Monday, April 30, 2012

Courage, libraries . . . and a few more treasures added to the giveaway

I'm a little disappointed in so few entries for the kind and brave giveaway so far.  I hope that means you are working on your nominations!  The above quote is one of my favorites about being brave.  I'm having one of those days with barely a still quiet voice remaining at 7:30 pm. 

A little thing you may not know about me is I grew up with quite possibly the world's most amazing public library in my little town.  I could write an entire book about the details of that place.  The day I turned sixteen I began working there as a page and then ended up at the circulation desk.  I worked there for years into college, and I began graduate classes to be a school librarian.  Now it's all computers and checking out ebooks and media, but I love the old card catalogs, the rubber stamp with the due date on the card in the little pocket in the back and the librarian who knew you by name and saved a stack of titles behind the desk just for you because she knew you would be there the same time every week to get them.  This is the background behind why I"m including these sweet earrings from etsy with Dewey decimal numbers from the poetry section on them.  I ADORE these earrings. 

I'm also giving away the beautiful scarf you see underneath the earrings.  Scarves are a signature part of my personal style.  I had my eye on a hand crocheted one like this on Anthropologie forever.  Of course they wanted over a hundred dollars for it.  I found this one at Old Navy.  I haven't taken the tags off.  I have saved it and realized I really don't need another scarf or go anywhere I'm not wearing stretchy pants anymore and wanted to give it instead to YOU. 

Head over to yesterday's post, Sneak Peek . . . Kind and Brave Giveaway, to see all the other fun things included in the care package and the instructions on how to enter.  I received the most touching entry today written by a daughter nominating her mother for her bravery and kindness.  I can't wait to read yours.

Sunday, April 29, 2012

Sneak Peek . . . Kind and Brave Giveaway

“I'd like to add some beauty to life," said Anne dreamily. "I don't exactly want to make people know more... though I know that is the noblest ambition... but I'd love to make them have a pleasanter time because of me... to have some little joy or happy thought that would never have existed if I hadn't been born.” ~L.M. Montgomery

I recently wrote about how I should probably join overgivers anonymous.  But then, is there really such a thing as giving too much?  I have cleaned out my gift closet and made a sweet care package full of some of my favorite things.  I wanted to do it here on the blog in a way that would encourage some of the silent readers to say "hello" and share stories of someone kind or brave in their own lives.  I am ready to meet you all and know a little about why you keep reading here.  So many of you have blessed our family over and over these past years with gifts and prayer and encouragement.  I wish I could send a package to each of you! 

Here's a few pictures of just some of the goodies included in this giveaway.  The rules to enter are simple. 

1.  If you don't already, follow the blog by joining in the right sidebar as people praying for us.  You will need to have a google account to do this, but that is pretty simple to set up.  Let me know if you just can't figure it out.  Some people can't seem to comment either and this is probably because you do not have a google account. 

2.  Comment on THIS post your favorite verse or quote about courage or kindness. 

3.  Email me at your nomination of someone in your life that has demonstrated bravery and/or kindness that has inspired you.  

4.  Optional but fun is to share this "Kind and Brave" giveaway by using the "share" function in the top right of the blog.  Pass this on to your friends and give them a chance to nominate YOU. 

Wouldn't you LOVE to have all this delivered as a surprise to your front door?  Tomorrow I will share more about some of the pieces, links to where you can find them and also a few more beauties that will be included like a stunning scarf and a pair of very special earrings.  In the meantime start your nominations!  They are private and with your permission the winning one will be posted on the blog and also printed beautifully to include with the package.  I will leave this open until a week from today, May 6th, and then announce the winner on Tuesday, May 7th and get the package shipped off to arrive in time for Mother's Day.  PS. Sharing with your hubby or children and having them enter for YOU isn't against the rules either. 

Kindness ALWAYS matters.  Courage ALWAYS wins.  Have a blessed Sunday.  

Friday, April 27, 2012

Healing alone

"But if you have been sick or injured, then you know, there is always something surprising and mysterious and even scandalous about it. You have been betrayed by your body, when you had gone around all this time thinking you and your body were one thing, inseparable, a winning team. And although the doctor’s approach you with their sterile, shining instruments and unfailing clinical cool, still you panic, and inside you feel hurt.

Because you are hurt.

And although doctors now have treatments for most maladies, what comes after that — the healing — is something one must do alone."  Amy Musselman

Tonight I am in bed.  Dan is in the living room watching TV.  Danica is in her room playing and Delaney is in her room doing art.  It's Friday night.  I feel alone.  I hear my parents in their room above me.  The dog barks when she hears someone get ice from the refrigerator door upstairs.  A constant creaking and moving above me irritates me and makes my heart race.  I have been overstimulated today.  From the moment I woke up I felt very fuzzy like I am on the outside looking in a window pane full of condensation.  I can't pinpoint it, but I'm not right even by my low standards.

I had a dear friend bring me lunch and visit.  I have had very few visitors since this last surgery.  It meant so much to just be with someone and not really talk about my health but about her life and work and other things.  She shared today how hard it is to know when to reach out to someone healing.  I know this.  I know you don't want to call because I might be sleeping.  I know you are thinking of me and praying for me.  I know it's weird to come around to the back door of a house that's not really mine.  I know you probably don't want to meet the entire extended menagerie of people who live here if you come to the front door.  It is a crazy busy time of year for most people too.  I once again watch the lives of others moving on.  I lift one weighty foot in front of the other to move from room to room.  The longer I am shut in the more I isolate myself.  I pull back from people.  Even talking to my childhood friend on the phone this week I just couldn't open my heart.  I want to say the right things to make this healing stick.  Part of this I still tell myself is acting like I'm okay.  "Mind over matter" is really a stupid saying.  Sometimes it really is what it is and no pie in the sky attitude changes the reality of the situation.

I did something really brave on Tuesday night.  I planned a surprise "date" with my friend, Sharon.  She is very artistic, and I am not, but we are both creative in our own ways and enjoy sharing this.  I bought tickets for us to go to a ladies night out at the Canton Museum of Art and take a watercolor class.  I prayed hard about the environment and being able to make it through an evening event.  The room was well ventilated with high ceilings and there was no one near us with perfume.  The paints didn't stink, and I really had such a nice time.  Sharon's painting was gorgeous and inspired me.  As we drove back to her car where we met we talked about how unlikely our friendship really is.  I met her four years ago at an Arabica.  She is ten years younger than me.  She was in a completely different stage of her life.  She was wounded by many things.  Although the sharp edges that cut us were different our hearts were very much the same.  I began meeting with her when I could.  It was always hard.  I was working from home and had a young baby and little girl and stress that grew into big health, financial, head and heart problems.  She was a touchstone in many ways that kept my perspective.  I often looked at her and tried to remember what it was like to have the entire world at your fingertips and still feel hopeless some days.  As the mentoring faded, and I watched her scars healing and her heart grow to embrace life again the differences between our personal circumstances couldn't keep us from sharing the things that mattered.  She was the one who came and stayed nights with me at the lake house.  She knows what alone feels like.  She really gets how I have so few spoons to share with others, including her somedays, and she stays.  She doesn't need to be pursued to know I love her.  This is something most people don't get about sick people.  We can't make plans.  We will cancel and feel even more guilty.  We may go through all the painstaking effort to go and then get there and need to leave.  Our spouses and children are let down.  You are let down.  We retreat. 

