Surgery---Our Reality Summit

Sitting here in ICU with my beloved son (with ONE of my beloved sons!).   I have never hada  child who needed a breathing tube, feeding tube and a catheter.   I have cried a lot and lost my cool at times. I have not been brave when I wanted to be.  But,  I know that Taylor is in good hands any way you want to see that. 

   I am thankful for insurance, for a skilled neurosurgeon, and for the many miracles that got us to this place.  We have met other families here in the ICU with poignant and riveting stories.  This is where the fragile side of life shows up bare naked.  It's amazing to me what families go through. 
   And then I can look out this window at the city of Chicago.  The NATO summit is gearing up---but I don't care.   Maybe I should.  Do any of those delegates have a son in ICU today?  I wonder.  My world seems so small and yet I am being carried by an expansive network of loving friends from all over the world.  We are holding our own summit.
  I KNOW you are  out there because we feel you  IN HERE with us. 

The Day Before Surgery

Inside Out

I looked down at Taylor's feet yesterday and realized that he had worn his Crocs on the wrong feet all day long.  They just looked so weird and ill-fitting.   I'm going to say, "Bless his heart" now.  Bless his heart; he didn't even notice.  Gulp.  I know. I know.  There are worse things to worry about.  But seeing those shoes so lopsided and on the wrong feet----pointing the wrong way---just struck me at a very delicate place on my insides.
       Taylor is facing major---bigger than major surgery a week from tomorrow.  That means, of course, that my whole family is facing major surgery along with him.  Right about now, my life feels like I am wearing my shoes on the wrong feet.  Nothing fits right.  Things are awkward.   My clothes are inside-out. Tags are showing.  Seams are ripped and visible.  Zippers are off their tracks.  Buttons are hanging by a thread----this is how my life appears from my own inner eye.
     Bless his heart----again.   Taylor thinks we are going to the beach next week.  He thinks he will be on a float in the Gulf.   Even with his very limited understanding and ability to comprehend, he picks up on my fear(s).  He senses that something is askew;  When Taylor wants to know more about what I'm talking about,  interestingly he asks, "Where?"  When he asks "Where?"  he wants more details about what's coming up.   And he persists, "Where?"    Where means, "Where are we going?  Who will be there? What movies will we take? Will we spend the night?"  Where means, can he get a hamburger?
      So, here's what I know.  My life is NOT normal.  Shock! I am actually not just coming to terms with this, although in all honesty, every single day, I get a new glimmer of how I must adjust. Seems like I would have  had it all figured out by now.  Nope---still grappling with what "should have been".
       Today on my walk what hit me as I was trying to figure out why I was so weepy.....what hit me is that I realized that in this life I have been given a gift---a very precious and rare gift.    Having been given Taylor, I have to be even more careful with my decisions and plans because I am taking care of two lives in essence----my own---and his.   That's a pretty daunting task I'd say.  Some days I can barely manage my own life, but I never get a reprieve from being asked to handle Taylor's life with absolute care.  Making the decision---on Taylor's behalf---to have the trauma of another surgery is almost too big a decision for a mother to make.  But I have.  And I am taking care of this precious gift of a son.  It's my job.    Pure and simple.   And it's hard.  But there are many hidden treasures in hiding along the way.  I'm not sure I'd notice them so readily if his shoes were on straight.  It really does force me to learn from my "double takes" to realize that that which is not perfect offers so many rich lessons and blessings.   If I'm willing to see them. 
      I am scared for myself----for Taylor.   But I have hope and faith and courage (well, my courage comes and goes.)  If you are reading this, would you please say Taylor's name on May 16 early in the morning? And then say it again as often as you can for the next 12 hours until I can hold his hand again.  My sweet gift.

    
    
   
    

Easter Morning without patent leather shoes

Taylor and I delivered an over-flowing Easter basket to Cole and Sarah this morning.

