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.

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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.

Glorious Impossibles

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

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

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

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

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

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

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

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

Slow journey

"If, as Herod, we fill our lives with things, and again with things; if we consider ourselves so unimportant that we must fill every moment of our lives with action, when will we have the time to make the long, slow journey across the desert as did the Magi? Or sit and watch the stars as did the shepherds? Or brood over the coming of the child as did Mary? For each of us, there is a desert to travel. A star to discover. And a being within ourselves to bring to life." Author Unknown

Borrowed art, slow Grace and stars in our eyes

Star Song by Luci Shaw

We have been having
epiphanies like stars
all this year long.
And now, at its close,
when the planets
are shining through frost,
light runs like music
in the bones,
and the heart keeps rising
at the sound of any song.
An old magic flows
at the silver calling
of a bell,
rounding,
high and clear.
Falling.  Falling.
Sounding the death knell
of our old year,
telling the new appearing
of Christ, our Morning Star.

Now, burst,
all our bell throats!
Toll,
every clapper tongue!
Stun the still night.
Jesus himself gleams through
our high heart notes
(it is no fable).
It is he whose light
glistens in each song sung,
and in the true
coming together again
to the stable
of all of us: shepherds,
sages, his women and men,
common and faithful,
or wealthy and wise,
with carillon hearts,
and, suddenly, stars in our eyes.

If you've read here long or at my old blog you know I love Advent more than any other time of the year. The order of the liturgical season leading up to celebrating Christ's birth keeps my heart in a circle of never forgetting.  It reminds my soul continually how the plan for Redemption was THE only plan. Throughout the Old Testament there are the hints and guesses that grow into clear signs of who would come to save us.  I love spending an entire month so mindful of the miracle. Christmas is a big reflection of what God asks us to do with our lives all year long.  He wants us to watch and wait.  He wants us to draw near to the simple and humble and the human so we can really finally understand what a sacrifice God becoming man was and is.  It's Grace in slow motion, step by step to Bethlehem.

Dan and I had a much needed date night last night.  I felt well.  I did not have a headache.  We were together in such a "normal" way, and we were reminded it can be good again.  It IS good again.  For so long we have lived in a place of doubting this and not really knowing how to adjust our marriage.  The time I've spent not writing here I have been healing and living with my family and those close to me. There are a hundred moments I could have captured for you where something was being repaired or restored in the past month.  I didn't want to waste even a second of the time documenting, because it has felt fragile and unsure, like borrowing something we might not get to keep.  Holding things loosely is part of our nature now.  My eyes have been opened to this beautiful way to live.  It used to hurt.  Now it feels like an exhale.  I am lighter and floating just a little knowing I can bear so much pain and loss and not just survive but actually be transformed into something better . . . more like Him and less like this world.  I'm not clutching or striving right now.  Maybe it's because the bill collectors quit calling for the holiday weekend, but I hope it's something deeper and longer lasting too.  

Growing up in Staunton, Virginia our amazing public library had large reproduction art pieces that were framed, and you could check them out to hang in your home for awhile.  I was obsessed with decorating and design since I was a young child.  I was always wanting to make my space inspiring and beautiful.  My mom would let me check out the art from time to time.  My favorite was one of irises printed on a grass cloth type canvas framed in gold.  We didn't grow up with much actual art in our home.  There were cross stitch samplers of Bible verses and one big watercolor painting of my sister on a carousel hung over our couch.  That's about it.  I didn't have exposure to art through museums or my schoolwork either. It was just something that felt important to me like a good thread count and the right lighting.  It was something I was born hungry for like poetry and architecture.  It is something we all need and want at some level if we are honest with ourselves.  In many ways the place I grew up became the canvas I studied.  Watching the seasons change year after year in the Shenandoah Valley shapes your soul for beauty.  All art is born from the master artist, our Creator, and I was blessed to live in the bowels of one of His special studios for many years.