We are alone. 

Tonight I had every hope of a fun family Friday night.  I was feeling tired and strange but not really in pain.  I ate turkey and cheese on flatbread for dinner.  Yes, some gluten, but I had been so "good" all day.  Something made me very sick.  I felt my blood pressure drop.  My face went white as a ghost.  My tummy began to swell and cramp, and I knew this was a real attack.  My family makes jokes sometimes.  They don't know how to cope with this either.  Dan doesn't know if I will pass out or need him to call 911 or if I need to be left alone.  They are all laughing and planning the weekend and being boisterous, and I say firmly, "I can't be spoken to right now."  This is funny to all of them.  I feel alone.  I run to the bathroom and get sick.  I have several episodes before falling into bed.  Happy weekend. 

I jump on facebook to connect with someone . . . anyone.  I see two events in downtown Canton I would so love to attend tomorrow including the launch of a friend's food tour business.  I won't.  I wouldn't dare try.  The Monica who loves all things God has richly given us to enjoy must not.  I can not.  This is ironic. 

I once in awhile check the stats for this blog.  Hundreds of you are still reading.  Most of you are hurting too in some way or another.  My friend Kristin told me of two friends our age diagnosed with different brain cancers.  My mom sends an email to pray about a dear family we know with their little girl in hospice.  My brother-in-law will head from Maryland to California in the next weeks for surgery.  So many of you have children with Chiari and related disorders or suffer from EDS and all that comes along with it.  Daily pain and suffering and lives forever changed by the search for healing and the lonely days and nights in the alternate universe we share. 

We are not alone.  Even though there are many things we must do by ourselves.  We must remember the community of prayer and kindness that has carried us.  We must remember He has never forsaken us for one moment in this journey. 

Mercy Me has a beautiful song titled The Hurt and The Healer.  (Link to listen)

These lyrics are my heart tonight.  I will find my way back to His arms.  Jehovah Rapha, "The Lord that healeth thee."  His arms are wide enough for us all.  Won't you meet me there?

The question that is never far away
The healing doesn’t come from the explained
Jesus please don’t let this go in vain
You’re all I have
All that remains

So here I am
What’s left of me
Where glory meets my suffering

I’m alive
Even though a part of me has died
You take my heart and breathe it back to life
I’ve fallen into Your arms open wide
When the hurt and the healer collide

Sometimes I feel it’s all that I can do
Pain so deep that I can hardly move
Just keep my eyes completely fixed on You
Lord take hold and pull me through

So here I am
What’s left of me
Where glory meets my suffering

I’m alive
Even though a part of me has died
You take my heart and breathe it back to life
I’ve fallen into your arms open wide
When the hurt and the healer collide

It’s the moment when humanity
Is overcome by majesty
When grace is ushered in for good
And all our scars are understood
When mercy takes its rightful place
And all these questions fade away
When out of the weakness we must bow
And hear You say “It’s over now”

I’m alive
Even though a part of me has died
You take my heart and breathe it back to life
I’ve fallen into your arms open wide
When The hurt and the healer collide

Jesus come and break my fear
Awake my heart and take my tears
Find Your glory even here
When the hurt and the healer collide

Jesus come and break my fear
Awake my heart and take my tears
Find Your glory even here

Monday, April 23, 2012

You were my dream (on being a different kind of mom than I ever imagined)

I take pictures of almost everything.  I'm not that good at it and haven't been well enough to take a class, but I believe there are hundreds of stories still needing written in this snapshots I take every single day.  This is a picture of my jewelry box drawer.  I have almost no things that are off limits to my girls, but my jewelry box is sacred ground.  Every once in awhile they will ask to sit on the floor with me and go through piece by piece.  I don't wear hardly any costume jewelry but have over the years collected some meaningful pieces, mostly necklaces, that tell life stories.  We always start with the Peretti gold bean from Tiffany Dan bought me on the first birthday we celebrated while dating.  I wished on that bean we would stay together forever.  We have.  I tell them it is magic, and if they close their eyes tightly and touch it they can wish too.  My bottom drawer is full of little trinkets that are Delaney and Danica's.  They are more important to me than all my necklaces combined.  I have the itty bitty Pooh that finally fell off Delaney's "cheech" blanket,  I have a tiny bracelet that spells "POOTS . . . BRAVE" on it.  Her wrist was so little when all this began.  There's teeth, a hex bug, a vintage polly pocket, diary keys, a ballerina who lost her tutu, a guitar pick, a marble, a squinkie coin and Pascal.  It's like a little drawer of their childhood.  I don't want to lose it, ever. 

I've been thinking so much since returning home from my latest surgery about my own identity.  I feel very lost most days.  I am unable to do even the basic wife and mother kind of duties now.  Dan takes them on without a grumble or a resentment that is nothing short of real true love.  Delaney too has been showing much more responsibility.  Out of all the parts of myself I have surrendered I am most worried about my girls and what they will remember about their mama.  I have been coming to terms with the fact I may never attend school functions or go to the mall with my girls.  I may not ride bikes with them or run beside them.  I may not throw elaborate birthday parties or sleepovers.  Even our favorite "dates" to scour TJ Maxx and Marshalls for clearance treasures are few and far between now because everything makes me sick.  I get sad and lonely when Dan walks out the door on the weekends with them to do something fun.  They call me and text me so I feel like I'm there, but it is not the same.  This is nothing like I ever imagined my life would be, and I am so different than the kind of mom I am on the inside; the mom I was; the mom I long to be.  My body has betrayed me and stolen one of my greatest magic bean wishes. 

If you've never read Kelly Corrigan's little book about motherhood titled "Lift" you should.  You will want to buy two copies because once you've read yours you won't want to part with it, but you will know at least one mom who needs to read it too.  In it she writes,

"I heard once that the average person barely knows ten stories from childhood and those are based more on photographs and retellings than memory. So even with all the videos we take, the two boxes of snapshots under my desk, and the 1,276 photos in folders on the computer, you'll be lucky to end up with a dozen stories. You won't remember how it started with us, the things that I know about you that you don't even know about yourselves. We won't come back here. ....

