A Tribute to our family Hero!

One year ago at Christmas, our household was pretty sad.   Taylor was in constant pain.  It looked like we were at the end of hope.  It was a dark time.
    Months earlier,  I had been given the name of a world-class neurosurgeon at Rush University Hospital:  Dr. Vincent Traynelis.  I actually had his photo and contact information on my desktop for months before my desperation  over-took me and prompted my call to his Chicago practice. 
The incredible Haley M. answered my call-----in more ways than one.  I sobbed on the telephone with her while she waited patiently for me to overwhelm her with information about Taylor and his long medical history.   Oh what an angel she has turned out to be for our family!  Within a few days, Dr. Vincent Traynelis called me at home---way after a long day of surgery for him---and he talked, questioned and listened for more than an hour.  So ....our journey to Chicago and Rush Medical Center...and to Dr. Traynelis began.  It was a long, circuitous, emotionally-ladened journey, but as you all know, Taylor had his full fusion in May.  We were in Chicago for 48 days.  It was a time of ups and downs, intense fright and of tremendously deep joy.
       Dr. Vincent Traynelis is our hero this Christmas.   As Taylor heals more and more, as he participates in his regular activities---as he is returning to the Taylor he used to be....We give thanks to Dr. Traynelis. 
        Thank you, Haley, for hearing the pleas of a mama.   Thank you, Dr. Traynelis for being so gifted, skilled, brilliant...and kind.  
         Merry Christmas from Taylor!  We love you!

 

Miracle Knees

For all of the years that I taught middle school, my "kids" always made fun of my bountiful knees!  Undoubtedly when I wore skirts that showed my knees,  one of them would call out, "Ms. Causey!  You gots THREE sets of knees!" I always bristled at these words because, well....."don't no woman want three sets of knees!"
I have always seen this part of myself as something wrong or flawed or bad. 
(I inherited them from my mother.  Thanks, Mattie May!)
But....Today when Taylor went and found his scooter after a year of ignoring it completely..I was overcome with awe and joy and complete and utter thanksgiving!
I fell on my knees (which is risky because then I have to get back up.)
I quickly whipped out my phone, took a little video and texted it to my sisters. 
Within a few minutes, I received such a perfect reply: "I hope your knees get all calloused from all of the miracles that you going to see!"
Because I am true believe that ALL things come to us as gifts and in the service of healing, it occurred to me that it IS a great thing that I DO have three sets of knees.
I am going to need them.
 Miracle Knees---Bring on the callouses!

Unconditional Love?

Taylor's older brother, Cole, stopped by the house early this morning to collect something from his old room. Taylor stood like a sentinel at the bottom of the stairs calling up to him, "My brudder.  My brudder.  Hey my brudder! My brudder, hey!"  He must have called for his only---and his beloved--brother at least a dozen times before his voice was strong enough for Cole's reply to make its way downstairs.   "Good morning,  my brudder," Cole chimed---probably for the 200th time time this week that he had been summoned (with love) by Taylor.
    I heard it all from the bathroom sink.  It was so sweet. But for the first time this morning, it dawned on me---like really woke me up kind of dawning---that Cole has a person in his life who loves him unconditionally.  See, I have be aware for many years that I have had this very unusual kind of unconditional acceptance/regard/love from Taylor.  It had just never occurred to me that Cole also shares this rare blessing.
   If you are reading this (and I guess you are if you're reading this), you must already know how completely remarkable it is for another person to have this sort of "I love you for who you are---Because you are---no matter what you do or think or believe.  I just love you".  It is...well, it's what all of those self-help books are written about---but that very few  of us can achieve:  loving another person unconditionally.   Pretty dam(n) rare!

 No matter how much Cole (or I) might beat up on himself  for his perceived imperfections, Taylor's view of him is, “Nothing you become will disappoint me; I have no preconception that I'd like to see you be or do."  Whew.   It's just that plain. It's just that simple.   It's just that profound.
   I have to say that it is pretty disarming to witness  such a pure love  by someone who never tries to influence his brother; he does not set out to limit Cole's potential, nor does Taylor manipulate in order to persuade or change his only brother.  There is  none of that usual family business that often goes, "I love you. You're perfect. Now Change!"
    I guess that is why this morning, I went bounding after Cole shouting, "OMG! You have somebody who loves you unconditionally!  Do you know how lucky you are???"
    Lessons are being taught in my house and not by me. 
    Love is not something we must earn (I am learning).
Love is something we both give and  if we're lucky... that we are able to receive.
Taylor is doing his best to show us that love is infinite, boundless and sometimes.....unconditional.
I am a slow learner.
But, either way, Taylor's brudder is loved.
 Completely.
And I  get to see it as it happens.
Win/Win for sure.