We knocked on the door (although Easter bunnies don't generally knock) so we could hand deliver the chocolate and goodies.  When Taylor saw his brother, he said, "Happy Easter!  Trick-or-Treat!"

 I guess he sort of lets all holidays run together---especially those that involve knocking on a door and candy being exchanged in one way or another.  I, too, get confused about holidays.  What Taylor said actually sounded pretty good.   So, to all of my (wonderful)  readers:

Happy Easter! And, Trick-or-Treat!

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

MRI....Step # 962 up this Mountain

I was sitting in the pre-op room at the hospital today with Taylor as we waited for his MRI with sedation.  That's not an accurate term as it turns out; it should be called an MRI, done in an operating room, with a full "knock-out".   For an MRI!!!  Whew.

I really sat there wondering about my life and how come it was that I couldn't just be at Macy's trying on wide-width shoes.  Is that asking too much?

 BUT!  It's done.  And the CD has been over-nighted to the neurosurgeon in Chicago. 

So, we are one step closer to knowing something.....anything. 

I  am ice-picking my way up a slippery slope.

 The foot holds are not clearly marked.

I'm not sure where to grip to keep from falling.

While Taylor was "under"and being intubated (now THAT will hold a mother's heart hostage),  I looked over at his little bag of "what he came in here with".    Little  gray sweat pants, boy-size socks, a small man's white t-shirt...and that darn ubiquitous neck brace.

Uh-oh---there came the tears. 

How do I care for this man/child?

When will we figure this out?

I had my 7 minutes of falling apart---and then I saw some women who should have been on

 "What Not to Wear".   I stopped crying and gave into being judgmental.  It was such a relief.

I sat in that waiting room, doing mini-make-overs for them in my mind.

I wonder if they were silently praying for this weeping woman holding the neck brace.

Isn't life just so layered and complex?

Please pray for foot-holds and hand-holds that are within reach--even if it's a stretch.

Holding Pattern

We are in a temporary holding pattern.   Thank you so much for all of these ultra sensitive, thoughtful, compassionate emails and responses that you have sent to me.   I am anchored in your love.
Boring update:
1.   Tomorrow Taylor has Pre-op for his MRI next Tuesday.
       He has to be put to sleep for the MRI--it's a new thing for those who need sedation. 
       Hence the Pre-Op.   Arrghhh.
2.    I will over-night the MRI CD to the neurosurgeon in Chicago on Tuesday after the procedure.
3.    Dr. Traynelis will review the studies and decide what he is going to do to/for Taylor.
4.    He will call Dr. Doerr here in Athens---who will fight/go to bat for us with United Health Care so
       that we can afford to have Dr. Traynelis be Taylor's neurosurgeon.
      At our meeting in Chicago with Dr. Traynelis he said, "I would really love to be the doctor who
      finally helps your son."
5.   So, there you have it.  We will go to a huge PLAN B if insurance denies all of this.   Gulp. Throw
      up.
6.   Hope WITH us---for us, beside us, around us.  HOPE.