You'll remember middle school and high school, but you'll have changed by then. You changing will make me change. That means you won't ever know me as I am right now-the mother I am tonight and tomorrow, the mother I've been for the last eight years, every bath and book and birthday party, gone. It won't hit you that you're missing this chapter of our story until you see me push your child on a swing or untangle his jump rope or wave a bee away from his head and think. Is this what she was like with me?"

I have written privately to my girls since they were in my womb in journals I will gift them someday.  Dan too keeps a journal to them.  We have amazing little rituals like writing notes to one another, especially if we are mad, sad or sorry.  We have a treasure box where we keep them all.  I know there are so many things we share that busy "soccer moms" might never get to with their kids.  We snuggle a lot.  We read and talk about what we read.  We collage our visions and hopes and prayers for the seasons in our lives.  We pray.  I have had this fresh perspective on the gifts that are wrapped in ugly packages like chronic illness and pain.  I do believe our slow life, early bedtimes and lots of talking and listening to one another has shaped us.  The compassion I see growing in both my girls for me in my suffering is forming their character. 

Delaney has recently been recognized in several forums for her artistic contributions, kind spirit and perseverance.  This is who my Laney is.  So many nights I prayed she would not become a casualty in this journey.  Early on it was so very hard for her.  God has graciously worked in her heart and brought people into her life who have filled holes and cared for her and nurtured her.  Her clear focus and complete dedication to art is amazing.  I hold my breath when I kiss her on the forehead each night.  I don't want her to forget for even a second in her life how my world turns on her axis.  It's a scary way to love and live.  It's a scary kind of love to receive and reciprocate.  My sister's little baby, Faith, was staying here last week and Delaney said to me as we were all fawning over her, "Mom, I wish you could have another baby."  It's not even a new wound, but it hurts so badly somedays.  She thought for a moment and saw the pain in my face and continued, "I know . . . you would have miscarried anyways."  Her brutal understanding about my body and my past at her age made me comforted.  Sometimes with kids you never know what they are processing or internalizing.  One thing Delaney and I have always done is talked frankly.  I could see the fruits of this, and it gave me peace. 

On Saturday I went out by myself for an hour to a cute little shop here in Hartville.  I have been wanting a vintage typewriter for a long time now.  I found one there.  It was perfect in every way, and I bought it.  I rearranged my desk to include this new find.  Later in the day Delaney and I sat on the floor here in my room, and I showed her the teacher gifts I had been working on for this week's teacher appreciation.  She loved the way I mixed items and colors and ribbon.  She looked in my eyes with her big baby blues and said, "I am just like you mom."  I told her to go look at my desk and see what I bought.  She screamed.  I went out, and she was crying.  My nine year old didn't think it was weird or creepy at all.  She was in love with my find.  She told me all the things God knew my heart needed to here about how she gets her eye for design and color from me.  Oh, and she loves me and is so glad I am her mom. 

Heart swell. 

Danica's love has been palpable as well.  Several nights last weeks she would say things to me about wanting to stay four so she would always be able to sit in my lap and snuggle at night.  Her little voice trembling she would tell me, "Mom, I have to just stay like this.  I don't want to grow up."  Not a day passes she does not make me a note or a drawing of her and I together with some of the first words she can write by herself, "I LOVE YOU MOM.  DANICA"  I don't want to throw them away.  Any of them.  Every single prayer she says these words, "Dear Jesus, Thank you for this day (Yesterday she opened one eye and looked at me, "Mom, should I say thank you for this day even though it's raining?").  Please help my mom to feel better.  Please help daddy to get home safely. (If sissy is at school she asks for her safety as well.)  Thank you for this food.  Amen."  Her evening prayers include someone we pick from our prayer bucket, a little bucket with names of people we know and love (and some we don't know) written on popsicle sticks.  Otherwise they are almost word for word the same, minus the food gratitude.  Last night as we spooned under her warm covers she chatted about her future.  I know she's only four, but she thinks about it.  She said, "I decided not to be a brain doctor or a fashion designer in Paris.  I just want to be a mom like you."  Tears ran down my face as I explained she could be a brain doctor, design clothes and be a mommy but being a mommy is the best. 

I mess up a lot with my girls.  I'm selfish.  I yell.  I am lazy about discipline.  I am tired all the time, and I let it show.  I hurt all the time, and I talk about it.  I yell.  I say "no" way more than "yes."  I put on a DVD way too often when I need to just rest.  I feel guilty.  I am a martyr but not in a good way.  I say I'm sorry a lot.  I pray with them when we get upset and angry.  I put on soft piano music and we all relax and become kinder.  We do art.  A LOT.  We write letters and notes.  We snuggle.  A LOT.  We read.  We dream really big dreams.  We talk about them and believe in them just like we do our God. 

I am many things.  I am a child of God.  I am a wife.  I am a sister.  I am a friend.  I am a sinner.  I am a saint.  I am a daughter.  I am a writer.  I am a grandaughter.  I am an interior designer.  I am a patient.  Over and over again I am a patient.  He also made me a mother.  The most important thing I have ever been entrusted with are these two girls with souls. 

Kelly writes towards the end of her book,

"I think about your futures a lot. I often want to whisper to you, when we're tangled up together or I'm pinning your poetry to the bulletin board or repositioning the pillow under your head so you don't get a crick. Remember this. This is what love feels like. Don't take less. But what I end up saying is "This was my dream. You were my dream." I've said it too many times though; now when I look at you all soft and gushy and say "Guess what?" You say "This was your dream. I was your dream."

Thursday, April 19, 2012

Tethered Cord Surgery

I am finally feeling emotionally up to posting about my recent tethered cord surgery at Doctors Community Hospital in Lanham, Maryland on March 28th.  Many of you who read this blog may not be interested in the detailed medical information I will share here, but I know just as many who are struggling with their own diagnosis and decision about moving forward with this operation, and as much as I sound like a broken record about every single case being different, I honestly wish I could have found someone's personal account of their journey like I am trying to stay faithful to here.  I always add the disclaimer when I post information like this out into the world wide web that I understand the risks of sharing such personal medical information in this forum.  I believe the benefits to others outweigh those risks to myself or my family. 