Thanksgiving and the month of December are a time for looking backward and forward.  As I play this long year in my mind one of my deepest blessings has been a friendship that came out of a strange and unexpected place.  It has grown into part of my healing so deeply I don't know if one would have been possible without the other.  We are different in many ways and kindred in just as many. This creates an honesty and perfect iron sharpening iron way of communicating that is rare. We found out early on we both have a love for all kinds of art and need beauty around us in our day to day to be okay.  Besides a whimsical collection from an Ohio watercolor artist Dan and I bought at the beach in North Carolina 2006, which we have refused to part with during all our losses, we don't own much meaningful art anymore. In our one year lived in and cherished home we have large walls with just empty space which is okay with us and especially me.  I don't want to hang things just to have something there.  Everything in my life now really should reflect meaning and sometimes the empty space is just good.  It's part of the waiting for restoration and healing.  

Not long after my hardware removal surgery, the second of three major surgeries in a row this fall, my new friend showed up on my doorstep holding a large piece of framed art to borrow.  She had been in my room and even spent time lying in bed with me when I was too sick to get up.  She could see I spent most of my hours turned on my left side facing a large blank wall.  This particular piece of art had been in her bedroom and brought her encouragement through pain. It's a stunningly painted forest with the richest colors creating a depth you have to trudge through. You have to explore it layer by layer until you reach this little patch of yellow, yes, light, at the very end of your journey.  She brought it on a day I felt so hopeless, so sick, so lost in the woods I could not imagine making it through.  She left the painting here for me to borrow.  We hung it on the big empty wall I face when I am in bed the sickest.  No matter what I could see the light.  I could move towards the light.  The painting changes depending on the day and the mood and yes, the light, and it has never looked exactly the same twice.  I am still caught off guard when I stop to consider it.  I still cry when I tell the story of how a little block of the purest shade of yellow somehow helps me believe it is going to be okay.  

Several weeks later my friend showed up with a religious piece to borrow.  It is in our living room over the mantel.  Dan and I sat enjoying our coffee this morning discussing this particular piece. Beyond the literal meaning we have our own interpretations.  The angel and light overshadow the struggle below of man.  It is a hopeful piece.  It came from an artist whose friend knew he was agnostic so he asked him to study Scripture and paint a series of work depicting Biblical stories in prayer of stirring his heart to come to see the truths he held dear.  I think I will need to return this piece after the holidays before I become too attached, but it has illuminated our simple holiday decorating and speaks to the spiritual journey we are on this and every Christmas season.  

Pulled by the tinsel and things and expectation of things I see the angel speaking to us glad tidings of great joy.  Sit down.  Be still. Listen to how this aching and hurting and waiting will unfold now. I know there were days and weeks and even months without a sign. You thought I had left you here without a Savior.  Your suffering and your broken bodies and hearts will be healed by His stripes.  A baby born of a virgin is just the beginning of the miracle.  You will be saved!  Do you believe?  Can Redemption happen so slowly it begins as a shoot from a stump?  Can it be as simple as a scene in a manger?  

Light a candle tonight.  
Take one step.  
He is coming.  
We have stars in our eyes.  

(Our family celebrates by lighting Advent candles daily instead of weekly.  We use the Advent journey handmade by Ann Voskamp's son, Caleb, which also allows you to add pieces and continue on through Lent to Easter.  We gather around each night and take turns reading and then we sing and pray.  I'm excited Danica is a reader this year too.  We've collected quite a few resources but still use the book A Family Advent: Keeping the Savior in the Season for our main readings.  I have been working through Ann's new Advent devotional book The Greatest Gift since it came out and have gifted it over and over already.  If you've never taken a daily Advent journey I would highly suggest this as a simple place to begin.  Many of you who have loved us and cared for us these years now ask me how you can bless us during this season.  My answer is simple.  We have every thing we need.  Share in our healing.  Share in our restoration. We are dreaming impossible things like a week together in 2014 in the Outer Banks instead of all Dan's vacation and time off being spent in a hospital with me. This is our family's wish.  The challenges we will continue to face financially will be there in the new year, but with renewed hope of some measure of health for me our faith in manna living stays strong. If you are near, come visit us (just don't wear any perfume or cologne!) and let us hug you and tell you "thank you" out loud.  Light a candle tonight.  Watch and wait with us.  Our Hope remains!)

