Tuesday, August 27, 2013

Hesed. Help my unbelief.

I know most of you read here for some kind of real update on my health and our family.  I find those posts the hardest to write.  So, here's a kind've short version, and then I'll share a piece of my heart.  

I am two weeks and one day out from my surgery to remove my fusion hardware from my skull base and neck in Maryland. The surgery went well.  Like always, getting a tube down my throat was the hardest part, and I got a big old fat lip to show for it.  When the anesthesiologist came in to meet me that morning I reminded him he almost took out my vocal cords for my tethered cord surgery.  He was SURE he would have remembered that so he had someone go down to a vault of medical records (I mean REAL books) and found my chart. Sure enough, it took him five horrible tries then.  He was super excited about the prospect of getting another chance especially since my TMJ has shifted recently.  Dear Dr. H came and prayed.  It is a humble honor to be blessed by this man who gives every bit of his knowledge and strength to God's glory.  I came out smiling but really wigged out about my collagen looking lip.  I did well in the hospital on pain medications and was in good spirits.  Of course, getting your head and neck cut open hurts, but it hurts so much less than before the surgery.  The pain that made me need the surgery was different in a way that makes post op like an exhale for me.  In almost all my "situations" (fifteen now if you're counting) I've come out knowing something horrible was excised or something broken was fixed.  I can move on with all the other really annoying stuff involved, because I made a choice to take a step towards a better life.  That's what this is.  Every single day is in my mind the effort it takes to not give up and keep hoping upon hope.  In addition to the hardware issue there was a bone spur that had not fully fused.  YES!  This had to be what I knew was grinding and clicking over there on the right side.

One of the things common with EDS patients following surgery is adrenal failure.  We are even given doses of steroids before we even get into trouble.  Following my brain decompression and fusion in November of 2011 I did have a pretty serious failure and needed long term treatment with several steroid medications.  In the hospital this time I was being given IV drugs and they were drawing blood each morning to check my levels. They had not gone up at time of discharge, but I was pretty antsy to get out of there and took the prescription of steroids and didn't even really talk much at all about the endocrinology stuff.  I don't understand endocrinology and throw in the EDS part which  makes it more complicated.  I have literally been functioning on "fight or flight" since May of 2009 when Danica began her symptoms.  It figures I'm one stressed out lady most of the time. I had also been going through what I explained here in several previous posts as huge adrenaline surges prior to and between my Cleveland Clinic surgery and this one.  I had the big Maryland trip by myself and was sick and doing all the nesting things I do before surgeries.  (That sounds so crazy to really have a pre-surgery list that has applied so many times you use it as a standard.)

Finding out my wallet was stolen at our last stop on the turnpike just happened to be the thing that pushed me over the edge.  It could have been anything else I guess, but I felt so violated.  The cash I had was stolen. A book of Dan's checks, my checks, debit cards, insurance, id . . . I was angry and sick and so unbelievably overwhelmed.  Most of all I was too sick to deal with the phone calls and the run around and the details of cancelling and restarting and getting new.  I wanted someone to do it for me but, of course, these kinds of things only work one way.  I also had waited, calling the turnpike manager and Panera thinking someone would be the good and turn it in.  Instead I had allowed time to pass for fraud to happen. These people were up to no good.  Oh, and I keep a little talisman in my change purse, and I loved my wallet.  After making my way through all that I was really done for and then came school . . .

By Wednesday night I was so shaky, so sweaty, so cold, so fuzzy and nonsensical, I knew something was not right.  My neck had been doing GREAT, so I was not taking much additional medication for pain at all. This felt like I was crashing.  I fainted.  I chattered and shook.  Dan came home and was doing his Dan things, and I came out of the bathroom white as a ghost with a bag and said, "I'm going to the hospital."

Hindsight is 20/20.  I should have called 911.  I get that.  But I didn't feel like my family could SEE me.  this happens in situations when people have chronic health conditions all the time.  Everyone around, especially the people who love the patient the most, are themselves too burnt out to recognize big changes in in someone's behavior or condition.  Dan was shut down.  God bless this man.  He was doing everything. Danica was to begin kindergarten the next day.  He is trying to do a great job at his employer and not carry this mess over there.  He feels helpless when it comes to the financial strain.  He wants to be "my person" but honestly he just can't some of the time. We get that.  I get that.  So, that is why I got in the car and drove to the little ER in Green alone.