When I first visited Dr. Fraser Henderson in October of 2011 I was in every way desperate.  I was in bed 20+ hours a day and could not function.  Because of Danica's journey several dear women who followed our story here on this blog and connected with me privately about my own mention of similar symptoms and chronic pain pointed me in the right direction.  I knew all the right scans to ask for to finally make a real determination about how I might find some relief.  Because of my compromised brain stem and instability the brain decompression and fusion of the skull base to C2 was performed on November 21st, 2011.  During those first visits in October we discussed tethered spinal cord.  I had indicators on my imaging including at the thoracolumbar junction a 30 degrees of kyphosis on forward flexion which is very abnormal.  I had a syrinx in my lower thoracic spinal cord.  Scoliosis of the syrinx in the lower cord is an indicator of tethered cord syndrome.  In the lumbar spine I had CSF present below the S2 level with a 6mm Tarlov cyst and increased CSF space throughout.  These are also indicators of tethered cord syndrome.  Dr. Henderson referred me to a urologist locally, Dr. Murdock, and he diagnosed me with detruser sphincter dyssynergia consistent with neurogenic bladder.  This also suggests a tethered spinal cord. 

At my 10 week follow up with Dr. Henderson from my first surgery I explained although I had complete relief from the suboccipital vicegrip on the back of my head and neck and much feeling returned to my arms and hands I felt even more aware of my lower spine issues.  It literally felt like someone was tugging my head backwards.  I had a lot of neck pain that seemed unrelated to just surgery recovery.  Also the weakness in my legs when I swayed my back in at all or tried to walk or climb stairs would bring me to my knees.  My bladder issues, the most pronounced being the inability to completely empty my bladder, continued.  We decided to move forward with scheduling the surgery.  This visit was on January 23, 2012.  I still felt like I had much farther to go in my recovery from the first operation.  I think I was especially unready emotionally to go back in because the decompression/fusion surgery is huge and the complications and healing process are so varied and all consuming.

In hindsight I wish I had scheduled the tethered cord surgery sooner.  As time wore on my symptoms truly did become worse.  This is often reported in patients who have the decompression/fusion first.  Still, right up until the morning of March 28th I waffled mentally about what I was about to do.  Much of this came from negative press surrounding tethered cord surgery in general from other institutions.  I had read too much on the internet and become confused.  Also, Danica's most recent MRIs in Cincinnati had "ruled out" tethered cord as the cause of her continuing bowel issues.  I still have a mother gut feeling she too has this condition.  I have not had the energy to pursue with other specialists, but that will need to come this year as well since we plan to send her fulltime to preschool in the fall. 

After a grueling car trip to Maryland and paperwork snafu after paperwork snafu and a PIC line debaucle I was ready to just be put under and get the show on the road.  One of the many symptoms of my EDS is a very bad TMJ issue.  This has gotten much worse since my November surgery.  I can barely get my mouth open two finger lengths.  Apparently the intubation went horribly wrong.  The anesthesiologist told me post op it took him five tries to get the tube in.  My throat was completely raw and one of my bottom front teeth was chipped.

The operation performed by Dr. Fraser Henderson was a microsurgical laminectomy, partial S1-S2, electrophysiological mapping of cauda equina, untethering of the cord, dural closure with tissue; dissection of Tarlov cyst; dural patch graft and sacral laminoplasty. 

The recovery went pretty much as expected.  Dr. Henderson keeps his patients lying completely flat for three days following surgery to minimize the risk of CSF leakage and meningitis.  My pain level on day two was much greater than the day of surgery.  They did a wonderful job of keeping me comfortable and listening to my particular needs.  I have to tell you I am a really good advocate for myself and others when it comes to  medical care.  I have knowledge of almost every drug possible and keep any nurse or PA on their toes.  Another side effect of EDS is the varying rate our bodies metabolize drugs.  I build a tolerance very quickly to IV and oral pills and often need my doses more frequent than others or a bolus to get me through to the next regular dose.  I know what drugs work for me and what drugs do not.  The team at Doctors is wonderful about understanding EDS patients and accomodating for these special needs.

My PIC line did go bad on day two.  Remember how I knew something was wrong?  I just thank God it got me through surgery.  This is one of the situations where the day nurse was not very good at listening to me, and I kept insisting the PIC was bleeding and leaking fluid.  She changed the dressing and it bubbled again.  I was pretty mad.  I insisted they remove all the surrounding dressing and look.  Sure enough, it was blocked.  One of the special radiologists that does PICs came to my room to get me and take me back to do one in the other arm.  Even though I had a sign on my door letting people know how sick perfumes and other chemicals make me he came striding in with a half a bottle of POLO on.  My reaction was instantaneous. I turned completely red and hot and my throat closed up and I was gasping for air.  This was actually a good thing in the long run because it is important for medical staff to really see how dangerous my reactions are getting. 

My surgery was on Wednesday and Saturday morning I was so ready to head to the hotel.  My favorite nurse in the world, Sudha, was there, and she was so on point.  The paper work was all ready and the prescriptions and when Dr. Henderson strode in to see me and give the final okay I had already peed twice with the cath removed and was raring to go.  I have to just say here again that the work this man does is not normal work.  He is different from you and I.  Every facet of his being is committed to his patients and research and the work he does.  He draws strength from God.  This is his calling.  I love this man and pray for him every single day.  The stresses put on the few surgeons in the United States who have given their lives over to helping EDS patients with Chiari and tethered cord are under attack in many ways right now.  I would ask that you would pray the work they do will not be hindered and patients like me who truly need these surgeries would be able to access the help they need. 

I am really sick in other ways, but I am amazed at the results of the surgery and the relatively quick recovery.  My incision site is small and healing beautifully.  I did get a UTI from having a cath for so long, but that is pretty par for the course for me.  For as long as I can remember I have curled my toes under. My calf muscles have always been so super tight and cramped easily and also my feet and toes.  I could never lie flat in bed and had restless leg syndrome.  Walking or standing for long periods of time had become impossible for me.  The relief in my neck is the most pronounced.  I have not had ANY neck pain since my surgery.  Literally the cord pulling my neck back and so tight was clipped and now my head and neck can relax.  My legs and feet feel so much more normal. 

Bottom line is I needed this surgery, and I am so thankful I had it done.  I'm sure as recovery progresses I will notice even more improvement in areas.  This surgery is not suggested lightly these days, especially in light of litigation.  If your trusted doctor builds the case for you I would suggest you consider the relief it could bring.

I hope this has helped a little for those on the fence about one of the many issues facing us who share this strange mixed up diagnoses.  Do your research, listen to your body, trust your gut and have courage! 

A special thank you to everyone who donated to help with my surgery and who prayed so faithfully for my family and I.  Our hope remains!

Wednesday, April 18, 2012

When God whispers will you hear Him?