What hurts the most and is hardest to heal (a post op update)

Many of you have asked why I am so quiet here. I don't want to talk specifics except to say "I'm sorry" if anything I every wrote on this blog hurt you personally.  I have never wanted this to be a place to spew anything.  I have wanted to tell my truth and sometimes I know this involves sharing stories that touch your lives too.  Our realities can be vastly different even when sharing the same space.  This is hard to reconcile even during good times but can be very hurtful when the painful stories don't line up as we recall them.  This makes me wonder why anyone takes the risk to write at all.  Why do I take this risk?  It seriously had me in a heap on the floor questioning a project I am finishing that I maybe should just throw away.  Here's the thing.  I already did that once before.  I'm braver now.  I'm kinder.  I also know it's a call.

To know I spoke less than life here to people I cherish crushed me.  It challenged everything I want to accomplish by writing.  All this hurt was wrapped in what I thought was a "thank you" to each and every one of you who were making this shunt surgery possible.  I am sorry I deleted that part.  I meant it and needed to say it.  I am on day ten post LP shunt.  I am ten days free of headache.  You did this for me.  You did this for my family.  Even if my headache returns tomorrow just knowing this is possible for me gives me insane hope.  Not one time have we ever expected your love in vast measure.  We don't deserve this grace.  Nor have we ever once thought of someone who chooses to save another life of loving us less.  This is how the Spirit works, moving and prompting certain ones to give and feed and carry other ones.

Heading into my surgery I was so emotionally wounded I had no spiritual space to prepare my heart for how difficult this surgery would be not only for me but also for my family.  Now we are through and in the fragile healing part that makes you think something is going to break any moment.  Did we suffer all this to lose now?  There's so much praise and everyone thinks I look well.  The truth is I'm not.  I'm slashed in eight individual places from the three surgeries I've had since August.  My body is hideous.  I also experienced a traumatic venogram that is giving me recurring nightmares.  I'm experiencing a host of post surgical infections and blisters and pore wound healing.  I have gained ten pounds and my joints hurt so badly I cannot seem to find a way to lay and rest unless I'm drugged.  I don't have a headache, and I ask God over and over again, "WHAT NOW?" He has given me sweet release from one of the most debilitating symptoms.  I feel far from my children, my husband, my friends.  I feel broken.  I never thought this would be the hardest to heal from.

While I was away on my trip Andrea Sugaski passed away from cervical cancer.  You may remember Dan and I, along with her friend, Cindi Akers, did a room makeover for Andrea and her daughter Grace early this year.  You can see it here at a blog I named in honor of my best childhood friend, Angie.  A Room for Angie began a long time ago when Angie was diagnosed with breast cancer.  Her diagnosis brought our lives that had drifted apart back together.  More than anything I wanted her to have a beautiful space to heal. Since then Angie, who had already suffered thyroid cancer, has also suffered the breast cancer, colon cancer and another bout of thyroid cancer.  When I connected with Andrea I knew it was a calling.  Looking back on that time talking and writing almost every day I see the joy the planning of the room brought her and especially how much she wanted her Grace to be loved and surprised with a princess room.  I know I have been grieving Andrea's passing but even more the loss Cindi is experiencing.  I keep trying to put myself in her place and Angie in Andrea's.  Today I had a visit from a wise woman in my life.  I opened up enough floodgates she should have been paid for listening.  After she left I found out my dear Angie had an ultrasound on her neck yesterday that definitely shows something bad.  She will have another biopsy in the next week.  I called her.  We cried.  Seriously God, How long?  And then as we said goodbye I pictured us riding home together.  She and I at the great throne where none of this will even be a breath of a thought.  In this world we say words we don't mean or maybe we do but they hurt someone as much as a scalpel.  And we can't take them back or make a wound heal because we wish it would.  In that world, the place we are going hand in hand, there is no hurt too great for that much love.

Just like that I'm done with my pity and my shame and my sorrow. This is not going to break me.  I'm going to answer that call now.