Fast forward because I'm worn out and this isn't short at all!  My dear doctor showed up in the night to be my advocate at the ER.  STOP. Read that again.  It's so rare.  She has been a guidepost on this journey that I would not have lived through without.  Tracks up and down my arms from failed IV attempts.  A med list a mile long. Shaking and sweating and crying.  An ER doctor who was so pompous I thought I would throw up at first introduction.  And then she was there.  She was the authority needed to validate what a sick girl I am and all I've been through and yes, how crazy it sounds.  She sat and talked to me and made me laugh out loud.  She always makes me laugh.  It was quickly decided to send me by ambulance to Akron City where a few good endocrinologist doctors could see me and try to help.

I know you are dying to hear my funny hospital stories, but I mostly just want to say I hate hospitals. The people who were brave enough to come visit me are angels, and I thank you.  I have massive anxiety issues with nights in hospitals for very good reasons.  (Think seven weeks of hospitalization when I was pregnant with Danica.)  By Saturday they had switched me to oral steroids and again, even though my levels weren't rising, and I felt very badly I wanted to come home and sleep.  I took a shower, my head hit my pillow, and I woke up at 1 pm on Sunday.  Dan and the girls had already been to church and back.  I was that tired!  We doubled my dose again today, and I have more doctors on my team and trying to help.  I'm thinking if just a few thousand of these dollars were spent on a little place by the sea for this woman of "weak constitution" we might actually build some cortisol! (I'm using too many exclamation points so it's time to wrap this up!)

I don't really know what day it is today.  I totally thought someone was bringing us a meal and at 5:20 pm realized it was Tuesday.  Thank goodness mama ran to Panera to save the day.  I am in bed or my Nest chair and that is all.  I thought I was weak before, but it was nothing compared to this.  I had a wheelchair delivered yesterday, and it cut me deep.  I can't really walk around anywhere.  Still, the need to look out and hope for a life even in this body at this time is a huge realization.  God has been speaking to me in His word and through people and prayer, and I almost think I've touched the tip of something huge, like a real surrender surviving right along side my endless fight.

I want to tell you about a few very dear people and some little physical tokens that are gifts but so much more and some cards and letters I've been getting that have pure power in them for someone like me. I'll save all that for another post.  I guess I just want to remind the many, many of you who still come over to our plain old blogger template site created so long ago to just share about our daughter, Danica, and Chiari and our little family how big a thing it is you keep meeting us here.  I peck away notes about our believing and yet begging for help with so much unbelief, and you have shown us more than just passing love.  It is Hesed, the Hebrew word for steady marital fidelity or COVENANT LOVE.  This is no small thing, my friends. Perhaps bravest of you all are those who continue to pray for our unbelief.  People say how strong and inspirational we are but really this is just a painful privilege to get so close to the inner room you can almost touch His humanity.  This gets harder not easier.  I mean that.  The years have taken such a toll.  But there is joy in the reward.  I believe.  We believe.

I read in Lamentations 3 today.

Hesed.  Unfailing love.  Steadfast.  I have to believe.

I am the man who has seen affliction
under the rod of his wrath;
he has driven and brought me
into darkness without any light;
surely against me he turns his hand
again and again the whole day long.

He has made my flesh and my skin waste away;
he has broken my bones;
he has besieged and enveloped me
with bitterness and tribulation;
he has made me dwell in darkness
like the dead of long ago.

He has walled me about so that I cannot escape;
he has made my chains heavy;
though I call and cry for help,
he shuts out my prayer;
he has blocked my ways with blocks of stones;
he has made my paths crooked.

He is a bear lying in wait for me,
a lion in hiding;
he turned aside my steps and tore me to pieces;
he has made me desolate;
he bent his bow and set me
as a target for his arrow.

He drove into my kidneys
the arrows of his quiver;
I have become the laughingstock of all peoples,
the object of their taunts all day long.
He has filled me with bitterness;
he has sated me with wormwood.

He has made my teeth grind on gravel
and made me cower in ashes;
my soul is bereft of peace;
I have forgotten what happiness is;
so I say, “My endurance has perished;
so has my hope from the Lord.”