One little profound thought

How We Travel

What keeps coming up in my mind---sort of like a mantra but more like a persistent thought of some kind is this:  It is the journey and not the destination that matters.   How we travel in this world--how we make our way---how we go---defines us, frees us, restricts us---can clog us up or gives us wings.   I am so "destination" fixated, that I really do so often forget that the "trip" begins....what?.......When we get in the car? When we've got our shoes on?  Once the airline ticket is booked?  After the first 100 miles? The day we were born?

I have had so many intense longings and dreams and wishes and hopes that my sweet Taylor was going to just jump right back on his bike after these several years of avoiding it.  For SO long, his bike was the way he traveled in this world.  People knew him (and still know him) by his bike sailing up and down Milledge Avenue---orange flag just a-wavin'.   He was set free on that bike.

For now...for how long now??? Taylor has a new way of going.  That means that I , too, have a new way of going---of moving---of traveling through these days. 

I am doing my best to "lean into it" and let it be.  Change is not a bad thing.  He's on a journey.  I'm on my own journey.  Two paths.  Two ways (at least two) of finding our way.

The destination is not clear exactly.  What I'm seeing, though, is a road map that leads to a more expansive heart and hopefully to a place of kindness ----with success being redefined.

And,  so we walk or ride electric scooters or hobble---our soles walking on kindness' soil.

My shoes are buckled.  My feet are moving forward. 

We're well into the midst of the journey.

 

It Is What It Is

Honestly I am not really sure how I'm doing these days.  The best thing I can come up with is that I am having post traumatic stress something or other.   I know it has been three months since surgery, but I am still not connected to my body. It's weird. I think I'm just going to go with it for a while until I meet myself coming in from the outside.
    So... we were at Coney Island last week as part of our visit to New York.  My sweet sister thought Taylor might enjoy some of the rides.  We walked along the boardwalk, he rode four rides and boom...we had "done" Coney Island. Bam.

Taylor is 28.  Taylor is 28 years old.  I have been his mama for 28 years now.  You'd think I'd be getting used to things. Sometimes I am gripped with emotion from out of nowhere.   I gulp.
   Watching my precious son walk up to entrance to "The Flying Whales" just about did me in.  It was early Sunday morning;  he was the only rider on this ride.  Taylor was taller than the "You Must be THIS tall to ride this ride."  But the nice ticket-taker man let him on anyway. 
Taylor's face was one of pure delight.  He was thrilled.  No scream machine could have evoked the same look of "I've Got This!" than those flying whales.  He ruled that ride.  And for about 7 seconds I cried---deep, riveting, internal sobs.  "IS THIS MY LIFE???"  
Yep, sure is. 
He was SO happy. 
What else is there really?

     
   

What Brenda Said

We're home.  We were in Chicago at Rush Hospital for 48 nights.  I know that's how many nights because I counted.  Taylor is healing.  Slowly.  Very slowly.  I watch every single little bitty nuance of a sign that his body makes to see if he is really getting better.  And then I hold my breath and say all kinds of  "Please" prayers. Basically, in very crasse non-medical-ese, the neurosurgeon built a cage around Taylor's spine.  I can't even stand to look at the x-rays yet.  It is all too much. 
    But anyway, during a welcome home dinner the other night, my friend Brenda said, "You know, Marianne, you just have to let God be God."   Yes, that sentence: Let God be God.  Thank goodness that none of us can see inside each other's minds/bodies or my friends would have witnessed a tighening, a clutching, a white-knuckling of, "Why that's impossible..... he can't do anything without MY help." 
    You see, my DNA was rewired when I was very very young.  I became a care-taker--not by choice.  My brain chemistry was forged; I somewhere got the message that nothing happens in my my life---or close-by life without me helping out God---and all of the spirits of the holy universe.  I just don't know how to let it BE.  So, Brenda was suggesting something that, for me, is huge---and hard---nearly impossible.  But I listened.  And was still. And yearned.
     Metaphorically, I live my life leaving sticky notes for God all over the place. "Ah-hem, while you were sleeping, you may have missed...,"  or, "I am not sure if you're aware of this but..." 
Holy Cow!  As my mother used to shout at me, "WHO DO YOU THINK YOU ARE??"    Yes, I guess I am  really giving myself a whole bunch of power, right?   Oh lordy me.
      And so this week, I got a message from Taylor----actually he had been giving it to me for a long long time, but I finally noticed it. And for me, it goes right along with what Brenda said---at least, for me, they go hand-in-hand.   When Taylor wants my attention, he does not say, "Listen."  No, Taylor says to me,  "Mama, Wake up."   I can  be driving or eating a sandwich or washing dishes and if he wants me to know something or be aware of something , he says, "Wake up!" 
    This really has intrigued me this week.  Wow! My very own sticky note---from whom?
And are there other sticky notes just for me out there if I just pay attention.....I mean if I just "Wake up"?  I thought I was the only one leaving messages/signs/notes/prayers/pleadings in this life. 
Wow oh wow.   
Let God be God.
There are sticky notes all around---signs---that have been posted.
And, they have gifts and messages for our lives.
Wake up.
I think I will.

