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)

Laundry detergent madness and my one defense

I've felt called to a quietness of late.  Not writing here has been good for me.  I realized last night when I posted a facebook status about my horrible mast cell attack there is still such a caring group of friends who love me personally and are continuing to pray and offer support no matter how long this road.  I am so grateful for you.  I know there are also many in my circle who are walking through similar struggles and want to find anyone at all who can relate and understand.  This is a better place than social media to try to share the gruesome details.  I will try to document as closely as possible what happened. What I describe is not something unusual for me but the severity of the episode made it more frightening and leaves me weak and wondering today.

I had a relatively good day yesterday.  I had a very sick week for a few reasons, but I woke feeling stronger and less sick to my stomach.  I did not have a headache and because I'm still taking steroids my joints were doing well.  I didn't risk this improvement by planning to go anywhere. Delaney was having a friend over to spend the night. Dan was working on projects at home. Danica was playing.  I spent time reading and wrote some.  I tidied up the house.  I was not feeling particularly anxious or overstimulated.  Dan did a lovely thing by painting the one photo gallery wall in our living room a textured robin's egg blue color.  He did it to cheer me up.  I spend hours in the living room each day, and I so wanted a hint of the hope of spring.  I have been wrestling with depression.  This is an Ohio January thing made worse by my being home bound most of the time and the layer of physical pain and chronic health issues I live with.  I manage my depression by understanding it.  I take it to God daily.  I also take medication, see a wonderful counselor who helps me with behavioral responses and cling to the good in my life.  I was actively doing this yesterday.  If you read my earlier facebook post I was literally overflowing with gratitude for our home and the peace we have here. I do think the paint, which didn't bother me greatly but did cause me to move into my room with the door shut, began to cause an early histamine response laying the groundwork for the later event.

Innocently enough my husband had gone to the store earlier and chosen a different laundry detergent than usual.  Laundry has been a trigger for me for years.  I cannot tolerate chlorine bleach smell or floral dryer sheets or any of the mountain spring scents they add to almost everything.  I NEED FREE AND CLEAR. PERIOD. Dan sniffed this and thought it was "fresh" and wouldn't be a problem.  Around 4:45 pm he began a load, and I had walked over to the laundry room for some reason.  I saw the red bottle. He tried to explain his reasoning for buying it.  He took the cap off, and it happened.  I smelled it. It rushed to my brain instantly. I began to rant and rave about how it had to go.  I needed it out of the house immediately.  He couldn't use it.  He tossed it in the trash can there, but the lid wasn't screwed on correctly and detergent spilled in my basket and all over.  I could feel the fever response rush up my body and my face become so hot and red.  It was in my nose and in my head now.  My throat closed up.  My heart was pounding.  I was shouting at him. I rushed to the front closet, threw on my boots and gloves and a scarf and set out in the neighborhood in the dark.  I was crying and walking faster than I've walked in years. I kept trying to breathe in fresh air. The further I got from our house the more afraid I felt.  I could feel the paralyzing weakness coming on.  This always happens.  I pushed my muscles to make it home.  I went in my room and locked the door, swallowed a benadryl and put earbuds in with my "demon" fighting music playing and my head between pillows.  My body froze and tears just kept rolling down my face until my pillow was soaked.  Racing thoughts of anger and shame and fear flooded me.  "My husband deserves a healthy wife. He must hate me.  He must hate his life because of me. My girls will only remember me like this.  My daughter's friend shouldn't know about this.  What if I never get any better?  Why even live if everything is making me this sick. I don't want to live like this. God, I don't want to live like this. Why have you brought me this far to leave me like this?"

After a good 40 minutes between the pillows with voices in my head and specific thoughts about wanting to die the second phase of physical illness took hold.  I was going to be sick.  I made my way into the bathroom and the chemicals had loosed my gastrointestinal tract into a full on release of anything and everything normally moving through.  I glimpsed myself in the mirror and more self loathing took hold.  My eyes were wildly dilated.  My face was bright red and blotchy and on fire.  My mouth moving silent words over and over.  My chant. "God, help me.  God, I'm so sick.  God help me."  Back and forth from the bathroom to my bed like a wrung out washcloth I collapsed feeling the worst had passed.  I could literally barely move my body it was so weak.  Dan came in.  He was sorry.  It's the worst part when someone says that.  He knows it is real.  He's seen it too many times.  It just sucks.  What is there left to do?  I sobbed and sobbed.  Everything I had hoped and planned for this year seemed lost in this week and the attack was the nail in coffin.