Remember my affliction and my wanderings,
the wormwood and the gall!
My soul continually remembers it
and is bowed down within me.

But this I call to mind,
and therefore I have hope:

The steadfast love of the Lord never ceases
His mercies never come to an end;
they are new every morning;
great is your faithfulness.

“The Lord is my portion,” says my soul,
“therefore I will hope in him.”
The Lord is good to those who wait for him,
to the soul who seeks him.
It is good that one should wait quietly
for the salvation of the Lord.
It is good for a man that he bear
the yoke in his youth.
Let him sit alone in silence
when it is laid on him;
let him put his mouth in the dust—
there may yet be hope;
let him give his cheek to the one who strikes,
and let him be filled with insults.

For the Lord will not
cast off forever,
but, though he causes grief, he will have compassion
according to the abundance of his steadfast love;
for he does not afflict from his heart
or grieve the children of men.

I carry this gift with me in my belief and unbelief.  This beautiful new song by Audrey Assad has been on replay here.  Every word holds weight. 

Wednesday, August 21, 2013

All moments are key moments, with or without instagram

It's quiet here this afternoon.  There is the sound of a large airplane overhead because the flight patterns for Akron-Canton are often directly above our neighborhood.  We've lived near airports as big as Dulles and as small as Leesburg, Virginia and Wadsworth, Ohio and this "noise" comforts me like living near a train during my childhood once did.  It gives a rhythm to my day I'm never really thinking about but that guides me through.  There are birds outside my window in some kind of chirping duel.  It makes me chuckle because I think I know them personally now, my little winged friends who find refuge in feeding condos I have so lovingly developed around my windows in hopes of glimpses into their simple but brilliant lives.  He cares for them.  How much more does He care for me?  There are also several doves who have been cooing love songs to me in these late summer afternoons.  I find them sleeping near the corners of our home. There is a steady drip from the girl's bathtub faucet that is so bothersome all other pleasure seems cancelled out by this repetitive sound.  It's a metaphor for what living in my brain is like most of the time.  No matter what good I am given there is a constant pain muffling the fullness I cannot help but feel.  Maybe I could never survive the greatness of it all, and this is my safety net.  I understand for sure there are people who live entire lives who aren't able to hear these little things or at least never pay attention to them even once.  I know God made me different from first breath . . . from first day . . . for some reason.

Social media has been a beautiful way of connecting me from this bed to an outside world of friends and family and even strangers who become family because we share a strange genetic code and similar lives of suffering. Usually I am in love with watching each of you share your lives in snapshots and words.  I have almost made complete peace with the difference  between your world and mine.  As my "real life" friendships have disappeared slowly over the past few years I know in part it is because people feel so incredibly uncomfortable with putting their happiness and vacations and marathons and zoo trips and even just a walk at the park next to my life.  It's unfair, and it really is easier not to have to draw any comparison.  I have learned an important lesson of not weighing my space against yours.  It's so different it wouldn't even make sense to talk about them in the same vein any more.  But, I'm desperate to share in all your good and even your bad.  When you see me I may not want to talk about me being sick at all.  I want to hear about your son's potty training and your new bathroom remodel and the dinner you had out last week.  I want to know what trip you are planning and how your heart really is.  I love to hear about your work.  Do you know how much I miss being part of an organization and managing projects and accomplishing creative things on a daily basis?  I don't want you to feel guilty you bought a new $300 purse when you know I can barely pay for my prescriptions. I want to see your purse!  Your car needing a new starter is a huge burden for your family and a skin biopsy for a mole is still something I'd like to pray about and care about with you.

I have to admit I am not scrolling much through facebook the past day or so.  There are still a few times a year when it hurts.  It just plain hurts to see so many milestone smiles.  Delaney began sixth grade yesterday with no mom to kiss her on the forehead and pray her off to school.  No one snapped a picture of her in her perfectly ten, almost eleven years of beauty.  Her momma was drugged here in bed.  Even if I had woken up I would not have been able to scrape my self to any kind of enthusiasm she deserves.  Another day with a mom whose neck is cut open again.  Another beginning of a school year where she'll explain why I'm not there for parent-teacher open house or be involved in the PTF or sign up for fruit and bagels.  She handles this with grace.  We talk about how it feels and also how we hope it will get better.  Maybe next year it will be better.

