look black. Something has been growing back in my abdomen. The stabbing knife, the dull ache, the pressure . . . the evil creeping demon is back. My inflammation is off the charts. It affects me there and everywhere. My joints are falling out of their sockets. I put my hip and a shoulder back in place this morning. Here's where you look away. I am bleeding. Whatever is growing is pushing my bowels out of my body again, and I hold my breath and bite my cheeks to go, and I look, every time to see how dark red it is and how much, and I cry. I come out of the bathroom, and I am wife and mother and daughter and friend, but I am dying inside. I say I believe, and I hope and just a month ago I was in a place where I felt no pain. Here I am under the grayest skies in the cold grip of disease and suffering with a bit of a healthy glow left and all the determination and dreams in the world.

My girls had spring break this week. I began by taking Delaney to a Christian concert with her best friend and her mom last Sunday night. I spent days before in bed, and it was only love that forced me into the shower and on to this experience with her. We worshiped together, and I lifted my arms to Jesus while Mac Powell sang "Blessed Assurance" even though my shoulders popped out and seared with pain. Monday and Tuesday we stayed in our pajamas while I tried to recover. Wednesday we had dentist appointments. Something about pushing myself to drive across town and care for my girls in this way gave me validation I am still fit for this mom thing. We had lunch at Panera, but I couldn't do more. I fell into bed when we got home. Thursday I drove to my dear grandparent's house. We hadn't been there in months. It was a good visit in one of the places that makes me most peaceful and safe with quite honestly the two people in the world who I know I could run to no matter what. They are aging. I didn't see it for a long time and now I think for moment what it might be like with them gone, and I can't breathe. We spent time with my cousins and their children, and I made a pact in my heart to nurture these relationships more. We will need to keep our family. I was hurting so badly, and it started to sleet, and I thought, "How in the world will I make it home?" I made it back to my bed. Yesterday a sweet teacher from Laney's school offered to take her and a friend shopping to the mall. The mall is like Las Vegas for my kids, a glittering mecca of commercialism we drive around frequently but cannot enter because it could literally kill me if I passed Abercrombie or Macys. If we can't buy it at Target or online we don't have it. I promised Danica we could finally visit her friend Brooke because they moved into a new house closer to us and without a mold problem, a house we prayed and prayed for them. Danica and Brooke dressed up their dolls in every outfit imaginable for a fashion show and a talent portion and Melinda and I scored and judged. It was good. I sat on the couch biting my cheeks and moving my position over and over from pain. Danica and Brooke share Chiari and Melinda and I share the same genetic disease Ehlers-Danlos Syndrome. She is doing so much better, and I didn't even want to hint at how badly I felt right then even though she would have understood the most. I have begged and pleaded with God to help her, and He has. There's nothing worse than raining on a parade you begged God for. I dropped Twix off at the groomer on our way there, something Dan does on Saturdays, but I wanted to do for him to encourage him (he hates that word), and we are finally getting new tires on the white car (remember the last pair we bought with God money in early 2010?), and I wanted to drop the car at Firestone so Dan wouldn't have to go out after his long drive home from work in Fairlawn. My friend met us there and took us to pick up Twix and brought us home. I crawled back in bed and cried just a little. I had done spring break. Definitely one for the books, right?

Imagine every evening of this week my dear Dan comes home to find me curled up in bed, sometimes with a tear falling down my cheek. I have nothing left for him. I sometimes do when the girls are in school all day, and I don't drive anywhere or have to get "dressed up" but this week every ounce of me was drained. This man who loves me no matter what sent me an email early in the week, after the concert and after Monday night seeing me stuff all my suffering deep inside and snuggle and play and read with my girls. In classic short and to the point, but there is so much heart behind it, style it said, "Hope you have a good day. You seemed to have been running on adrenaline yesterday…You seemed “happy” or “content” in interacting with the kids. Long week so take it easy BiMS. Weather gets a little better Thursday." His subject line, "HopefulTUES".

This is where my heart breaks. I have been working on a collage of my hopes for the year. I have been journaling a list of 40 things I want to do before I turn 40. I have lost so much, and I don't want to write about it anymore or spend more time grieving it. I want to grab sweet moments and push myself as hard as I can to LIVE. I don't want to spend another minute trying to reconcile my idea of what God could do with me if I was healthy with what I believe to be true of His goodness and sovereignty next to these days of body racking sobs of insane desire to QUIT.

This is why I am ending TeamDanica and taking up space somewhere new. It will come in the next few months because the logistics and work behind it are not complete, but I know whether it is 10 of you or 1000, there are people who are BRAVE ENOUGH TO LOOK no matter what and stay on this journey. Our stories are different, but we are all fighting hard battles. I refuse to hide this little light under a bushel. If even one person finds their way with this light (and maybe the one person will only be me) then taking the ugly beautiful snapshots of this journey of dying to self and living to Christ will be worth it.