I get by with a little help from my friends

If you've been reading here long you know by now about the amazing group of dedicated people in our little community who actively make change in lives by believing in and being the good.  They are The Canton chapter of The Foundation for Community Betterment.  Twice they have adopted our family as recipients for their annual fundraiser Rocktoberfest.  Three years ago it was heading into Danica's decompression and fusion and last year it was for me and the extreme financial burden my surgeries and health concerns had added to our world.

In just two weeks, On Saturday, September 28th, we will be celebrating the 6th annual Rocktoberfest event being held at Hoover Park. It's not too late to plan to attend.  You can buy tickets here and get all the details.  If for any reason you cannot attend but want to donate to the deserving recipients for this year you can also do so on the site.  The money you donate is tax deductible and goes directly to help with these causes.

One of the three recipients is a new friend of mine, Halle Land.  Halle suffers from Ehlers-Danlos Syndrome just like Danica and I do.  We did not know one another until recently, and I had no idea she was being nominated for help from Betterment while our friendship was growing.  I had heard from a friend about a year ago about a young woman who spoke at an event at Malone about the grief of suffering a chronic and "invisible" illness.  She was shocked to hear her talk about EDS and even more intrigued to hear her mention a neurosurgeon in Maryland who had done a lower spinal surgery on her.  The very next day I was at a birthday party and met a woman who also knew Halle. She suggested we try to connect.  Over the next week or so we found one another on facebook and wrote a little back and forth.  It wasn't until Halle was headed for her upper spinal surgery with dear Dr. H earlier this year that I knew I had to meet her face to face. I took one of my dearest Kelly Rae Roberts angels given to me during Danica's surgery and made a care package around it and drove it over to her house.

In a moment our lives and hearts were entwined by so many things almost no one else in the world could understand.  Although we face our own unique comorbid conditions related to our EDS and different surgical needs and treatment our daily lives are very much the same as far as pain and how we relate to God, ourselves, those we love and the outside world because of this suffering.  Knowing her, getting to know her best friend, Kelsey, who lives with Halle and her husband and helps with her care and later meeting another dear EDS friend from Canton but now living far away, Sarrah, has been such gift.  And there is another thing too. Halle's mom is the stranger who took me to the airport that morning I had to fly to Maryland by myself. In the dark this woman I had never met showed up in my driveway to take me.  She had a bag packed and was ready to even buy a ticket on the spot and go with me.  Who does that?  She knows all too well what this life is like.  She has seen her daughter walk, stumble and crawl through trips like the one I was taking. Everything in her heart told her not to get involved.  She had too much in her own life to deal with. Still, she showed up.

I found out on that trip I needed my hardware removed from my skull base and neck.  I came home Friday to have a major abdominal and pelvic surgery at Cleveland Clinic on Monday.  Four weeks later I was back in Maryland for my hardware removal.  Can you guess who the woman was that came so Dan could go back to Ohio to work?  I wrote about her a few posts back. She became the good.  Just like that. Days off from her regular life.  Her own physical challenges of driving that far.  Her own gas money and miles on her van.  Her uncertainty about what my condition would be like or how staying in a hotel room with someone who was so sick and really a stranger would affect her. She just followed her heart and became this gift of person to me and to my family.

This is what Betterment is about.  Yes, we raise money to meet monetary and physical needs of recipients. For Halle and her husband Mike the money raised will help move the laundry facilities upstairs so Halle will be able to do laundry without being completely dependent on Kelsey and Mike to do this for her. Remember when I couldn't do laundry at all at my parent's house because of the stairs?  I know first hand what a gift this is.  They long to become adoptive parents of foster children someday.  This will make an impact for a long time on Halle's ability to help care for her own home and family despite disability and pain.

Aside from all the physical and tangible good Betterment is mostly about what John Lennon said, getting by with a little help from your friends.  The above picture is Kelsey, Halle, Sarrah and I on my couch in zebra jammies.  Those girls showed up on my doorstep on a night when I was suffering and so discouraged with my recovery.  (In case you don't know the zebra is the mascot for Ehlers-Danlos patients.) Both Halle and Sarrah were headed with Kelsey as their guide back to Maryland that week for scans and visits with Dr. H. Sitting there together felt like we were four strong instead of one weak and broken.  This is what Betterment is doing not just in  this big event but every day by living out reminders of how we must continue to care for each other in kindness.  None of us should be alone.  We aren't alone.