Today was a dose of reality for me.  Danica had kindergarten preview at 10 am.  My dear angel planned to pick us up at 945.  The door bell rang and Twixie barked and my little Danica who had been up for hours since Dan and Laney left this morning had a pop tart feast in the sun room watching cartoons and playing Groovy Girls.  I pulled myself out of bed to realize we were supposed to be at school.  This was the beginning of Danica's school life.  This deserved a picture and a caption and a smile.  Shaky and sad and so wanting to just not do it at all I pulled my hair in a clip.  I wiped my face with a baby wipe and pulled on clothes.  Five pairs of jeans later I realize the steroids are in fact some kind of concoction born of the devil.  I get my fattest pair of old lady dress jeans on with a jog bra, a tshirt and scarf to try to cover up my hideous neck because I had no time to bandage it and we left.  Danica was supposed to have a nap blanket and a buddy.  The dog ate a few of her new crayons.  I'm not sure how she will survive without a yellow and blue crayon.  Forget it all.  I have to keep standing up.  Let's go.  Here's the thing.  Any other woman picking me up would have made me crumble in shame because they would not have known how to react to this scene. This woman made me move forward and do all this without talking about it.  She could see my wide eyed overwhelmed look entering the building.  She could sense my intense fear of getting jostled in the halls.  She knew how each step was hurting me.  The little kid chair meant for parents while the kids sat on the circle mat was painful for me, but I didn't want to stand either.  After some songs Danica's teacher announced the children were going out to recess while she met with the parents.  My heart seized.  I don't have Danica's plan of physical restrictions written yet.  She can't just go out on this playground with her neck. What if someone hits her with a swing?  What if she's running on the blacktop and falls?  I should have been more ready.  I really had to leave.  I was sweating in that hot and cold way where you know you might collapse. Danica's dear friend's mom offered to take them for the afternoon to do something fun.  Thank you God for a village!  She would get the rest of my paperwork from the parent's meeting. My angel reminded me Danica is very self aware.  It will be okay on the playground today.  We ran into my mom in the hall, and she took me to see Laney for a minute.  I hugged my girl.  That's it. No pictures. No captions. Just a hug.

Tomorrow Danica will have her first full day of kindergarten.  I will make sure Dan physically removes me from my bed and into my chair for coffee.  I will kiss them both goodbye and pray with them.  I will get ready and head to see an endocrinologist.  Maybe, just maybe someone can help me with this adrenal nightmare.  A week ago I was in the hospital.  I had someone cut open my head and neck and remove big pieces of metal from bone and sew me back up.  A month ago I was in the hospital.  I had someone cut me four places and put a camera in my belly button and remove disease from my entire abdomen and pelvis.

Every single morning I wake up, and I think this is the first day of the rest of my life.  Be better today.  Do something kinder today.  Pray for someone on your knees today.  Walk across broken glass and then make art with incarnadine.  Pay attention.  Listen.  Do you hear it? The details He created for us to notice ARE the life.  The soul not one other person might carry today is the one you were meant to love and save.  I have tattered quotes everywhere from years of scratching my way to find more truth about how to grab the most important moments.  I found it in an old book last night on an aging not so sticky note,

“Listen to your life. See it for the fathomless mystery it is. In the boredom and pain of it, no less than in the excitement and gladness: touch, taste, smell your way to the holy and hidden heart of it, because in the last analysis all moments are key moments, and life itself is grace.” ― Frederick Buechner, Now and Then: A Memoir of Vocation

Thank you God for every moment.  Today, with no photos of my girls in sweet outfits headed for sharp pencils and fresh notebooks, You gave us all the amazing ways you really created us to sense the heart of life.  Our key moments sing out grace.  It's all grace, God.  Help us listen more closely to this life, I pray.