For those of you who don't know what mast cells are I will share just a tiny description of what this disorder involves.  In my case it is one of a group of disorders that all intertwine creating havoc on an already broken system.  Once I have an attack then I am more and more prone to greater ones.  The Mayo Clinic describes systemic mastocytosis (mas-to-sy-TOE-sis) as a disorder caused by a genetic mutation that results in an excessive number of mast cells in your body. Mast cells normally help protect you from disease and aid in wound healing by releasing substances such as histamine and leukotrienes. But if you have systemic mastocytosis, excess mast cells can build up in your skin, around blood vessels, in your respiratory, gastrointestinal and urinary tracts, or in reproductive organs. When triggered, these mast cells release substances that can overwhelm your body and result in symptoms such as facial flushing, itching, a rapid heartbeat, abdominal cramps, lightheadedness or even loss of consciousness.  In just the past week and a half I have had horrible reactions to someone's perfume at the hospital, my husband's deoderant that he has worn for months but after my histamine levels had been raised from another trigger made this substance cause me to react and then the detergent.  I will be in a holding pattern now trying to avoid anything else that could push me to anaphylaxis.  I am so weak today.  I am so sick.  I feel stoned. Writing this has taken me hours because my head just isn't working. I can't seem to get words to go together right.  I am despondent.

This is my life.  There are no January resolutions or vision boards or hopeful verses that change the reality of this body.  It rages against all my best efforts to find some treatment or care to move me beyond these episodes.  My surgeries have helped me oh so much.  Still, I face these mountains.  I've had news from my extensive bloodwork ordered by the neurologist in New Jersey regarding PANS/PANDAS.  I have another call with him on Thursday to consider treatment options for the infections living inside me.  I know these mast cell issues are all tied up in my genetics, my immune system and every intricate part of my body.  I believe only my Creator sees the whole and understands every part.  He sees me as more than flesh and blood.  He formed me in secret when there was none of me.  Do I trust this now?  As I beg and plead for some release from my suffering and just a chance to step back into the real world from this prison, I have to trust this now more than ever.  He has written all my days.  Do I believe He is good? Do I rest in this goodness even when it seems so unclear?

My dear Christa Wells sings a song about God as our one defense.  I listened to it over and over as I laid here wracked with sadness and fear last night.

And I don't know how to climb out of this valley
I don't want to go back where I've been
But every time, you've laid yourself beside me
Your love my one defense
You are my defense...

My verse for this year is Psalm 91:4,

He will cover you with his feathers, 
and under his wings you will find refuge; 
his faithfulness will be your shield and rampart.

Resting beneath the feathers of His faithfulness today and ever hoping.

Snyder Hope at OneTrueMedia.com

Celebrating the Hope that can never disappoint today. We love each one of you who gather here to share in our lives. Because of Him we expect great things in 2014. Bless you.

Make a video - it's fun, easy and free!
www.onetruemedia.com

When you are tired of things that break

“You have played, 

(I think) 

And broke the toys you were fondest of, 

And are a little tired now; 

Tired of things that break, and— 

Just tired. 

So am I.”

― E.E. Cummings

An entire season of my life year after year dedicated to choosing and buying things makes me tired. I choose gifts for my children that will bring them enjoyment or meet their needs or encourage them to read and learn or be creative, but I know most of it will end up in a donate bin by next year, sit on a shelf collecting dust or simply become used up.  I wrap things for others I've carefully chosen as tokens of love or appreciation, but I still feel somewhat empty handing them anything besides my actual heart, my time, my "spoons", because I know this is what I truly want from others.  I want a piece of real life.  I'm so hungry for it.  I want experience.  I want to play.  I want to look into your eyes and know how you are.  I want to hear what your dreaming of this year and what your next step will be in making it come true. I'm tired of things that break.

When I was a little girl my mom used to encourage us to leave our comfort zones and make friends with people outside our four walls.  In our small world I'm pretty sure she meant the neighborhood kids who were quite tattered and had much less love than we did in their day to day. She would quote the old saying, "Make new friends, keep the old. One is silver, the other gold."  I love the connection I have with friends from my childhood.  It keeps me grounded.  It reminds me there are people who were there and remember the hours and days of youth much like I do.  We walked through frivolity and unbridled joy and trudged through angst and hurt, all to survive and become the people we are today.  Most of us have taken very different journeys spiritually and still by Grace we love the same God with all our hearts no matter how confusing the theology of our younger days made it to really know Him.  I had spent years of my life intentionally and unintentionally burning most of those bridges out of shame because of who I had become for a time and also thinking if I cut it all off it wouldn't be part of me anymore. Over the past almost seven years God has used these people the most to remind me there can be intense love and best intentions behind the worst life events.  They are the ones I feel safest with.  My friend Angie, who I have written about many times is the childhood friend I am closest with. Sometimes I think we share the same heart.  How dear she is.  She is my gold.   