Keeping Stuff In

I see why families who have a problem child or an unhealthy marriage or something  "wrong" within the family---I see why they/we/I become isolated.  None of us wants to show the world our weakest sides---our most vulnerable parts.   Right?  At least I don't.   And so I hibernate/isolate/close in/draw my own wagon in closer to home.
   A therapist once told me.....ok, ok....last week my therapist told me, "We all try to pretend like we're God when we're in public.  Very few people have a congruent public and private life."
 Do you think that's true?
   That goes along with the true statement (yes true statement) that we are only as sick as the secrets we keep.  I have worked pretty darn hard for the past ten or so years to just give up secrets period.   That does not mean that I give up having boundaries and privacy---but sick secrets----not for me anymore. 
Here's my secret:
      As Taylor gets worse, I do not like to go in public with him anymore.   Just since his last surgery seven months ago, something has gone haywire in his neck and he has developed tourettes-like mannerisms.  He shouts out, makes loud/odd noises/ and just plain acts weird.   It drives me bats.  I lose patience.  Sometimes I forget to breathe. 
I am 100% sure that after he has the next surgery that this will all go away.   At least that's what I believe.   Actually, I am not sure what to believe anymore.   That's a bad place to be in. 
So....my secret is out with you:  I hate taking Taylor in public anymore.  He's loud.  He's never been loud before.  He's in a neck brace.  This is off-putting in and of itself.  And then he has these out-bursts.
So, the other part of my secret is that I have all of the negative self talk that clogs up my daily affirmations---kidding---I mean, I talk to myself in a way I would never talk to a friend.  I tell myself I'm not a good mother because I don't know how to do this.  It's irrational---no doubt.  But it's like doing 300 crunches in a row to make myself interject a new thought around what kind of mother I am.
   Well, the secrets are out.  Whew.  Now that wasn't so bad was it?  That is step one.   Say it out loud. 
This is my saying it out loud.   It still makes me want to isolate myself because....I---like YOU---want to be perfect.   Even when I can't be perfect.....I will die trying.   Damn.
       I want to be brave.  I want to be honest.  I want to live an honorable life.  And have sex.
What's so wrong with that?
Dear Diary.   This may be too raw for some people.   Sorry about that.   I am living in the eye of a storm---an emotional storm and a spiritual storm.
  God, please keep my boat upright and afloat. 

I think the motor already dropped off.  It's ok.  I've got oars---if I can find them.

Dear Diary



Taylor on the train to NYC at Christmas

Dear Diary,
    I think I need to start writing down some stuff.  I will probably want to look back a year from now and check to see if we all made it through.  I hope we do.   Seriously hope.
     Taylor is scheduled to have a full spinal fusion on March 23 at Rush University Hospital with Dr. Vincent Traynelis.   This operation will take 10 hours.  Dr. Traynelis has to first remove the hardware that was put in just last June 27 at Johns Hopkins.   That surgery was not a success---understatement.
     Big hurdle to be able to use Dr. Traynelis:  Get insurance to approve out-of-network costs. 
This mountain is high.  Is it insurmountable?  Today I wish I were the sister of the CEO of United Health Care.   Certainly some doors would open. 
      My stomach stays in a knot.  I mostly stay nauseated (or is that nauseous?).   I can't get words like feeding tube, breathing tube, ICU for five days out of my head.  I am gripped beyond ....beyond.....what?  Beyond what I want to be.
      So, MRI with sedation is scheduled finally.   (Brokering peace between Israel and Palestine would have been an easier task.)  Five minutes ago the hospital called and asked to speak to William Taylor.
I, busying around in my kitchen responded, "Oh, he has Down Syndrome and basically can't talk.  I am his mother and legal guardian.  What's up?"
    Hospital employee:  "Oh, we are not allowed to talk to you---HIPPA laws and all.   We do not show any paperwork here that you are his guardian."
    Me/The mom/Legal Guardian:  "I have the papers here.  I have given them to you many times.  They should be in your file.  Is this in regards to the MRI that we have (finally) scheduled?
     Hospital Employee:  "I am not allowed to tell you."
OK....world... this is just one little bitty example of "There are too many  rivers to cross"...for THIS mama!   Where is my shotgun?  (Kidding!)  No seriously, where is my shotgun?  (Kidding.  Sort of.)
My question for today to myself for my own personal growth---because by G_d, I sure do want to grow through this process.   My question for today:  How do I let go of being in control?
In control of the whole darn planet....in control of hospital policy...in control of somebody else's healing? 
I know I know I know I know that poster/bumper sticker/coffee mug/tee shirt that says, "Let Go and Let God."   BUT.....where is the step-by-step procedure to be able to do that????
   Hear my prayer O Lord.   Hear all of our prayers. 
 Dear Diary.  I am on a journey that is scary.  I do not know how to navigate my way through this.

