The Journey Continues

Happily Waiting....Not.

I once asked a five year old friend to tell me what the word patient means.  
She said, "Patient means happily waiting."
Isn't that a great answer? 
I am here to tell you that I am NOT happily waiting as we go through the maze of getting set up with the next neurosurgeon in Charlottesville.  
I will not get an award for patience on Awards Night.  (When is that again?)
But....And so....life goes on...
Just this morning Taylor and I were out walking when we crossed paths with two lovely church ladies.  Honestly, I just wasn't in the mood. 
They had their pamphlet ready from 20 feet away. 
I needed a plan---other than being rude. 
So, here it is:  I pretended to speak only French---which left them with just Taylor with whom they could share and try to converse (Spoiler: Not very successfully).
I said, in French: "Je me demande s'il est dangereux de patiner aujourd'hui."
Which means (in french) "I wonder if it's dangerous to skate today."
The two very kind Christian ladies glanced at one another and smiled knowingly as if I had a mysterious and fatal disease.
Just to confirm that I would not be joining in the (English)  Jesus conversation, I solidified my french heritage by asking, "A que fait ce château appartient?"  
 Which, of course means, "To whom does this castle belong?" (As far as I can remember from Ecouter et Parler  Book 1 in 10th grade.)
I think I had the nice church ladies convinced that I was, in fact, an older, visiting au pair, now graciously walking her "charge".   Ah, bon!
Taylor was handed the pamphlet and invited to join them at worship. 
They asked him, "Young man, how do you know Jesus?"
Taylor  stared, then replied,  "Boo."
That's pretty much what he says these days.
I wonder what they thought.  Mon Dieu.
At least he has the literature for further reading. 
But anyway, I had to get home so I could continue not being patient--and brushing up on my French.
I love this world we live in.  So many people on our paths.
Ecoutez. Yes, listen.
And speak in your favorite language.
Boo.



 

U-Turn

Wham.
Let me see.....I am on....we are on a roller coaster ride.
United Health Care denied us twice with our request to allow Taylor to have surgery with earth-angel and expert, Dr. Vincent Traynelis in Chicago.   So March 23 surgery is postponed.
  We have been referred to Dr. Chris Shaffrey at the University of Virginia Hospital.  Dr. Traynelis is setting this up for us.
I have a grateful heart. 
We are being guided---no doubt.
Stay with us, please---

Glad for the light of morning

Before Enlightenment:  Chop wood; carry water.

After Enlightenment:     Chop wood; carry water.



This is such an intense time in my life and in the life of my family. 
Mostly I am so mindful of the kindness of friends and strangers. 
Kindness brings me crumbling to my knees.  It is like grace.

Sometimes the clarity of this life is blinding to me.

During other hours, I am without sight of any kind.  I fumble and fall.

And still there is wood to be chopped and water to be carried.

When I am not gripped with fear, I am mostly so grateful.

Life can be so tender. 

I want to always be mindful that we are sacred---all life is sacred.

And I need to do sit-ups.  And get some new eye liner. And feed the dog.

And sing.



Many Things are True at Once

It is a beautiful day.  That is true.
I am full of angst.  That is also true.
I am so thankful for so many things. 
Many things are true at once.

Songs of Wailing and Thanksgiving

Last night I heard from a doctor who knows Taylor and whom I really trust.  He does not like the idea of Taylor having a full fusion.   As he and I were talking (on a Friday evening; his office had long since closed, he had family he needed to be with and yet he was talking to me...), I was thrown into a sort of despair.  

WHAT ARE WE TO DO HERE???

  I woke up this morning wailing.  I mean it.  Crying out for help.

I could have written the book of Lamentations: 

It is called in the Hebrew canon 'Eikhah, meaning "How,"

 being the formula for the commencement of a song of wailing.

I felt lost, abandoned, without guidance.

That still, strong voice inside of me spoke, "Do not even put on your bra.  DO comb your hair. Go in your pajamas.  Maybe wear a thicker shirt.   But go to your neighbors, Jane and Jim.   There you will find what you seek."

So I did.  With my coffee cup, wearing Taylor's Crocs, and looking like a pitiful homeless woman, I crossed the yards to Jane and Jim's back door.  I could see them through their bay window, sitting at the table.  They were having their morning devotional.

In I walked..taking my puddle-of-a-self with me. 

Jane was reading from Psalms Now.

She read one Psalm after another out loud.

Cell-by-cell, pore-by-pore, tissue-by-tissue, muscle-by-muscle, every part of me began to relax.

We held hands and talked/prayed in ways that were meaningful to each of us---each having our own concerns and confusions. 

We laughed loudly a lot! 

I was irreverent and sacrilegious---profane and holy.

It was really neat. 

I sang a song of Thanksgiving.  That's pretty darn cool, let me tell you.

I have my bra on now.  

Uplifted in every way.  (Oh Lord....how corny can I get????)

Another day on this journey .....towards wholeness.  

So hard.  So interesting.  

So full of wailing AND thanksgiving.

Fear Whispers

Oh my goodness, I say out loud that I am committed to being honest on this blog.  In theory I think that I want to "embrace" my fears about.......well, about life, liberty and the pursuit of happiness---but specifically...about Taylor's sugery and how mammoth it is. 
But right now my thoughts are slip-sliding into fear---I am afraid.
My stomach knots up as I picture Taylor  in ICU.  Will I handle it? What does handling it look like anyway?
If I throw up from fear....literally....does that still count as handling it? How will I know I have done the right thing with all of this?
     Today Dr. Traynelis (Chicago/neurosurgeon) is making a phone call to Dr. Doerr in Athens.  They will talk "doctor talk".  In my mind I hear whispering and bad things---like things they would not want to tell a mother.   But...is this true?  And what does that mean?
    So here is what I am hoping for and praying for in my secret gut of guts:  I hope that the MRI indicates to Dr. Traynelis that Taylor's spine is secure enough so that he will not have to do a full fusion---all the way down Taylor's upper back.  That just sounds...and is...so brutal to a human body.   Will Taylor be able to withstand that much trauma to his precious little , 150 lb., frame?  Will he be scared?
I am hoping against hope (wow...what if I hoped WITH hope)...that this master complex spine surgeon will decide that it is enough just to fix what was done back in June.  I could so handle that.
So, it's out there.  My whole body is wearing this fear.  I want to face it---and say it out loud. 
Looks like I just did say it out loud. 
Letting light in to fizz out the fear.
Maybe that's what healing is.
In your own way---in a way that makes sense to you---please pray for healing---
Healing within.  Healing in the body.  Healing in spirit.  Healing of the aching heart.
UPDATE Since I POSTED THIS earlier today.   I sent this email to a few people:

I just talked with Dr. Traynelis’ office.   Dr. T reviewed Taylor’s MRI from Tuesday and is firm that Taylor needs a  full fusion from C-1 to T-1 with removal of the “instrumentation” that was put in at Johns Hopkins in June.

I feel sick.  That is a normal feeling, right?  I would be weird if I weren’t crying.

Dr. T. tried to call Dr. Chris Doerr yesterday but couldn’t get him---and is trying again this morning.   He will give Dr. Doerr all of the codes so that Dr. D. can call insurance on Wednesday---with me sitting in the office acting normal (as if).

    If none of this makes sense….it’s ok…I just needed to tell you.

Taylor is going to hate my guts.  I hated my parents when they made me get my cavities filled.  Is there a proxy parent I could hire here?

Thank you for reading, for loving me (assuming that you do) and for giving a rat’s ass.

( I just had to cuss!)  marianne