Thank you for the donuts.

Taylor's precious older brother had to have a heart-to-heart/very difficult conversation with me last week.  He said,  "Mom, face it:  people like Taylor are marginalized.  You have got to accept this "
    I cried.  I do not want this to be true.   But if I am honest, I have to accept that what Cole was telling me is true---in the world in which I live.
Frankly, for years, I was one of the worst "marginalizers"  around.   I did not go out of my way to make folks who were different feel welcomed and included.   What's so weird is that I have always viewed myself as being so big-hearted and open-minded.  BUT....nope.  I was not an "includer" of those who were not like me.
I sat with my group, socialized with my group, and lived within my normal group boundaries.
      Now, I see it all  from the flip side. My group has changed.  I hang out with people who ride the "short bus".  (Don't laugh. You know what I'm talking about.) 

 I am  now on the outside looking in.
  Honestly, it  leaves me feeling vulnerable many days. It took being a mother to this marginalized miraculous gift- of- a-son to explode my heart----upsetting my deeply rooted beliefs about.....well....about everything.
    Who could not love this boy of mine?  I really do not get it. 
But, marginalized he is---for real.
I am thankful on both of my knees that I was not allowed  in this life to miss out on learning such profound lessons and truths---about what really matters.
Thank you, God, for the donuts.
And for all of us---whether we're outcasts or in-casts, thank you, as we learn.
And that's my prayer.

Music from the Heart

     My brother-in-law, Gary, sings opera, loves opera,  and knows opera.  Gary has often said that the tenor,  Mario Del Monaco  had the kind of voice that could awaken the soul and music in anyone who heard him.  Yesterday, Taylor heard Del Monaco sing.  Right here in our kitchen.  Aunt Martha worked the computer. As soon as brother Cole saw Taylor's response to the music, he began filming.  Taylor sang from his heart.   Unabashedly.  Openly.  Freely.  With gusto.
 His soul was talking/connecting/singing back to the tenor who had awakened  something inside of him.
      This is a rendering of a  raw, unfiltered music connection ----straight  to the heart/ears/soul of a precious human who has no preconceptions about what "good" music is.  Taylor just sang what he heard.  Would that we could all sing and dance----as if no one were watching.
      Sing on, Taylor.
      Sing on---each of us.
     

Arms and Miracles

Taylor is 31.  Thirty one.
I have had 31 (thirty one) years to do this life with him. I gave birth to Taylor when I was 31 (thirty one.)  So, I knew myself and had grown all sorts of beliefs and convictions on my own before this imperfectly perfect child was placed on my chest and on my heart.  Now I have spent 31 (thirty one) years undoing or re-doing or redefining or trying to make sense of  my life----and my life with Taylor. My life with words like retarded, inclusion, special needs, handicapped, mentally challenged, "suffers from", "debilitated by".....
  Don't you think 31  (thirty one!)  years should have given me plenty of time to figure this all out?
Spoiler alert:  No.  There has not been enough time yet to figure out this life. Even given the 31 years.  I am such a slooooooow learner evidently.
      Yesterday when Taylor was using his arms again in the pool---for the first time in maybe 8 (eight) years----I was struck dumb with the "miracle"---medical, divine, mysterious-- miracle of it all.   For years we have gone to this same pool to swim.  For the past ten years and though five massive spine surgeries,  I have spent most of the time in the water weeping as I have held Taylor's head so he could float on his back.  It was the only position in which he seemed to not be in pain.  I have prayed a million prayers and sobbed on a hundred Thursdays that my sweet son might feel better---might be able to do something in the water other than just float.   And look-a-here.
"Well, darn if it ain't a miracle right here and now on this ordinary Sunday." I heard myself mutter.
   Taylor used his arms.  Pain free.
      I might have missed this miracle because I was thinking about how fat I looked in my bathing suit----how I needed to color my hair---how I can't seem to make intelligent conversation about books or music anymore.(Could I ever?)  I might have missed this miracle because I was thinking I needed to go to Lowe's to get some carpet cleaner or  had lost myself in counting  all the calories I had eaten since lunch.  I might have missed this miracle because I get so caught up in the intoxicating myth that everybody else (you)  has it all figured out.  I let thoughts like that distract me and I fling myself far from my center-----don't barf now....but from that center that is the divine and "whole" place in each of us.  Yep, I can go way off course and lay myself out in my own self-made ditch.   Ditches sometimes feel safe.   I  find comfort there.  (Another myth)
But then I miss miracles.  Extra-ordinary miracles.
     Taylor used his arms.  He swam without pain.
Maybe this is all I have to know.
 Maybe it's all figured out.
Life is just waiting for me to notice.
Mysterious.  Miraculous. Divine.
Pay attention, all ye...and me.