 What do road signs really look like when something this big is happening in one's life? 
 These signs--- Make them clear. 
Please.
Clearly marked. 
Well lit.
Easy to read.
 In color.
 BIG.
To light my way.
  Love, Taylor's mama

Insert your own picture here.

From "If You Want" by St. John of the Cross

Either Way I'm Celebrating

    I am pretty darn funny----at least that's what I've been told all of my life.    Some people---ok, MANY people describe me as being irreverent---maybe even blasphemous.  I swear I'm neither.  I just have a hard time not laughing out loud when all of the costumes and masks we all keep squeezing into---have "malfunctions"---and the disparities and incongruities and "real--ness" of our lives come roaring out.  As hard as all of us may try.....life is real.   There is not enough lip gloss or letters after our names or condos on Sea Island to smother what our souls long to LIVE out.
(That was a dog-gone long and winding topic sentence.)  I could have just said, "I say stuff that most people don't say---especially when a situation feels weird.  I sort of appoint myself as the "Truth Fairy".   It's not always a good thing.   I have never been good at denying  that the  emperor has  no clothes.   Which leads me to how I talk to my doctor.
So, last week I went to my family doctor  and  sat there and cried. 
Here is how the conversation went:
Me:  Dr. J., I just don't think it's fair that I'm fat......AND have a retarded son.
Dr:   What is it that you want out of life, Marianne?
Me:  I want to look great naked!!  I want to be thin like everybody else I know.
Dr:   Seriously, do you think being thin would make you have the life you want?
Me:  Absolutely.  I am 100% sure that this is all I need to make my life perfect.  Can't I just raise   
         Taylor AND look great naked??   Can't I have both?
Dr:    (Laughs....shifts his feet around....laughs.  Was that a "No" or was that an "Your eight minutes
          are up?")

     I wonder if you're reading this, what ONE thing it is that you might long for---or might have convinced yourself that if you had....that your life would be.....better/perfect/just right.   My guess is that we all have that one thing.   Mine just happens to be ......about weight.  And, I ask you, is it an illusion that there is something OUT THERE that will make life better?  (I already know the answer to this in my head.)   Why are we so lured into that belief that says:
"Life will be good when...or life would be good if.....".
 What a trap that catches us in---and I walk into that trap daily!

 Maybe that scene from the  movie  When Harry Met Sally  re-cemented this myth  when the older woman customer says to the waiter, "I'll have what she's having."  Somebody else appears to be having it better/easier/thinner/richer/smarter----so, yes, of course,  "I'll have what she's having. I assume that she must look great naked.  Her life, I bet, is perfect."  Myth.

Obvious segue:
Eckhart Tolle urges us to:
"Wherever you are, be there totally. If you find your here and now intolerable and it makes you unhappy, you have three options: remove yourself from the situation, change it, or accept it totally."
So, as a student of life.....
Accepting Taylor for Taylor is an on-going journey.  I am doing my best.
And, I am working hard to change what I can so I can "Have What  I've assumed she's Having."
 But, if I can continue to laugh and live a  life in which " Wherever I am, I can be there totally"---
Even if I don't look great naked......
Either way, I'm celebrating.
I'll send pictures.