Dan, Delaney, Danica and I have only survived because of the grace of God and the love shown from near and far . . . over and over again. As I face this jugular compression issue and my desire to seek healing outside of traditional medicine I know I will be back here on my knees praying to God and asking you humbly to help us financially. This used to be one of the hardest parts of our long journey.  It is now the most heart changing thing I can share.  You entering in to seek my healing and the best life for me so I can serve is a miracle.  I never knew people could care this much or love this much or be this faithful for this long.

PLEASE take a moment to get to know Halle on her blog.  Consider what you might do to contribute to Rocktoberfest or if you could attend.  Perhaps you have felt called to be involved in some way out in our community.  I encourage you to consider attending one of Betterment's meetings and finding out the other great things they are accomplishing in our town.   We get by with a little help from our friends.  Be one of the friends.  You never know how quickly your life could change and you might need the very same love.

What would you fix?

This picture represents Danica's completely autonomous answer to a question asked for a homework assignment for Kindergarten. If she could fix anything at all in the whole world she would choose my neck. I love so many things about the picture she drew, but I think the most telling is she is seeing me smiling more since my latest surgery. My eyes are happier. She sees me healing. This shows her hope for me, and it gives me hope.

Dan and I have talked about how the past two months my two newest major surgeries have affected so many parts of our lives . . . AGAIN. One of the good things shining through is the kids are alright. During new crises we have family meetings to discuss how one another are feeling. Both girls express genuine concern for my well being but for the most part all this traveling and leaving and hospital and doctor and surgery stuff is just part of their normal. For over six years now Delaney has been dealing with it. She knows if I leave for the emergency room I might end up admitted and not come home. She knows I probably can't attend most of her school events. She laughs when I've taken my night time pills and then comes in to talk to me. I kept asking her about soccer the other night when she plays volleyball. They both know there are periods I need to be left alone with my door shut because the pain is so bad I cannot be kind. It takes everything in me to suffer. They know this is not their "real mom" but a person I so desperately don't want to be. I can hear Delaney's answer when I apologize for being short tempered, "It's okay, mom. I get it." Danica especially knows when I am needing someone to softly snuggle next to me and remind me I still count. She lets me know in no uncertain terms I am still her world, and I matter. She sticks up for me and fights for me in a way Delaney and Dan don't understand because neither of them have hurt this badly for this long.

As a mom who is rarely out in public with your children it's hard not to wonder what they are like in the real world without you. What kind of people are they becoming? How do they represent what we try to teach and practice at home? God has brought some beautiful confirmation lately about their character and kindness. I received a handwritten note from someone at church telling me they met Delaney and what a personable and lovely young lady she was. (Wow. If you're impressed with someone's child do this thoughtful thing for their parents. It was such a blessing.) Delaney's school sends emails for behavior issues. The first one I got this year I felt a lump form in my throat. Delaney has never had even one tag turned. The email was actually about something good. She had finished a project not due until September 24th and presented it to the class. The message was this:

Delaney did a great job on her Bag-A-Ball player book report. She delivered her presentation confidently and selected original visual aids to tell Yogi Berra's story. I was impressed with the details she shared about his life. Very interesting story! I'm so glad Delaney presented her report early so that her classmates could learn from her excellent example! Way to go, Delaney!

And then yesterday I received another that made me even happier:

A friend and Delaney picked to study England for International Fair. When seeing some of their fellow classmates being disappointed about not being able to also pick England, both girls told the teacher that they would pick another country and allow their friends to study England instead. I am so proud of both girls and their Christ-like behavior. They put others wants above their own and were amazing examples of Christ's love.