An Easter Sermon

Driving  down Alps Road in Athens last week, Taylor reached over and took my hand. 

In his gentlest voice, he said to me, "Taylor perfect."

A thunder-clash of  emotions clutched my insides---and then found a soft resting place deep within. 

"Yes.  Taylor perfect," I vowed. 
 Taylor perfect. 
And so it is.
And always was. 

 

Whatever it takes, for as long as it takes.

     For years when Taylor and I have gone to visit my sister in NYC,  we forego Taylor wearing his J.C. Penney pajamas and opt for the T-shirt and sweats that are always tucked in the guestroom chifferobe.  Through four spinal surgeries in ten years, Taylor has sported this Tee on each of our many trips to Soho. My sister and I have always noted  the slogan, but laughed it off.  "Whatever it takes for as long as it takes."  Yeah. Yeah.  We nod and shrug and just sort of breathe in the fact of Taylor being Taylor---special needs and all. 

     Taylor is 29  years old.  The whatever it takes part of this t-shirt saying---in real life, some days gets worn and threadbare and all crumpled up.   Some evenings the for as long as it takes part seems endless.  I don't want to cut up his food or brush his teeth or sit and watch Bambi  again  on another Friday night.  

But then comes morning.  Thank God.  New light. New hope. New ways to see old beliefs.   Come morning, the Tee shirt comes off----but not so much the forever sentiment.  

      Sometimes a line from one of Mary Oliver's poems finds its resounding way into my head:  “Tell me, what is it that you plan to do with your one wild and precious life?"  
 And I pause.  And then panic.  I hear myself shouting, "But this is NOT enough!  Is this a precious life I am living?"  Let's face it, it is not a wild life at all.   Or is it? 

       Taylor's "imperfections" are so glaringly obvious (and oftentimes offensive) to the outside world.   So many of us are so constricted by our own compulsive need to be perfect that it becomes uncomfortable to see him without that needling reminder of our very own flaws/weaknesses/holes---or what we see as such.  It is just more comfortable to look away.  I am you.  I do this too. 

       We---most of us---have such a hard time loving the parts of ourselves that just don't measure up.   It is almost not-bearable to accept and then love those parts of ourselves that are IMperfect.   You know this is hard.  We give lots of lip service to, "Nobody's perfect," and yet we all spend our days moving Heaven and Earth trying to be.   Trying to be....needing to be...perfect.   You know it's true.   Be honest. 

       And so.....and so.....the wild and precious part of our lives---of my life-- must be to love this life----sinkholed, , scabby kneed, broken hearted,  non-liposuction-ed,  Bambi- watching life.  
Taylor's Tee shirt is a reminder for me---about my own life. 
Any life lived deeply and real is what we all crave.  Isn't that so? 

 I will continue to see  my journey with Taylor as deep and wild ----however long it takes me.
 Whatever it takes... my  lesson is to learn to  embrace and kiss the precious-ness of this life ---the life that has my name on it.  