"The hardness of God is kinder than the softness of men, and His compulsion is our liberation."  C.S. Lewis

One of the things I love most about the Bible is when complete connections between the Old and New Testaments and the fulfillment of God's promises and purposes are shown clearly to us.  No matter how much you have grown up in the Word or read your Bible there is always so much more new truth to mine.  My dear friend sent me a message to listen to from the "Together for the Gospel" conference held recently at Southern Baptist Theological Seminary.  I am providing the link here and encourage you to find a quiet hour to listen and be fed with the truths in this sermon titled The Underestimated God: God’s ruthless, compassionate grace in the pursuit of his own glory and his ministers’ joy. : Together for the Gospel.

The story of God's provision for Elijah in chapter eighteen of 1 Kings has often encouraged my heart.  I love how God continues to feed the widow, her son and the prophet with just a little flour and oil.  When the son becomes ill to the point of not breathing Elijah pleads with God about the "unfairness" of bringing this calamity upon a woman who had so faithfully obeyed.  God allows Elijah to heal the boy through His power.  I think if you or I had witnessed one or both of these miracles we would boast there is no way we would soon forget God's faithfulness and certainly would trust Him with any new challenges that might crop up. 

Then we get to chapter 19.  Elijah was on the war path.  Full of the Spirit he killed all the false prophets with a sword and the words came to him that Jezebel was plenty mad and out for his blood.  Just like that Elijah was overtaken with fear and ran for his life.  He travels out in the desert and leaves his servant and goes a day further.  He finds some shade and gets real with God.  "He came to a broom bush, sat down under it and prayed that he might die. “I have had enough, LORD,” he said. “Take my life; I am no better than my ancestors.”  Then he lay down under the bush and fell asleep." 

This despair came from the euphoria of a battle won being followed immediately by a hardship that seemed to close the door on everything he had prayed for, hoped for, drempt of and lived for.  This is exactly where God brings His children to understand what they REALLY believe.  Pastor Ligon so poignantly asks, "What are your greatest losses in life?  What are your unsatisfied dreams?  How we respond HERE may be the most important thing in life!"

Once again we see the compassion of God as He sends an angel to care for Elijah's physical needs.  He ministered to him with several meals between naps until Elijah's strength begins to return as well as his resolve.  He makes the forty day journey to Mt. Horeb and then sets up camp inside a cave.  When he wakes God confronts Him about His complacency and discouragement.  I love how God says so bluntly to him, “What are you doing here, Elijah?”  I know God has woken me up and said this to me before.  "Seriously, Monica, What are you doing here?  Why are you so afraid?  Don't you remember my compassion and lovingkindness?  Don't you think I have this plan worked out for my glory and your joy???"  Elijah's answer makes me chuckle a little.  It's like a child to answer the way he does not remembering God's question was rhetorical.  He knows all.  It wasn't an information seeking question at all.  Still he says, “I have been very zealous for the LORD God Almighty. The Israelites have rejected your covenant, torn down your altars, and put your prophets to death with the sword. I am the only one left, and now they are trying to kill me too.” 

God answers with a request, “Go out and stand on the mountain in the presence of the LORD, for the LORD is about to pass by.”

As if food out of nothing was not enough, the power to raise a child from the dead, strength to slay soldiers and just having his own personal angel minister to him God lets him know He is going to show Him something only one other man, Moses, had ever seen, a real glimpse of the God of Heaven and earth. 

Here's the best part.

 I can completely feel Elijah's heart beating out of his chest as he waits.   

"Then a great and powerful wind tore the mountains apart and shattered the rocks before the LORD, but the LORD was not in the wind. After the wind there was an earthquake, but the LORD was not in the earthquake.  After the earthquake came a fire, but the LORD was not in the fire. And after the fire came a gentle whisper.  When Elijah heard it, he pulled his cloak over his face and went out and stood at the mouth of the cave."

A gentle whisper. 

Not in the wind.

Not in the earthquake.

Not in the fire.

A gentle whisper.

God asks him again, "What are you doing here, Elijah?"

The realization set in.  Elijah knows now what God is trying to say.  It's not going to happen the way he drempt.  God's plan was different all along. 

Elijah wanted a spectacular showing of God.  Instead God literally crushed Elijah's own idolatry of needing his ministry to play out his way because He wanted him to have greater joy.  For all intents and purposes God ends Elijah's ministry and passes on his legacy to someone else. 

God seems harsh.  Or does he?  His provision for Elijah had been RELENTLESS.  God's purposes for his life were clear cut. 

God's glory.

Elijah's greater good and ultimate joy.

Fast forward to the New Testament and Luke 9.  Read the entire chapter.  Wow, it's good.  But beginning in verse 28 it begins to tell the story of the transfiguration of Christ. 

About eight days after Jesus said this, he took Peter, John and James with him and went up onto a mountain to pray. As he was praying, the appearance of his face changed, and his clothes became as bright as a flash of lightning. Two men, Moses and Elijah, appeared in glorious splendor, talking with Jesus. They spoke about his departure, which he was about to bring to fulfillment at Jerusalem. Peter and his companions were very sleepy, but when they became fully awake, they saw his glory and the two men standing with him. As the men were leaving Jesus, Peter said to him, “Master, it is good for us to be here. Let us put up three shelters—one for you, one for Moses and one for Elijah.” (He did not know what he was saying.) While he was speaking, a cloud appeared and covered them, and they were afraid as they entered the cloud. A voice came from the cloud, saying, “This is my Son, whom I have chosen; listen to him.” When the voice had spoken, they found that Jesus was alone. The disciples kept this to themselves and did not tell anyone at that time what they had seen.

WHAT?  How did I miss this all these years?  The two men who had been granted a glimpse of God's glory in their earthly ministries and both denied their deepest earthly dreams, literally as if God held out their greatest treasure to them in His almighty hand and then said, "Do you see it?  You can't have it now."  They appeared in glorious splendor talking with Jesus.  Elijah was finally shown "the light of the knowledge of God’s glory displayed in the face of Christ."  (II Corinthians 4:6)

It all makes sense.  This is how God works.  He often chooses to go after our greatest treasures and leave us with nothing else but a quiet whisper.  I have to admit.  I am often pitching a fit too loudly to even remotely hear His voice.  I said to my husband just the other night, "I'd rather die than live like this any longer."  It's just not fair to obey Him and fight so hard for so long for my Danica and then not be allowed to enjoy or even watch her in most cases live out her healing.  I'm in bed.  My surgeries have brought me so very far, but I am a very sick woman.  My mast cell attacks are getting closer together, more unpredictable and very scary.  I can't go anywhere or do anything because the entire world is my enemy.  Even this dark room where I lay in pain is making me sick.  Is it the carpet, the dampness only I seem to notice or be bothered by, the lack of ventilation . . .?  Is it the soul wrenching fact I am here at all?  God took my last big idol from me last summer.  He took my home.  I'm looking for some crazy answer to come in on wind or an earthquake or a burning fire.  He's showing Himself daily in provision and healing and strength to fight and even angels who care for me with earthly graces.  What if He's holding out in His hand this thing, my health, the ability to ever really function normally again or have my own home, and then telling me, "You can't have it now."