Moving Forward....Or At Least...Moving

          Truthfully, I don't even know where I might tell you I've been for the past four months.   I might say, "Inward.  Scared again. Worried.  Disappointed.  Overwhelmed.  Not trusting."  You see, the last time I wrote anything was after Taylor's last surgery---way back at the end of June.   Boy were we hopeful!  Pain-free was not to be.   And let me just share with the whole world that I do not handle disappointment beautifully.  I would not make a good Buddhist at all---I am way too attached to outcome. 
      After the last surgery (anterior cervical discectomy), I had so many expectations and plans and had re-routed my life; all was going to be back on track.  BUT....that didn't happen.  Or hasn't happened.....yet.  This big miracle surgery did not do the trick...whatever the heck the trick might include.   This go-around we have even tried Oxycontin----that drug that people buy and sell and get highly addicted to.  It didn't help.  (Wanna buy some?  kidding!)
   I wonder if I am wired weird (probably),  because even though it's not rational at all....I blame myself for Taylor not getting better----feeling better----being back up to "par" (again, whatever that is.....oh, isn't all of life so darn relative???)  I have a real wrestling match with the belief that I have not done enough---that there is something more I SHOULD be doing.  And, I'll just get you right to the last chapter of thoughts like these.......They don't lead one to one's "highest self".   (Where do I come up with all of this kind of talk?)
     Anyway, it's been a tough four months.  Real tough.  Lots of crying.  And stress.  And attachment to outcome.  It makes me want to stay inside...in my pajamas...under the covers.    I didn't do that on the outside....but my insides were definitely living a solitary life.  (Oh, this is so depressing.....sorry)
      About three weeks ago, my sisters decided to come visit and do an intervention with me/on me. I think they realized that I needed to get off of center, look at some options and get my life back on track.  When I asked them what an intervention entailed, one of my sisters replied, "I think we're just going to get you really drunk."   Wow!  Now, that's medical psychology for you at its best.   I don't even drink, but at least I had a better idea of how the whole intervention weekend was going to work.  Whew!  What I came to see clearly was that two of my loving sisters just hated to see me suffer (unnecessarily!) and were going to throw me down and talk turkey to me.  In the south we sometimes call these, "Come to Jesus" meetings.    So, I guess that's what we had.  An intervention that involved neither alcohol nor Jesus.     (Well, maybe a little wine....and .....some prayer.)  But mostly, it was just boundless, abundant, deeply profound love ---among sisters. 
      I am not sure what the next months will bring.  My prayer ......my fervent prayer...is that both Taylor and I will both become healed---he from his physical pain and me from my LONGING and worrying and heartache...... that he be ok. 
I have to let go some.
I have to let go.
I don't know how to do this so well/very well/at all.
Letting go.....what does that look like?

     

     
     

Vaya Con Dios...Going With God

     As we headed out at 5:00 in the morning on June 26, to drive from Athens to Johns Hopkins Hospital in Baltimore, I listened to the last of my  unplayed phone messages.  The sweetest voice spoke to me. It sent shivers of hope up my spine and lit up all of the cells in my body:  "Vaya Con Dios," she said.   Those were her only words.  Words that implanted and imprinted themselves into my core.
I found myself using those words as a mantra for the next two weeks as we headed towards yet another spinal surgery for Taylor.  Go with God.  Vaya Con Dios.  Going.  Trusting.  Fearful. Tearful. Worried.  Hopeful.  Thankful.  So afraid.  But, Vaya-ing with Dios.
          I've come to realize (again) how much easier it is to be thankful when things are going well.   When we have all that we need and when we feel like our prayers are being answered.....gosh, those times of saying, "Thank you," just roll off of our tongues and out of our hearts.   It's when the big stuff that trips up our lives happens that makes us choke and emotionally sputter and stutter---and lose hope. 
Taylor's anterior cervical discectomy was a "success" according to the surgeon.  Poor fellow (the surgeon I mean).  He came out to give his report after four hours of surgery to find me in quite a state.  He was smiling, so I knew things must have gone well.  I hugged him and told him that I insisted on paying him for his services (my weird sense of humor).  Dr. Riley reported that Taylor's neck was now stable and that he should be experiencing less and less pain (Taylor I mean.)
I can sing the "Hallelujah Chorus" from start to finish.  I think I may have done that as my own sort of internal background music.   Thank you.  Thank you. Thank you.   Hallelujah.
  We are home.   Taylor is back in a neck brace for 3 months.  He is smiling.  The light has returned to his eyes.   His sense of humor is back.   There is hope....again.
Taylor went with God the whole journey. 
It is me....It is I....who keeps getting off track and falling  into the ditches along the way.
"Vaya con Dios," she blessed....and "benedicted" and said on that early morn.
And we did.
And we shall.
    