Making new friends when you are mostly home bound is not easy.  I have a community of people online who share in my same disabilities and illness.  Several of these people have become like family to me. Still, I have little real fellowship with others except those who can slow enough to come here to me, leave their perfume behind, and sit on my couch and just BE together for an hour or so.  It was late summer this year when a women I've written about before, my dear Janet, took me to the airport before dawn and a friendship was born the likes of which I've not known before. Now, she comes, once a week to BE with me.  Knowing and being known by her is something God gave me at the perfect time, just days before the first of three major surgeries and an adrenal crisis. I never could have known to want a friend like she is to me.  She is silver.

This week I received gifts from one of my oldest and dearest friends, Angie, and my newest friend, Janet.  Two women who know my heart so well they gave me things that cannot break. From Janet, a little box full of little slips of paper.  In her script she wrote a year's worth of things we will do together.  This included little things, like a cup of coffee together and walking together on her morning path, and bigger thing like visiting art museums.  It is a precious box of intentional gifts of her time and energy to BE with me and most of all help me remember how to play and enjoy and choose life again, something I didn't mean to lose, but I somehow did through all my pain and suffering.  From Angie, two beautiful signs, hand painted with the names of places I hope to go this year.  They are my hometown of Staunton, Virginia, and the Duck/Corolla area of the Outer Banks of North Carolina.  She is not just hoping for me to be able to make these trips.  She is writing them down.  She is writing them in the biggest possible place to display.  She is speaking to me exactly how I hear.  "Moni, You can do this again.  You can travel for pleasure.  You can come and see your Blue Ridge.  It's only a day's drive.  Get in the car and come.  You can have a week with your family in a place you love like the beaches of North Carolina.  It is not impossible.  It will make you more well.  GO.  I'm stepping out in faith you will be well enough to GO."  I will hang these in my kitchen, and I will make plans, and I will go.  

We are so close to Bethlehem now.  I think of the wise men and their gifts that held meaning but most of all held their hopes and dreams for their Savior.  Things that could not break.  I wish this for you. Give something for Christmas that cannot be destroyed.  Encourage someone in their hopes and dreams.  Be specific with giving your time and friendship.  Oh how happy giving and receiving can be when it's tied to our hearts.  

Love languages and expectations

“…what fidelity is meant to protect is the possibility of moments when what we have chosen and what we desire are the same.”  -Wendell Berry, The Body and The Earth

Yesterday Dan was doing a little shopping online to try to fill my stocking on Christmas morning. He likes to think of his own creative ideas, and I am someone who likes to get the usual stocking things like socks, a toothbrush, lip balm, a pen, sticky notes.  In our family stockings are one of our favorite rituals and for Dan and I often the only gifts we buy one another in these lean years.  I said something to him about how much I would love a letter from him.  You see, I treasure hand written affirmation quite possibly more than anything else.  My own love language year round involves giving of small gifts often and written notes.  I know neither of these are the most common language for men, but I believe in a relationship it's important to share what we need or expect from one another.  So, I asked, and he rolled his eyes a little, and I felt a tiny bit sad.

This morning I woke much the same as any morning.  My body hurt so badly.  I moved oh so slowly from my bed to my "nest" chair in the living room.  My family understands the process I must follow to come out from my medication fog and begin to join into their activity. Every morning for as long as I can remember my husband has the kettle on and french press ready and brings me a cup of coffee just how I like it.  This morning was no different.  He set it on the table next to me and asked, "Honey are you feeling any better today?"  Then he headed back to flip some birthday cake pancakes he was making for the family breakfast.

I looked over at him and felt the biggest surge of love and gratitude. Service is his language to me. I don't need a single word written anywhere.  He pens this love moment by moment by caring for the girls and I.  He does laundry faithfully . . . every single day so there is never a back log.  He grocery shops every weekend.  He vacuums and loads and empties the dishwasher.  He works hard and now commutes much further to a job God has given him almost 6 years.  He doesn't make much money and much of it goes to our insurance premium, and he uses every possible day off in service to my health appointments and surgery and still when I ask him at night how his day was do you know he always answers the same.  "Lovely."  He doesn't have hobbies or really any friends outside our tiny circle.  He doesn't have toys like many men.  He is wholly dedicated to our family.