This is where God has brought me to understand what I REALLY believe.  What I do in these moments means everything.

My life isn't this cheap.  God will not leave me here in these disappointments.  I have a sure and certain HOPE.  I will see Him face to face.  He has gone to prepare a place for me.  He already has my floorplan picked out.  Home.  Health.  Enjoyment forever.  Exceeding, abundantly more than I could ever ask or think.

God is relentlessly pursuing me and whispering in my ear.  "Do not lose heart.  He that endures to the end will be saved.  My strength is made perfect in your increasing weakness.  I will be glorified the most and your joy will be the greatest when this is finally over." 

You are my God.  You are impossible to overestimate.  I believe.

Tuesday, April 10, 2012

Royal Bounty and how much I owe

"And King Solomon gave unto the queen of Sheba all her desire, whatsoever she asked beside that which Solomon gave her of his royal bounty."  1Kings 10:13

I am a gift giver.  Dare I say I am perhaps one of the best giver of gifts I know.  I do not share this in pride but humbly in gratefulness to a Father who bestows on each one of us certain ways we can best serve Him in the Kingdom.  It is a love language God granted to me.  I can honestly say there is nothing in this world that brings me greater pleasure than seeking out a treasure for someone dear to me and sometimes even more so for a stranger.  I am always looking and always thinking of who might need an encouragement in word on beautiful paper or in gift tied with ribbon and love.  When my husband first met me he would marvel at the "gift closet" I kept full of specific baubles chosen for birthdays or events maybe even months away and many "just because" I had already found exactly the right thing for someone who had no occassion at all except to be surprised and loved.  He scratched his head as I would often spend my "disposable" income and free time buying gifts for people he did not consider important in our lives and certainly not someone who would ever reciprocate.  As years wore on he began to see the heart I was given to share and bless had little or no expectation for gratitude from the recipient.  My joy really has always come from the giving.  We still joke that if I had $100 left to my name I would spend $75 of it on someone else and the rest on a book of poetry and a Starbucks.  I see life through these eyes. 

People talk a lot about "karma" and what goes around comes around and other pithy sayings communicating how the universe will even itself out in the end.  You get what you give, right?  Never could I have imagined how the seeds of love I planted year after year in people and places no longer a part of my life in any way could have drifted on the winds across the landscape of dry and barren soil and taken root here in rich black need to grow the most beautiful gifts of sacrifice and service I have ever been part of.  This garden planted by many of YOU has literally fed and clothed my family and I for years now.  It has given us hope when one more day seemed impossible.  It has been fertilized by the compost of pain and loss and promises to yield a harvest still immeasureable by those of us who watch and wait. 

Only a few times in my life has the giving of a gift proved hard (and by "hard" I don't mean other gifts were not a sacrifice, but these were things I clutched as personal lifelines.)   Once was a necklace I've written about before that was a very special gift from my husband to me.  I gave it to someone experiencing the greatest loss I could imagine.  It was truly the ONLY way I could think of to tell her I cared that much.  The second was a book.  It was a beautiful blue bound volume of Frances Ridley Havergal poems I found as a young teenager in a precious used bookstore in Chapel Hill, North Carolina.  The lettering was in gold and a stunning gold harp was on the cover.  No matter how far I strayed from God in my prodigal years or what back alley or crack whore basement I woke up in during that wandering time this book stayed with me. 

The week before my surgery I received a package from a young woman who is knit to my heart as surely as my own daughters are.  This friendship and love born in cyberspace is one of God's greatest mysteries to me in a plan I can only see in very small part even now.  She gifted me a perfect little red volume written by Frances Ridley Havergal titled "Royal Bounty."  She had tied it with a beautiful white ribbon and her note to me was written on stationary with a simple Golden Wattle on it, Australia's national flower.  The book is divided up into a month of readings.  The first evening's selection reads this:

"ALL God's goodness to US is humbling.
The more He does for us, the more
ready we are to say, ' I am not worthy of
the least of all the mercies, and of all the
truth, which Thou hast shewed unto Thy
servant/* The weight of a great answer
to prayer seems almost too much for us.'
The grace of it is * too wonderful *" for
us. It throws up in such startling relief
the disproportion between our little, poor,
feeble cry, and the great shining response
of God's heart and hand, that we can only
say : * Who am I, O Lord God, that
Thou hast brought me hitherto ? Is this
the manner of man, O Lord God ? '*
But it is more humbling still, when we
stand face to face with great things which
the Lord hath done for us and given us/
which we never asked at all,'' never even
thought of asking — royal bounty, with
which not even a prayer had to do. It is
so humbling to get a view of these, that
Satan tries to set up a false humility
to hinder us from standing still and con-
sidering how great things the Lord hath
done for us ;* thus he also contrives to de-
fraud our generous God of the glory due
unto His name.*

For, of course, we do not praise for what
we will not recognize.

Let us try to baffle this device to-day,
and give thanks for the overwhelming
mercies* for which we never asked.

* Blessed be the Lord, who daily loadeth
us with benefits." Just think of them
deliberately (they are far too many to
think of all in a flash) ; and how many did
we actually ask for? Even that poor
little claim was never brought to bear on
thousands of them.

To begin at the beginning, we certainly
did not ask Him to choose us in Christ
Jesus before the world began,* and to pre-
destinate us to be conformed to the image
of His Son.* Was not that * royal boun-
ty ' indeed ?

Then, we certainly did not ask Him to
call us by His grace ;'* for before that call,
we could not have wished, much less
asked, for it.' Then, who taught us to
pray,* and put into our entirely corrupt
and sinful hearts* any thought of asking
Him for anything at all?* Was not all
this ' royal bounty ' ?

Look back at our early prayers. Has
He not more than granted them ? did we
even know how much He could do for us ?
did He not answer prayer by opening out
new vistas of prayer before us, giving us
grace to ask for more grace, faith to plead
for more faith ? Why, it is all ' royal
bounty ' from beginning to end ! And
this is going on now, and will go on for
ever, when He has brought us with glad-
ness and rejoicing into His own palace.'
Not till then shall we understand about
those riches of glory in Christ Jesus," out
of which He is even now pouring out the
supply of all our need.