Living a Life of Thank You...not so much

Not doing so well with living a life of thank you lately.   My head is barely above water.

Taylor and I have been back and forth to Johns Hopkins for consultations (for him---not me.)

He is scheduled to have an anterior cervical discectomy C-3 through C-7 on Tuesday, June 28.  (This will be his 3rd major cervical surgery in 7 years.)

In whatever way you say sacred prayers, please pray, meditate, send loving thoughts to us for this whole procedure.   I will keep you updated on this blog.  Love to all.

And, thank you for checking in here. 

I feel your loving arms around us.  

Wholly week

Oh look!  The Retarded Mother has had another thought and decided she needed to share it with the blogosphere.  Is this conceited?  Yikes. I hate arrogant people who think everybody wants to read what they write.   Ooops.  There I go again.   Me and who I hate.  And so there you have it.  You're on the runway with me now.   You might as well stay. 

It is Holy Week.   Taylor and I began by having our own little Palm Sunday service on our carport.  I sang.  He held the oak branch.  Wholly Holy. I mean it.

This  wholly/holy week has sort of jostled me around too with some pretty profound juxtapositions that have left me both full of thought.... and tearful.   Curious circumstances have laid my life with Taylor slap up against the lives of some real live human beings at the top of their game.  This past week,  I have interacted with Fulbright Scholars,  Most-Likely-to Succeeds, Endowed- Chair- Named- For -Him person,  She publishes two books a year writer, and  close relatives who have won big awards.   There is a synchronicity here.  I am supposed to be noticing something.  A lesson is being offered. 



Even up there in that picture, it's impossible to say where God is not.



Am I brave enough to open my eyes and ponder it?  If I am willing, I  know that it will lead me towards wholeness and healing. (Thank you for letting me use words like this.  Are you barfing?)
      I have sat with  Taylor this week  as he was  hooked up to a Tens Unit.  Have you ever seen one of those?  It's to help relax the muscles in his neck.  (Over-share----sorry!)  But it sort of visually makes the two of us look even more awkward and alien.  No Fulbright Scholars sitting in this kitchen.  That's for darn sure.  Just a regular mama and  her son living this life--- consciously and lovingly---but a bit on the outer fringes of what People Magazine might have on its SUCCESS page. 
    I am both amazed and amused at how ironic and metaphorical and illusive and unfair and hard and magical and transcendent life is----all at the very same moment. 

What struck me way down to my core being during this holy week is how really it all---this life/these trappings/these outward decorations for which we all relentlessly yearn--how really it is our souls that matter.  Our souls and our hearts and our willingness to love----like really love-----gnarled hands, webbed feet, wounded sides, scarred skin, imperfect lives-----it's that willingness to see ourselves and the other person as worthy, as beings/people  to be heard and treasured. 

That's going to end up being the bottom line.   Go ahead.  Read to the end of your life's book.   I swear, you're going to find out that this is what it's about.

I admit it.....reluctantly.  I compare myself and my life to others.  They have this.  They earned that.  They were awarded this.  He has this degree.  She got honored for that.  Their children are perfect.  His house is bigger.  Her legs are thinner.   She can do math.  All of it.  And then where does that leave us/leave me?

I just don't want to hate my life or feel like it has not been enough.  While I nor Taylor have yet to  be awarded any of the Nobel prizes--- nor have I ever won the bathing suit competition in any pageant........my soul/Taylor's soul is alive and abundant and thriving and willing and available and nourished and resplendent. 

 Souls--- Alive. Abundant.

 Resplendent sounds pretty darn radiant, doesn't it?

Holy radiant.

Oh Lord, and we're only half way through this  Holy Week.

Wholly radiant.
That ain't so bad.