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.