Today, be brave. Look straight into someone's hurt and tell them you will sit awhile. It could save them . . . or even you. It's intimate work. BE BRAVE.

(Photo property of Annie Leibovitz, Susan Sontag leaving Seattle by air ambulance with Annie by her side.  2005)

Monday, March 10, 2014

Not health, but healing . . . not the end, but it is the road

This life therefore is not righteousness, but growth in righteousness, not health, but healing, not being but becoming, not rest but exercise. We are not yet what we shall be, but we are growing toward it, the process is not yet finished, but it is going on, this is not the end, but it is the road. All does not yet gleam in glory, but all is being purified. ~Martin Luther

As promised, I am writing a quick update from the dark of our hotel room.  Danica's MRI today went very well.  She did wonderful with her anesthesia.  The doctor noted there was a bunch of green mucus when they pulled the tube, and we filed that away as something a little odd since Danica hasn't really been sick. Dr. Crone was thrilled with Danica's brain scans.  Her Chiari is tucked neatly in the cerebellar sling, and she has beautiful cerebral spinal fluid flow to her brain.  We talked a little about how really remarkable her healing is.  It stops you in your tracks when so much of your life is about a little part of the brain in the back of the skull and finally you see it there, safe and sound.  Danica's scans did show a completely blocked left sinus.  Most of us would be howling in pain if our sinuses looked this bad.  The radiology report used scary words like "acute" and "diseased."  Dr. Crone suggested antibiotics right away and then an ENT consult.  Our loving primary care doctor took my call and phoned in a prescription to a pharmacy here right away.  She has been having nosebleeds and other mild symptoms we didn't get too frantic about. We are so thankful for the timing of this MRI or this infection could have gone on for weeks or longer. Please pray she will have healing with the medicine we are trying.  

Tomorrow we head to orthopedics to look at her fusion.  When we are settled back in at home I will sum up.  Thank you so much for all your love.  She is healing, and it is not the end, but it is our road.  

Sunday, March 9, 2014

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 35th 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.  

Saturday, March 1, 2014

Where a personal retreat begins

"And still, after all this time, 
the Sun has never said to the Earth, 
'You owe me.' 
Look what happens with love like that. 
It lights up the sky."  Rumi

Just a little post.  I have an entire handwritten journal of experiences from my week away in Tucson, and I will slowly unearth and share them, but today I read this Rumi and thought of my husband Dan and how like his love this analogy is.

Most women I know would never consider leaving their families for a few days or a week or longer to spend time in retreat, and their homes and support systems are not arranged for this. They grab a girl's night or spa day or maybe a weekend away but usually to connect with others in some way.  I was completely shocked at how many people I encountered this past week who used the word,"BRAVE", to describe the trip I took. I've thought about this.  It felt natural to me. I will always need this kind of time to be okay.  I have since I was a child.  It's just been oh so long since I could really do this in any way besides a hospital visit.  I have always joked it takes a new surgery to get a "vacation."  I came so close to not going because of my unexpected shunt revision the week before and the Providential push to "flee" was unmistakable.

I have a man who loves me so dearly he completely championed this trip in every single way.  There is no tit for tat in his mind. He has only ever loved me so dearly.  He sent me texts reminding me to "BREATHE."  When he knew how bad the weather would be getting this weekend he called and told me to stay, which I could not do realistically because of finances and the ache in my heart for my family and dog, but he wanted it for me, no matter how much they would have to give up because he could hear the Monica he fell in love with shining through the calls.  Not once did his missing me or the girls missing me become a point of guilt.  I felt so free to completely enjoy because of the selfless love he gives and promotes.  Last night we were finally able to sit on the couch and look one another in the eye and scratch the surface about my time away.  The pressure was building here, and I was already clutching my head.  Less than 24 hours home, and I was in crazy pain.  He said to me he cannot imagine his life without me.  He will go anywhere.  He will do anything.  He only wants the best life for this other half of his body who is bedridden and often emotionally and spiritually barely breathing in this Midwest state near Lake Erie.

I don't know where all this will lead.  The individual stories of my week, especially the people I met and the healing, are mind boggling. These things just don't happen to "normal" people and still over and over I have this beacon of Grace and kindness cushioning my pain and struggle every step I take.  Our family is more keenly aware of ALL this than ever before.  Today I filled out the girl's school re-enrollment forms and paid bills and opened the first new ones from my latest surgery and filed them away.  Delaney searched the internet for homes in Arizona, because she wants her mom back too. Danica is confused by all this crazy talk of leaving an entire life because of clouds and storms and pain. This is all she has known.  We had one of our family group hugs and in that moment we could all feel the sureness of how being together is home and allowing for the possibilities is our only hope.

I'm loved.  For nothing I've done.  For nothing I could possibly do.  He sacrifices.  He cherishes.  He only wants good for me all the days of my life.  This is my Christ.  This is my Dan.

Look what happens with love like that.

I'm saved.