   

Loss, Grieving, Wandering

Taylor lost his daddy six months ago.  I lost my best friend and Taylor's other parent.  Taylor stopped saying words on the day Joe died.  I still say words but they seem meaningless most of the time. My boy and I are wandering in the desert looking for what went missing.
   Today I knew that it was time to write again.  I heard myself say, "Just put something down.  Start.  Just begin."
So here I am ....back again. The old me but the new me.  The me that feels like a piece of corn that has had its husk stripped/ripped off.  Shucked corn---with silky fibers still stuck in the kernels---all messy.  I think some people say things like, "She's a hot mess. Do hot messes grieve and fall to their knees in the darkest part of the night?  How does loss carve such a deep trench in our hearts?
      I used to think I was a pretty good mom.  Now I am not so sure. My compass for leading Taylor is all whacked out.  The true north magnet is going hay-wire. Wavering off course.  And I feel guilty about it.  That's irrational---but yes, guilty.
      Where is the promise?  Remind me about  the promise? It is hard to be so vulnerable.  I liked having my mask--my husk.  It was safer that way.
Way down deep in my tiny little cells lives hope.  Who in the heck knows how hope got planted inside of me---but it did and IS.  I just need  hope's flame to stay lit.
I pray for a kind wind to breathe gently into the lungs of our hope.
 And for Taylor to find his words again.
 Wind and words.
  Those are my healing prayers.

Role Reversal.....or Is It?

Taylor's father has lung cancer.  Hopefully all of the slash and burn modern medicines are shrinking a very large tumor.   In the midst of this, Joe (Taylor's dad) has a hip that is giving him fits.  A year ago, we were living in angst just watching Taylor live with so much pain.  Now, as Taylor is healing, it is he, Taylor, who is caring for his dad.  Isn't it so interesting and amazing in life how ebb and flow keeps a constant cycle in motion in all of our lives?  Sometimes we get to be the person serving others.  Other days/hours/weeks, we are humbled into receiving the care and compassion of others.  To the naked, untrained eye, it might appear that Taylor has been on the "taking" end of things for most of his life.  But, when all of the silt settles----and when we are still and taking serious stock in what's what in our lives, it is clear that this sweet and innocent little guy has been giving to us all along.   I so often forget to see with new eyes.   The landscape is so amazing through a lens of pure love.

Making New....Making Room

Another Easter has come and gone.  I can't even tell you how happy I am that it is not this time last year.  One year ago, we were headed into a long spine surgery stay in Chicago.  Healing has been S-l-o-w, but incrementally moving forward.   I think we thought it would be a zip-zam-boom sort of straight-up recovery, but the reality did not match those expectations.  And so, we wait. And watch. And hope. 
     Taylor's daddy, Joe, was diagnosed with lung cancer two months ago.  This has up-ended our lives.  Even though Joe and I are divorced, we are close friends.  He has moved in with us.  If you take me out for drinks ( I don't drink...but I NEED to!), I will fill you in on details that I am saving for Oprah's new show on OWN.   Joe is stable at this point---chemo, radiation and LOTS of rest.
     So, this Easter has been a time during which I have looked at renewal and rebirth--- just thinking about shedding old thoughts, patterns, beliefs and old feelings to make room for new---more better ones.  I believe that we each have to enter into our own personal resurrections on a daily--sometimes hourly basis if we are going to be the people we were meant to be.  This is HARD work.  And constant work.  And, it is a process---not an event ( Like in, "Oh yeah, I already did that once.")  Well....do it again---forgive, enjoy, confess, enter in, make amends, be honest, take care, show love, show up, be accountable, be intimate----yeah, do those more than once.  Renew.  Re-born.
      This photo:  Taylor and I were riding to Wendy's on Easter around noon. (No "real" Easter lunch for us.)  I turned on the radio to hear the end of a worship service at a local church.  The moment Taylor heard the music, he folded his hands and said, "Pray." 
Taylor gets it.
Music is prayer.
Life is prayer.
We are our own prayers. 
Our lives are our prayers.
Taylor reminds me.

Here, my prayer. Hear my prayer.

I was working in my study today when in walked Taylor.   He manuervered himself about until he had fitted himself onto the prayer kneeler.  I just had to take a picture; it is so sweet.
Would you----if you will---share with me what you think Taylor might be saying?

 

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.