The marginal reading is very beautiful ;
it is, * that which he gave her, according to
the hand of King Solomon.* We may
link this with David's grateful words :
* According to Thine own heart hast Thou
done all these great things ;'* and again :
** Thou hast dealt well with Thy servant,

Lord, according to Thy word.'* His
hand, His heart, His word — what an im-
measurable measure of His bounty ! The
great hand that holds the ocean in its hol-
low* is opened to satisfy our desire,* and
to go beyond that exceeding abundantly,*
giving us according to the heart that * so
loved the world,*' and according to the
word'' which is so deep and full that all the
saints that ever drew their hope and joy
from it cannot fathom its ever upspringing

Perhaps nobody knows the Bible well
enough to know the full significance of
saying, ' Be it unto me according to Thy
word ;' * how much less can we imagine
what shall be the yet unrevealed royal
bounty according to His heart of infinite
love and hand of infinite power ! * What I
do thou knowest not now, but thou shalt
know hereafter. ** * And ye shall . . .
be satisfied, and praise the name of the
Lord your God, that hath dealt wondrous-
ly with you.*"

Today, my infection is much better.  As the day wears on and my pain increases I remember where I have been and how far He has brought me.  I have a pile of folders here full of medical bills that I may in this lifetime never really pay, but I have every single thing I need today and oh so much more.  My real debt is paid in full, my friends.  My heart is full as I stand in the cold spring wind on the side of a field plowed deep and planted early with seeds pregnant with royal bounty He gave from YOUR hands to ours.  Won't you watch with me?  Won't you pray with me?  Won't you praise with me?  He has dealt wondrously. 

When this passing world is done.
When has sunk yon glaring sun,
When we stand with Christ in glory.
Looking o'er life's finished story,
Then, Lord, shall I fully know —
Not till then — how much I owe !

R. M'Cheyne.

Monday, April 9, 2012

At the end of THIS day.

Sometimes when I wake in the morning it is as if I've never really slept at all.  I have been up hour after hour wrestling with things too heavy to even whisper in the secret places where only God and I meet. I call these "unspoken" prayers.  I know by now God does not need to hear my voice to know my heart.  The pillow soaked with tears speaks volumes.  The Spirit intercedes when I cannot.  I think of my friend, David, the man after God's own heart, who hid for so long in caves crying out to His God to show His face once again and remind him why He had called him here at all.  What in the world was He accomplishing hiding him in the clefts of remote hills.  Why would God keep him so hungry, ever thirsty, always afraid, cold and hurting with bones out of joint? 

I use my ipod a lot on sleepless nights.  This began years ago when I would fight off Satan lying in the hospital while I was pregnant with Danica.  It's easy to say I've never been under siege like I was then, but in every way it is true.  I wasn't just fighting for my own life then, I was fighting for Danica's too.  The drugs and the psychological and spiritual warfare broke me in places I may never know full healing until eternity. 

Sometimes I wish I could post a soundtrack of my journey.  I have made many of you faithful ones CDs when you have been hurting or suffering with some of the music that has rescued me.  These songs are the greatest gift I know to share with you.  There is a beautiful song by Meredith Andrews titled,  All Will Fade AwayI have played it literally hundreds of times over the past few years.  I recite in my mind this Scripture from Revelation 22:1-5 before I play it.  (If you are engaged in any  kind of spiritual warfare I can tell you with certainty to get in the Word, memorize the Word, listen to hymns and spiritual songs and Satan will run away!)

Then the angel showed me the river of the water of life, as clear as crystal, flowing from the throne of God and of the Lamb down the middle of the great street of the city. On each side of the river stood the tree of life, bearing twelve crops of fruit, yielding its fruit every month. And the leaves of the tree are for the healing of the nations. No longer will there be any curse. The throne of God and of the Lamb will be in the city, and his servants will serve him. They will see his face, and his name will be on their foreheads. There will be no more night. They will not need the light of a lamp or the light of the sun, for the Lord God will give them light. And they will reign for ever and ever.

When I woke this morning I didn't know if it was sunny out or if the birds were singing or if redemption would come in any more tangible way than it did yesterday or the day before.  I only knew one thing for sure.  I have to get up and do this again.  Somehow by His Grace He will walk me through.  Can I get caught up in Jesus again today?  Can I imagine all this will disappear? Can I really be okay with knowing I am just a stranger here? 

Caught up with Him forever.
In love with Him forever.
I will see Him face to face and all will fade away. 

No more night.  The Lord God will give me light. 

Forever and ever. 

I swallow my pills.  I cry and then blow my nose and put on my big girl britches. 

A day is like a thousand years and a thousand years is like a day in this world.  There's no end of time with Him.  At the end of THIS day, will my heart look like His heart?  The rest will fade away.

(Please do link through to the two songs highlighted here.  I pray they will bless your heart as you face your own Goliaths and long for whatever pain you face today to fade away.  STRENGTH.  HEALING.  LOVE.)

Saturday, April 7, 2012


We say, then, to anyone who is under trial, give Him time to steep the soul in His eternal truth. Go into the open air, look up into the depths of the sky, or out upon the wideness of the sea, or on the strength of the hills that is His also; or, if bound in the body, go forth in the spirit; spirit is not bound. Give Him time and, as surely as dawn follows night, there will break upon the heart a sense of certainty that cannot be shaken. – Amy Carmichael

I hear a constant creaking in the floor above me.  I don't even know if it's a person or the washer or dryer or a ghost, but it's driving me out of my ever loving mind.  I need everything to stop.  I need the kids to quit running around screaming at the dog about a Barbie shoe she's stolen.  I need to stop hearing my husband curse under his breath as he moves through another impossibly painful day without any meaningful contribution from his wife.  I need someone to quit walking across the kitchen floor to the refrigerator and filling their cup up with ice and then the water, then walking over to our door at the top of the stairs and stopping to listen and hear what is happening in our world.  I need to be alone.  I NEED TO GO HOME.  I don't know where or what that is anymore, but I need it with every fiber of my being.  Before we left for my surgery I bought the girls a cardboard house from Walgreens.  I loved it.  I told them they could work on getting it all colored while I was away.  I loved it like I love Eloise Wilkin's illustrations of perfect little homes on tree lined streets with built in bookshelves and daddies who wear cardigans and mommies who read Robert Louis Stevenson poems before bed while a breeze blows through eyelet curtains.  I want that home.  I would get better in a house like that.  I know it. 