Sunday, August 18, 2013

A woman who came close and made all the difference

I have seen them in cities, and in my own neighborhood,
nor could I touch them with the magic that they crave
to be unbroken. Then, I myself, lonely,
said hello to good fortune.  Someone
came along and lingered and little by little
became everything that makes the difference.
Oh, I wish such good luck
to everyone. How beautiful it is to be unbroken."  Mary Oliver

It's a quiet morning here because Dan has taken the girls to church.  I woke up locked in my room. My neck doesn't move at first when my eyes open.  I remember I had surgery, and I need to heal today. This is what Sunday looks like for me.  Healing is my one job.  I call out to have Dan bring me coffee. Normally I would go out to my nest chair and drink it while everyone else comes to life around me. Twix will crawl into my lap for snuggles and then Danica takes a turn.  Today I can't seem to move.  I call Dan again to please come and get out certain pills for me to take that may raise my cortisol level, help with pain and also loosen up my poor neck.  He seems annoyed.  He doesn't ask me how I slept, although I ask him, and he doesn't ask me if I need something to eat or nibble on before I swallow six super strong pills on an empty stomach.  It doesn't even cross his mind.  I don't ask.  Since I've been home it is much like other surgeries.  I am put into my room with the door shut.  I think my family looks at it as doing me a favor.  The kids jiggle the bed which hurts my neck.  They are loud and silly. Mostly because of the pain and meds too much input sets me off. Still, I have missed them incredibly and being alone hurts in the worst way.  As they all leave for church the attitude is negative.  I asked Delaney to read me Psalm 37 out loud.  It's one of my favorites.  All I can feel is this rope of bad energy tightening around me.  The house is a mess.  As soon as they leave I cry for ten minutes straight.  You know the kind of sobbing where you are just gross snot pillow soaked blotchy face and chest heaving crying?  I am given a week in Maryland  and that is it.  I have to be better. Tomorrow Dan will go to work.  I will be here alone with my girls. Delaney starts school Tuesday.  Wednesday Danica has kindergarten preview and Thursday they will both be back full time. In between here I am supposed to just be mom. I'm supposed to lift up this neck and do all the things people say are stupid and careless to do following this surgery but there is no one else to do them.  I am not supposed to move my neck in flexion or extension for a month.  In other words, hold very still.  Aside from the surgery where I went away to heal at the lake house this is how it has been.  My family can barely scrape together enough time off and energy to do the mom is in the hospital thing.  When my ride dropped me off yesterday my dad was waiting with his keys to leave.  I asked him to please wait until Dan got home. I haven't heard from my mom at all.  I just can't be alone yet.  Dan does not function without me.  He is angry at this situation.  I get this.  It's maddening.  But I wonder if anyone is thinking about what it must feel like to be in this body and mind and soul.  Do you know what incredible shame I feel to be causing all this over and over again?  He cannot come and sit with me and talk to me about how I am feeling. Even in the hospital he sat there the entire day after my surgery saying nothing.  I felt so insanely alone and guilty and wanting to just let him off the hook for all of this.  I always want to say to him, "You can run.  It's okay.  I would totally understand."  This surgery is huge. It's a big deal.  For me, even more than the physical, it's a mental and spiritual choice I made to try to be better.  I did this only four weeks after a major abdominal and pelvic surgery.  I made this choice because my husband has been given an opportunity to perhaps take on a larger role at work, my girls start school this week  and last year I was completely bedridden when school began with another surgery and then another and it hurt Danica's adjustment greatly, and my mom is completely unavailable in every way this time of year. Her family is the 600+ students entering those doors Tuesday and my dad is preparing to go to China and India for a month and good grief, how much longer can things keep being about me?

Why after all these years of blogging am I saying these things now?

Because something changed me.

Ninety nine out of one hundred of you may feel like this comes across as ungrateful, but if you know me you understand my spirit is only full to overflowing for every ounce of love and support from every corner of the universe, especially the sacrifices my parents have made. Still, what was given to me this time was something I have needed since I was a child.  There has been a deep longing for a mother to care for me.  Someone to just focus on me and build relationship.  I have needed it so badly it is actually part of my sickness.  I know this.

There she was.

An angel.

A woman I didn't know personally until two weeks ago made this crazy offer.  I didn't really even think she was serious at first.  She offered to come after my surgery  and get me since Dan needed so desperately to work. Everyone who heard of this felt it was very strange.  She bravely drove with her own physical limitations from Ohio to Maryland.  She fed me.  She took me on a hilarious trip around the beltway for prescriptions.  She rubbed my neck and shoulders.  I don't think anyone had offered to touch me like that in months.  Did you know you need human touch to be okay?  I have been like an orphan tied to a crib. Failure to thrive.  I need to be touched. She listened to me.  I listened to her. Her daughter is sick with the same conditions I have.  I think perhaps the windows into one another's roles in all this was one of the greatest gifts.  We talked for hours and hours and only scratched the surface of what our souls could share.  I would fall asleep mid sentence and then wake and begin where we left off.  She would quietly slip off as if knowing I needed space and then appear just when I was needing her.  Gift.  Gift. Gift. When everything else falls away WE are gift.

