Refine Retreat and a lumbar puncture

I was supposed to be leaving right now for a spiritual retreat with approximately 30 ladies at Salt Fork Lodge.  I stepped out in huge faith a long time ago.  I registered, paid the money we didn't really have and committed myself to going no matter what.  

I am too sick to go.

I am not in church.  I haven't been for years.  I listen to sermons.  I sing praise.  I am cared for by a church body.  I have relationships that hold me accountable and encourage me in my faith.  I spend time in the Word and prayer daily. Still, there has been a huge void.  I need to learn how to be in real community again.  I need to be included in sacrament and prayer and worship.  I was praying so desperately this retreat would be a fresh beginning for me in my spiritual life.  I shared some of my health issues with the retreat planner, especially my mast cell reactions to perfumes, and she lovingly asked all the women to refrain from wearing any scents for the weekend so I could be there with them. While others had roommates, I made a plan to stay alone to allow for rest and breaks as needed.  I have prayed hundreds of prayers over this upcoming weekend and the ladies who will attend. My dear Christa Wells and Nicole Witt will be there all weekend to lead worship.  I wanted to go so badly I thought God wanted me to go too.

He said "No".

This flare began several weeks ago really but exploded last weekend.  I am the sickest I have been in months, and I don't know why.  I am heading to the hospital for a therapeutic lumbar puncture to test my pressure but also run tests on my cerebral spinal fluid.  My neurosurgeon is always alongside in this journey.  My angel general practitioner is here helping order things and communicating his orders.

Delaney and my mom are heading to West Virginia for the weekend to be with my sister and her family.  I am so happy Delaney is getting this break.  She loves it there and thinks of my sister, Rochelle, as a second mom and feels comfortable in their home and in their lives.   Dan and Danica were planning a together weekend since I was also going to be away, so it won't matter much if I'm at the hospital or here in bed.  So often, I have done these grueling hospital tests alone.  I know most people can't imagine it, but this is what has worked for our family so that the girls are always taken care of and never feeling abandoned at some random person's home just so I can have someone sitting there with me.  It's okay.  For some reason I have been less strong, more emotional and more frantic during this flare.  It could be because I experienced a week of near perfect health in Arizona, and I can't believe I am back to this.  I am trying to look at that week as exactly what I begged God for.  I would often say, "If I could just have one week to be healthy . . ."  I wish my family had been able to see me so well.

This weekend's retreat is called "REFINE."  My plan to attend is a perfect example of how you can "feel" like the Spirit is leading you to do something, but the providence of God will always take you where He can do the most good and get the most glory.  Won't you pray for me in that vein?  Please pray for my husband who is so weary of all this I can see it breaking him and still he warriors beside me and sends me emails encouraging me to keep fighting.  From this morning, "Get stuff done.  Take chances.  Try everything."

My doctors and I still believe there is some form of autoimmune encephalitis attacking my brain and body.  These cycles of intense symptoms that leave me unable to function normally are getting worse in many respects.  Dr. Henderson does not believe the pressure I'm feeling is shunt failure but rather pressure cause from swelling of my brain.  The neurological, the systemic physical and the psychological issues compound how difficult all this is to diagnose and treat and more specifically how hard it is to get insurance to cover at least part of the treatment.

Will you all please pray for the lumbar puncture today?  Please pray I will have caring staff, skilled hands and the tap will not be bloody or with a leak?  Please pray for my doctors to know where to send me for the next stage in treatment and for the extreme cost of this kind of treatment to in some ways be approved and covered.  Please pray I will have a calm spirit, especially while lying there so still after.  Ask God to continue to be near as He refines me through more pain and suffering.

Our Hope remains.

"So that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ."  I Peter 1:7

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)

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.  

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.  

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.

Dear Monica (a love letter from my Dan) and surgery update

I'm in bed in my hotel room in Maryland resting after my shunt revision surgery today.  I am so thankful  and after the relief my shunt had brought me since October last year I knew I could not go back to living with such intense suffering. Today was affirmation just how bad my pressure had become.  When Dr. H took me in and pulled a pressure reading from my shunt prior to making an incision it was 30.  It should be 12-15 to be comfortable. When I came out of anesthesia I could see again out of my right eye and had no headache. I have the old shunt and valve in a little plastic bag to bring home as a souvenir.  My incision site is already very black and blue.  The pain is bad as well, but post op pain is hopeful pain.  In the bed next to me is my friend, Janet.  This trip would likely not have been possible without her sacrifice to bring me and stay with me.  I am overwhelmed by the light and love she brings to my life.  Dare I say this was a good day.

My family is back in Ohio.  I miss them desperately.  Monday was Dan and I's 13th anniversary and today is Valentine's Day.  Dan and I did not do gifts for one another.  Another surgery and trip means more financial pressure.  Instead, my husband wrote the most incredible letter to the girls and I as a gift.  I cannot describe how perfect it is to have your husband express his heart in your exact love language.  I want to share it here because more than all the posts I could make to try to explain our marriage and family, his words say it all.  Thank you for praying me me today.  Thank you for lifting up my dear man and girls while I am away.  We are changed by your love for us.

To share with our girls

Happy Anniversary 2014.  Thirteen years and counting.

I love that we have two girls separated by five years so they will enjoy their own lifestyles and experiences.

I love how steadfast and independent our first born is and how she is already a very good dreamer. NEVER STOP DREAMING, DELANEY.  She gets this from me.

I love how our youngest has the most caring heart I've ever witnessed.  Danica gets this from you. I am the baby as well, and I believe we mark our lives by watching the youngest grow older.

I love that Delaney and Danica will keep surpassing their dreams and always care for one another. 

I love that you have a "never give up" mentality when faced with obstacles.  I knew you were a fighter just days after we met.  I think of you every day and night.  Even though life's complications get in the way, I will always love you and care for you.  Our two girls are still young.  They are young enough that remembering these difficult days may be overshadowed by the happiness and joy we as a family can achieve in the near future when they better understand our situation.

I believe time passes quickly so as a family we can grow closer together through trying times.

I know I am a very blessed man.

To express how I feel about you best I always say I cannot wait to retire so I can spend more time with my my wife.

LOVE MY GIRLS,
Dan

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)