A week ago they released me from the hospital in Maryland.  I could fill in the details about how the PIC I knew was bad was in fact bad and how the mean nurses have so little power next to the kind ones.  I could write about the night I quit breathing and scared everyone and how I tinkled the first try after my cath finally came out.  (I know this is because you were praying!)  My dear nurse Sudha had the paperwork all ready early last Saturday and when Dr. Henderson came in my room wearing his beautiful navy blue Brooks Brother's blazer and pink tie he asked me, "How are you, princess?"  I always tell him I am okay even when I want to say a million other things too.  If I could have lunch with anyone in the entire world dead or alive I think I would choose this human being.  I have never wanted to understand more how one person can do what he does as well as he does for as long as he has and still face someone like me on a Saturday morning as if I was the only person on the planet and smile the most gracious smile and know he means it.   He fixed me in ways no one else in this world could.  I believe this and claim it because God gave Him every piece of wisdom and power and Grace to do what He does.  I always hug him, and the last thing I say to him every single time is, "I pray for you.  Every day, I pray for you."  We drove a few blocks to the hotel.  I crawled into bed.  My prescriptions were set up like a street dealer on the nightstand beside me.  Anything you could want or need I could provide you.  The printout from the hospital helped make some heads or tails of the timing and reason for the over twently kinds of pills I was now consuming.

My Dan has been auditioning for this role for over a decade . . . no, really since he was a boy watching his mother slowly die in their dining room turned hospital room.  He needed no practice as he checked my dressing or jumped up to get me water, gingerale or a cracker to nibble on.  This woman beside him was the girl he never wanted to end up with.  She was the sick girl.  I am the woman who has been in and out of the hospital for years, sometimes laughing at the irony of it all and sometimes sobbing because if I could make it any different at all I would if for no other reason than to rescue him from having to live like this, the one way he really, truly didn't want to live or love. 

(Someone is "home" again upstairs.  I can hear them go to the bathroom, flush, stomp from room to room, open the back door, stomp some more. . . There is no room in the heart of gratitude for this place right now.  GO AWAY.  BE QUIET.  STOP WALKING.  STOP TALKING. . .)

I know I keep saying I will write about THE love that made my surgery possible. I have in fact written about it already.  There are drafts saved and revisions of drafts saved.  I falter over expressions too trite and words used too much to tell the story of Kristin and Mellany and their "Run for Monica".  Kristin came to see me at the hotel last Sunday.  This unlikely of friendships formed over an email here and there through the first years of our journey with Danica.  I now call her the champion of the only REAL healthcare plan that will work in this country, the only one that ever worked.  It's quite simply people loving people.  Each one of you who gave to my family and I have effectively changed something in the world.  Your love brought me to the doctors I needed to see and the care I needed to receive.  This is beautiful.  I hope you sit with it for awhile and know this is just one of many ways we can take back the freedoms we are losing.  Love always wins.  Kindness always matters. 

I have a kidney infection.  I need to see a doctor.  I need more pills.  I refuse to see an urgent care physician.  I refuse to tell my ridiculous story to a doctor who quite honestly doesn't care how remarkable my journey has been to get a scrip for an antibiotic for some bad pee.  I will wait until Monday and see my "REAL" doctor.  This also means I will suffer through some more uncomfortable symptoms.  I don't think I could ever explain to you, "the happy people", who will shop last minute for Easter tights and find eggs with treats hidden in daffodils and forsythia bushes and make Resurrection cookies what it feels like to be THIS family another year.  What if we are forgetting what it's like to be just even a little okay?  What if we forget how to celebrate at all?  What if our hope does eventually disappoint? 

Last fall I wanted fabulous cowgirl boots.  They were to celebrate making it through my brain surgery.  They were to remind myself and everyone else, "This ain't my first rodeo!"  They were to return the authentic part of Monica I have slowly lost in every ER triage room and operating room and surgery recovery room.  I didn't buy them.  I mean I don't go anywhere anyways, right?  And the guilt of buying anything for oneself when people are donating money to you is one of the painful pitfalls of living in charity.  You feel as if every penny is under scrutiny.  This spring I wanted bright green rubber Welly boots with daisies. I wanted to walk with my Danica and splash in puddles.  I wanted to take her to the park and watch her play and not yell, "No!" once.  As it turns out I couldn't really take walks, and it didn't really rain, and I haven't been to a park in over a year.  Now I dream of flip flops.  A simple beach house, no other family, just us four, and sand in our toes and sun in our face and a real window I could leave open at night and hear the breeze through and maybe even the distant waves.  You'd think I would stop dreaming of silly shoes and places they might take me away from this bed and this basement, but I don't.  I collage every quarter a "vision" for my life and every single time I include a pair of shoes.  I want so desperately to move anywhere past this place. 

For tomorrow I wanted orange rolls, mimosas and our own celebration with our own ham and a banner shouting "HE'S ALIVE" and pictures of our family smiling and praising and living even just a little because that's why He died, right?  That's why He didn't stay there in that tomb?  So we could live life MORE abundantly?  So, why does it feel like He's just gone?  Am I going to find Him?  Will He look different?  Will I recognize Him?  Am I even ready to see in part this glory? 

This morning I called my husband into the bathroom to check out the toilet.  He hates this.  He hates it when I ask him to feel a lump on my head or a bulge on my neck and cringes when I need to talk about anything health related.  He came in.  It was bloody.  Not like a few drops of Easter egg food coloring that make the entire thing of water and vinegar red but the kind you know came from pain and fear and clots and definitely not normal.  I don't freak out.  I almost never freak out about anything any more.  I ask him in a shaky voice, "So, what do you think?  Is this is a problem?"  I have had bloody stools for over three months.  I haven't told anyone.  Frankly because I am on complete overload and wouldn't know how to move forward with another health problem if it arose.  It hurts to sit and lay and walk and talk and yes, it is most likely a problem.  "Thanks, honey for checking it.  It scares me, and it makes me feel better knowing you have seen it too."  This man definitely didn't choose to live or love this way.  But he does.  Over and over again he does. 

My surgery was a success.  I know people come to this blog for medical details, and I want to give them but today the words are just a bunch of mumbo jumbo in a big pot of stone soup made up of an incredible sadness I cannot describe.  I should be joyful.  I should be grateful.  I should be hopeful, but He is not here.

Over and over again I have striven to be honest and to point to Him as I write here.  This afternoon I can tell you I have cried my eyes out for hours today.  My heart is breaking as if I don't understand a word of what He's promised me about His Resurrection and Home.

Today I am looking for this certainty, “Since, then, you have been raised with Christ, set your hearts on things above, where Christ is seated at the right hand of God. Set your minds on things above, not on earthly things." 

Healing is there. 
Home is there. 
Hope is there.

He is there!