40 Days, 40 Nights

Just so you know, this is not the blog I was going to write.  I have a "really good one" in my head, but I can't manage to get it written.
This is just an update for those who do not follow Facebook.
We have now been in Chicago Rush Medical Center for 40 days.  Actually, Taylor is in the rehab section of the hospital at this point. 
After having a full posterior and anterior spinal fusion, healing has been slow.  Taylor has gone from being on a vent for 14 days, then to a trach and all the while on a feeding tube (NG tube---goes through his nose, down his throat, into his stomach.)  
   The really really good news is that the trach is out..  Now we are waiting and working with him on swallowing.  The photo is of Father Stephen, a Chicago priest, who was sent to the hospital room to do a blessing/healing for Taylor's throat.  Two of my friends in Athens who are Catholic (and who know ALL of the patron saints) contacted him and asked him to come.  It was a sweet blessing---as all blessings are.
      So......we wait and hope and cajole.  So much of how this is going to work is based totally on Taylor's body doing its own work.  There are no pills, no exercises, no magic medicine to make the swelling in this throat go down so he can swallow.  It's one of those things over which we have no control---and you can imagine how that puts me in a tail-spin.
       Those are the facts.  I hate that darn NG tube but on the other hand, I am grateful that he has gotten nourishment.  This little guy has been an amazing trooper.  And let the record state that I will NOT be finding any more neurosurgeons for him---ever.  This is it.  If this surgery does not make his pain better, then well, we'll just......we'll just ....handle it.
       I don't know when we will be going home to Athens.  We left there on May 13.  I have forgotten what my kitchen looks like---but not how it makes me feel. 
        So many lessons.  So many stories.  So much learning.  So much growing..  So much grace.  So much mercy.  So much gratitude and deep thanksgiving. 

Being Here Now

Whew.  Crack the whip.  Remember that game?  I feel like we've been on the outside of the running line and have been flung off; we are sailing in the air out there somewhere.  What planet are we on?

     Taylor is in a regular room at Rush Hospital.  I actually cried when we left ICU late last night because the nurses were all hugging us goodbye.   Oddly enough, it had begun to feel like home.   We had heard one another's stories about sisters and vacations and parents in role-reversals.  It was probably time to leave.  Right?
       Mr. Tay-man still has oxygen feeding into his trach.  His has a feeding tube (which actually just came out accidentally).  Darn it all.......another procedure to put that dang thing back in.  Oh, how we wish he could swallow and have his food/drink go down the right way---and not go into his lungs.   I am surprised that Joe and I are still speaking.  Divorced though we already are, we  still function like friends----as we should.   But this situation taps into every stress button imaginable.  Is it human nature to need somebody else to blame?  I love that bumper sticker that reads, "I am NOT  saying it's your fault; I am just saying I blame you."   That pretty much sums up a lot of how I am feeling.  Ok, saying it out loud and "owning it" is the first giant step towards changing it.  (I could probably use a good weekend retreat along about now----maybe Outward Bound or something that would involve tight-rope walking across a huge gorge---you know...."to build character". )
         So, here is how I am handling the stress today:  I am going to go to State Street in Chicago, find a Nordstrom's and buy some new Mac lipstick.  Is that called lipstick therapy or just denial therapy?  Either way, it's about $20.00 worth of good self-care.  AND!  I have found a hair salon in Lincoln Park from one of the ICU nurses.  So, Monday, I am going to have my hair cut.   Let me just say that this feels mighty frivolous given the gravity of what is really going on in this room, but I MUST balance this out somehow.   You get me, don't you? 
       That's it from the 12th floor of Rush Hospital.  I am typing and Taylor is watching Homeward Bound for the 100th time.  I am mother of son who had a trach in his neck so he can breathe.  
Where is that lipstick I think I so desperately need???