I was raised in a home with a dad who was also a theologian.  For a long time I had expectations about what a "spiritual leader" would look like.  As God brought me back to Himself during these painful years I sometimes wished Dan were other things.  I was wrong.  There is no other man in the world that could have or would have stayed like he has.  There is no other man who would have sacrificed all selfish ambition and pride to walk along side me in this journey.  I know for sure there is no other man who would have served so faithfully in the day to day.  This is Dan's love language.  This is his offering.  This is his calling and fulfillment in a world that screams something so different for most men.

My expectations are changed.  I am basking in Dan's love for me today.  I am grateful to God for giving us one another and keeping us together through challenge unspeakable.  I see Christ in my servant husband.  I will continue to leave him love notes and write blog posts and buy him small gifts, and he will make me a cup of coffee every morning, and we will know in the all the ways that matter most how blessed we are to have one another.  It's of course a mess over here sometimes because that's real life, but I find like in so many other important things it's the ritual and yes, the monotony I spoke of yesterday that shines the brightest to me now.  Day in and day out faithfulness is the greatest love language of all.

The place just right . . . in a valley of love and light

I'm sitting in our living room with the flicker of candle light watching the snow falling outside.  Dan and Danica are out playing in the fresh powder and Delaney is off with a friend to the Canton Ballet's Nutcracker matinee.  Despite this heavy storm I am completely clear headed and without any pressure or pain in my head or behind my right eye.  I could say it a thousand times and still you wouldn't be able to really know how every single minute I'm without that suffering I am healing.

My cousin posted this beautiful quote from Chesterton yesterday, and I gobbled it up because it so perfectly described how I have been feeling of late.

" . . . The thing I mean can be seen, for instance, in children, when they find some game or joke that they specially enjoy. A child kicks his legs rhythmically through excess, not absence, of life. Because children have abounding vitality, because they are in spirit fierce and free, therefore they want things repeated and unchanged. They always say, “Do it again”; and the grown-up person does it again until he is nearly dead. For grown-up people are not strong enough to exult in monotony. But perhaps God is strong enough to exult in monotony. It is possible that God says every morning, “Do it again” to the sun; and every evening, “Do it again” to the moon. It may not be automatic necessity that makes all daisies alike; it may be that God makes every daisy separately, but has never got tired of making them. It may be that He has the eternal appetite of infancy; for we have sinned and grown old, and our Father is younger than we. The repetition in Nature may not be a mere recurrence; it may be a theatrical ENCORE"

I have been like a child.  Everything is new and exciting.  Even the most mundane task is a privilege.  I am reborn.  My life is turning and turning with so much sameness, but it is all brilliant to me.  I was dead to so much before.  My family watched me dying to almost everything.  Now, they watch and laugh and cry as I grab the tiny and seemingly insignificant to the huge and oh so meaningful and shout, "Look at me.  Did you ever think I would be able to do it again?"

The snow today is one of these encores.  It is common enough in Ohio, and I had come to loathe it because even the forecast of a system would crush me.  I would hide in my bed crying and praying. I would swallow dilaudid and plead with God for release.  Today it looks like the miracle it is. Every flake as unique as you and I.  Our God, who cares infinitely about the details of nature surely cares that much more about the details of our lives.  Am I trusting Him now because He has taken this pain from me for a time?  Did His love change?  Did I do something good enough to earn this?  No.  I can say with all honesty the joy I feel now and change of heart and mind is exactly what I was pleading for.  His timing was right.  His provision was right.  If even one thing had gone differently or more quickly or with different people I would have missed out on some of the greatest gifts He was preparing to give me.

For those of us with chronic pain and "invisible illness" (although I'm not sure mine qualifies as unseen any more with all the scars I bear) we live on a razor sharp wire.  We rejoice in good days. There are no great days anymore.  I'm walking the tight rope now.  I'm out of bed and on my feet more which inflames other painful conditions.  I am bleeding again and my prolapse is as bad as it has ever been.  The cold and snow still cause every joint and every fiber of my entire body to hurt. Today my shoulder has "popped out" at least two dozen times trying to accomplish basic tasks like making beds and lunch and helping Danica get her snow clothes on.  The tubing in my back along my spinal cord is poking out and very sore.  I have been bending over to put the dog out or pick up or wrap a gift, and these mundane things do hurt.  They will always hurt.  Turning and turning I choose to grab the good.  Surrender is a daily task for me.  It grows up around a discipline of gratitude.  Focus on the gifts.  Don't take a minute for granted.  He will give you strength for the other because He says He will.  He always has.  He cannot lie.

This beautiful Alison Krauss and Yo-Yo Ma song, Simple Gifts, is on repeat and says it all.

Simple.
Free.
Where I want to be.
The place just right.
In a valley of love and light.
Bowing.
Bending.
Turning and turning til' we come round right.

Thank you God.