Before Danica's major surgery in Cincinnati I wrote this post with a link to a song by Christa Wells that is truly my life song.  I am amazed when one of the "thousand things" shows up.  Christa's new CD "Feed Your Soul" was released on Tuesday, the day after my surgery. I downloaded all the songs first thing that morning, and they played over and over in my alone time in the hospital.  The song Come Close Now describes what Janet did for me.  (Please listen now.)

God, every single step of this arduous journey You have given me Dayenu.  It would have been enough. This present of knowing and being known makes me healed in places I thought would be broken until heaven. Even in my sadness today I understand I can only meet people where they are in their own journey.  All the rest You will care for perfectly as I burn.  Thank you for giving me someone to walk into my fire and just feel the heat of all this without shrinking back.

Do you know someone who is sitting in the burn today?  Go close. Sing. Hold them. Be there in the fire. It will make all the difference.

Sunday, August 11, 2013

Just this moment

I've been quiet because there are no words. Some of you have risked to be so close you can feel my heart in times like these. I treasure you.
I'm lying in my hotel bed with Dan listening to songs that make me cry in a good way. The air is thick with something you can only understand if you have been here . . . again and again. 
I was so close to happiness this weekend. I hope you know this is something completely different from joy and so rare for me. I walked on the sand with bare feet, listened to the waves and breathed an air that is pure. I held my husband's faithful hand. We ate good food. I think I had been starving myself. We drank life and made a toast to ALL this journey. The blessings and curses swirling around in our laughter and tears until we could see everyone of them as good. Do I really believe this? Yes. With all my heart. We watched the most magnificent sunset over the water last night, and I kept quoting Scripture about the heavens declaring His glory. I can't not bring Him into this. Into everything. We wandered into a little art gallery in Solomons, MD. Once again I was breathless. Oh, thank you God for the ideas and colors and soul of humans on canvas and in earthen vessels and print and pattern. I HAD been starving myself.

After all the achingly beautiful life we were given this weekend we began our drive back to Greenbelt.  Every mile seemed to make our hearts a little heavier.  Then, like so often here, the traffic stopped.  The ambulances and police came flying along side the road and then a medical helicopter overhead.  I began praying out loud for whoever was in the accident.  I could taste something so tragic just ahead.  Life on a beautiful summer Sunday afternoon and then an end.  When we finally came up on the accident I knew I was right.  

Every one of us holds just this moment.

I'm braver.  

We checked back into our hotel.  I called my sweet girls.  I held back the floodgates long enough to hear about their day and exchange our love messages.  I checked my email and facebook.  A dear one sends me these verses from Deuteronomy.  They make me think of the sunset last night.  

"There is no one like the God of Israel. He 

rides across the heavens to help you, across the skies in 

majestic splendor. The eternal God is your refuge, and 

his everlasting arms are under you."

I'm held.

Another message from a woman who has known me only a short time but in a strange way understands my heart like few ever have reminds me I am not becoming more broken but more whole in every way.  

Tomorrow, we will be at the hospital before 8 am.  After a bad IV during my scan on Friday I was told I really do need to have a PICC line for this surgery.  I will have a central line placed first and then go through preop.  My surgery is planned for 1030 am.  Dr. Henderson will cut open the back of my head and neck and literally unscrew the plate at the base of my neck and the two rods running down my vertebrae.  

Dan will update my facebook page and text the people who have asked.  Please pray for me.  Please ask others to pray Please pray for Dr. Henderson and all the staff who will be caring for me.  The details of my body and this surgery are delicate.  Please pray for my Dan.  I almost feel like I am supporting him tonight.  This is so very hard for him to be part of.  Some of his family will be coming to sit with him tomorrow and this makes me very glad.

Every one of us holds just this moment. 

My hope remains.