Guest Blogger

Oh lordy me.  Where am I???  I don't even know what day it is.  I  know we're in Chicago because I can see the Sears Tower.  We're definitely in ICU because, well.....just look at the picture.
Eleven days here.  I never thought we would STILL be in ICU.  Imagine that.
     Yesterday I was so upset because Taylor's nurse told me that every time I went into the room that Taylor's blood pressure went up.   It is true.   When he saw my face, he would fiercely try to talk through his trach and tell on the nurses for the shots and the blood-drawings and the caths and the restraints.  He SO wanted me to help him; he became agitated and desperate.  It was awful to watch.  I felt completely helpless and defeated.
  But, because I was the one face that stirred him up, the nurse  asked that I not go into his room for most of the day.  I fell apart.  What???  Who would take care of him if not me?? 
     Remember in those old-timey movies when a woman gets hysterical and somebody slaps her---in an effort to "bring her to her senses"?  (I think in the year 2012 they might even call this b***ch slapping if I know my common street vernacular.)  WELL,  my sister basically did this to me.  And then she said, "You should blog about how this makes you feel." 
My immediate response, "NO!  Martha,  YOU need to be my guest blogger.  I am too upset!  They have fired me from being his mother.  I have never been fired before from anything, so if you think I should talk about this, then you will have to do it."
   That was yesterday and this is now today.  
What I am learning:   I knew that Taylor would be going through drastic changes this week.   I had not prepared myself for my own need to grow, expand and learn---about myself---not about him. 
Wow, this balancing act of being a mama, a woman, a professional person, a sister, a friend---someone who has got a life of her own ---all of it---straight up learning curve these days. 
     I'm glad they kicked me out of the room.  I'm thankful that  my sister forced me to unclinch my white care-giving knuckles.   I have a lot of healing to do myself.   Anybody want to get in that line with me?

Left turns and Rugged Roads

I never ever in my whole life thought I would be praying for my son to have a tracheotomy.  But today, that was exactly my prayer.  Sweet Taylor has been on the vent for eight days now.  The tube in his trachea is keeping him swollen and very agitated.   If, by any chance, you have just found your way to this story of Taylor, he had a full anterior and posterior fusion one week ago-----seems like a lifetime ago.   I know we've been here at Rush Medical Center for a year now---ok, maybe just a week of years.

We were told this morning that he would be given a trach today at 2:30. As much as we had dreaded ever hearing those words, it was evident that a trach would be an improvement over what we have now. 
At the very last minute, a critical emergency came up for another patient and Taylor was put on hold.  I fell apart.  I am a big baby.  I forget that sometimes---but I am.  I just start crying and calling people names.   I say bad words.  It takes me a while to process disappointment.  Thank goodness there were no 12--packs of Reese's peanut butter cups hidden under pillows or pocket books.  I would have swallowed them whole.  As it was, I just cried. 
    In this past week I have learned what Propopol is.  I have seen a Picc line inserted.  I have learned to read monitors and know what oxygenation numbers mean----all the while being able to gaze out of the hospital window  at The Sears Tower.   Two worlds slammed up against each other that seem to not know one another even living side-by-side.
     This has been a rough and rugged road.  We have had to make left turns when we wanted to keep going straight.  I have lied/lay/lain on the intensive care "bed" asking myself how on earth we got to this place with our son.  And then........AND THEN.....there are glimmers of light that come bursting through---and I remember.   Darkness and light----light and darkness.
I am terrible with Bible verses, but somewhere in my head, I hear these words from the Psalms that I memorized years ago.  I think I will sing them to myself tonight:
"Even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you."
And tomorrow will be better.  I know it.

Sister Act: The Reality Show

Martha and Deanie have been constant givers of care

This might be a mushy (mushy-er) post. I know I can get pretty maudlin and navel-gazing, but those of you who know me, get this.  My sisters,  Deanie and Martha have been in Chicago with me this week.  This next sentence is a hackneyed sentiment ; I don't know what I would have done without them here.  (See?  Powerful sentiment, flimsy sentence.)
     I have fallen into both of their arms in a massive puddle of tears as the doctor(s) have found "no breath leaking through the tube."  I mean, really, HOW does a mama hear something like that and still stand up?
They have listened non-stop to my detailed accounting of what each nurse or resident said and how I tried to read between the lines (always filling the space in with some worse case scenario self talk.)   Even at dinner, as I sat paralyzed with exhaustion and fear, they humored me and told me that I had 52 more seconds to complain about the way the chicken was cooked.  (Who else can talk this straight with you?)
     And, most importantly, even though I do not have a picture of Deanie holding Taylor's hand,  both she and Martha  have stood by Taylor's bed for long stretches soothing and loving on my very own son.
And they have brought me tea and Vita-muffins and toothpaste and fingernail files.   And they have continued to listen intensely and carefully alongside me  to the words of every resident--hoping to squeak out hidden messages of hope and healing.
     To my sisters, Martha and Deanie, I love you.  I love you.

Deanie was thankfully able to take a few hours each day to see Chicago.

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