Tuesday, February 28, 2012

MRI....Step # 962 up this Mountain

video

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.





Thursday, February 23, 2012

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.

Saturday, February 18, 2012

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.

Friday, February 17, 2012

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