I worry about my girls. I know the "last notice" from an attorney about another medical bill I got this week will most likely turn into a certified letter. I know we are still in many ways depending on the love of others to survive. The shame and guilt of not fully being able to give your children things hurts because of pride. Delaney and Danica are both smart and motivated. We don't have a penny saved for college. We have no 401K. We have no savings account. If something happened to me, and I didn't have my disability payment, we would lose our home . . . the home they ask at least once a week if we can stay in forever. We can't take them to the beach or throw a big birthday party or go to Playhouse Square for Lion King. In big and small ways we feel like we are letting them down. We ask them to deal with very adult things a lot of the time. We ask them to sacrifice childhood things all of the time in exchange for another surgery for mom or another trip to Maryland for mom's doctors or more medicine for mom. I am afraid of what Delaney's memoir might read like someday. Will she resent me? Will she blame me? Will she write about how differently she wanted all this to be?

I realized my dear girls really just want me to be okay. They say funny things reminding me how much they do care. On Sunday Danica asked me, "Mom, why do you have clothes on?" I laughed and explained I was doing better so I would probably be getting dressed every day now. Pants don't hurt my belly anymore, and I'm hoping to be going outside and doing things. She replied simply, "Ohhhhh, Cool!" Sunday night I felt up to driving with Dan and the girls to drop them off at a church function. Delaney commented on how I wasn't biting my cheeks. "I guess that means you're not in pain, right?" When I was in my worst pain I would always suck my cheeks in and bite them until they would bleed. It was a way for me to remind myself not to talk about how bad things were because no one wants to hear that broken record. It would also help me focus on something else besides the original hurt. "Yes, Laney, I'm really doing well today!" I could honestly reply. Just riding in the car with my family was a really big deal for all of us.

I thought about Danica's assignment above. I wondered what the other kids her age were thinking about fixing. I wondered what my answer would be. Honestly I would have probably focused on something other than my broken body. I would have asked God to fix our debt so we could start over. I am still so focused on the overwhelming task of managing day to day to survive. I wonder how much this stress keeps me from fully healing. I want my sick friends to be fixed. I want their pain to be taken away and their impossible knots untangled. I want to fix so many things. But would I have been so bold to ask for a real repair of my neck? I realize how little I ask God to heal me.

I found out Friday night on a phone call with my neurosurgeon that my pressure incidents, the last big painful health hurdle I am facing that has been especially affecting my eye sight, is due to right sided jugular compression. This is most likely from an extrinsic source. I will have to travel back to Maryland soon to have a venogram and talk about possible treatment options. As weak as I am I need this to happen in 2013 because of deductibles. Still, we have no money to travel. We have really no physical or mental or spiritual strength to address what is a very new discovery of sorts in our community. There is no real protocol for treatment. As fall and winter close in my days will get worse. I know this. With all the amazing relief I have from the last two surgeries I am terrified to end up with my head back under the covers waiting for my head to explode or to go blind. So, yes, I would ask God to fix this. Please, will you ask Him too?

I'm blessed beyond measure because of the love from all of you. Thank you for feeding us and visiting and praying. So much real change is happening. I feel better than I have in years. Truly, I do. I am continuing with my treatment for PANDAS. I know this has made a huge difference in my health and mental well being in addition to removing all the endo and removing the hardware and bone spur in my neck. I feel stronger every day. I believe my adrenals are stable and my POTS is back to a manageable place. Now I need to control the ever changing pressure in my spinal cord and brain and find a way to keep proper blood flowing no matter what position my head or neck is in. Please pray the doctors working on this treatment would have wisdom and move in a time that might make it even possible for me to get real help.

I'm so grateful to all of you who are helping Dan and I raise our girls. They are thriving in the midst of very difficult things because they are living in the shelter of the love and kindness of all of you. How could they not want to show compassion and empathy and reach out doing their very best? All the rest really falls away doesn't it? When you come to the place in a long journey when asking "Why?" seems silly because it doesn't matter. When you feel so sure God is doing big things with hearts you can truly say with Job, "Though you slay me, I will praise You." God, just take these girls and use their lives to fix things that matter most. Help me to trust You with the rest.

(It's no secret I have lived in the book of Job for years now. This song by Shane and Shane ending with John Piper has been on repeat over here. This is where I am. When Dr. H told me I would need more intervention for my jugular I didn't feel even one heart beat increase. He is allowing this, not causing it. I will praise Him. My flesh and my heart fail, but my eyes are open and I can SEE. Do not lose heart. Our hope remains!)

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. 

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.

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.