Glad for the light of morning

Before Enlightenment:  Chop wood; carry water.

After Enlightenment:     Chop wood; carry water.



This is such an intense time in my life and in the life of my family. 
Mostly I am so mindful of the kindness of friends and strangers. 
Kindness brings me crumbling to my knees.  It is like grace.

Sometimes the clarity of this life is blinding to me.

During other hours, I am without sight of any kind.  I fumble and fall.

And still there is wood to be chopped and water to be carried.

When I am not gripped with fear, I am mostly so grateful.

Life can be so tender. 

I want to always be mindful that we are sacred---all life is sacred.

And I need to do sit-ups.  And get some new eye liner. And feed the dog.

And sing.



Many Things are True at Once

It is a beautiful day.  That is true.
I am full of angst.  That is also true.
I am so thankful for so many things. 
Many things are true at once.

Songs of Wailing and Thanksgiving

Last night I heard from a doctor who knows Taylor and whom I really trust.  He does not like the idea of Taylor having a full fusion.   As he and I were talking (on a Friday evening; his office had long since closed, he had family he needed to be with and yet he was talking to me...), I was thrown into a sort of despair.  

WHAT ARE WE TO DO HERE???

  I woke up this morning wailing.  I mean it.  Crying out for help.

I could have written the book of Lamentations: 

It is called in the Hebrew canon 'Eikhah, meaning "How,"

 being the formula for the commencement of a song of wailing.

I felt lost, abandoned, without guidance.

That still, strong voice inside of me spoke, "Do not even put on your bra.  DO comb your hair. Go in your pajamas.  Maybe wear a thicker shirt.   But go to your neighbors, Jane and Jim.   There you will find what you seek."

So I did.  With my coffee cup, wearing Taylor's Crocs, and looking like a pitiful homeless woman, I crossed the yards to Jane and Jim's back door.  I could see them through their bay window, sitting at the table.  They were having their morning devotional.

In I walked..taking my puddle-of-a-self with me. 

Jane was reading from Psalms Now.

She read one Psalm after another out loud.

Cell-by-cell, pore-by-pore, tissue-by-tissue, muscle-by-muscle, every part of me began to relax.

We held hands and talked/prayed in ways that were meaningful to each of us---each having our own concerns and confusions. 

We laughed loudly a lot! 

I was irreverent and sacrilegious---profane and holy.

It was really neat. 

I sang a song of Thanksgiving.  That's pretty darn cool, let me tell you.

I have my bra on now.  

Uplifted in every way.  (Oh Lord....how corny can I get????)

Another day on this journey .....towards wholeness.  

So hard.  So interesting.  

So full of wailing AND thanksgiving.

Fear Whispers

Oh my goodness, I say out loud that I am committed to being honest on this blog.  In theory I think that I want to "embrace" my fears about.......well, about life, liberty and the pursuit of happiness---but specifically...about Taylor's sugery and how mammoth it is. 
But right now my thoughts are slip-sliding into fear---I am afraid.
My stomach knots up as I picture Taylor  in ICU.  Will I handle it? What does handling it look like anyway?
If I throw up from fear....literally....does that still count as handling it? How will I know I have done the right thing with all of this?
     Today Dr. Traynelis (Chicago/neurosurgeon) is making a phone call to Dr. Doerr in Athens.  They will talk "doctor talk".  In my mind I hear whispering and bad things---like things they would not want to tell a mother.   But...is this true?  And what does that mean?
    So here is what I am hoping for and praying for in my secret gut of guts:  I hope that the MRI indicates to Dr. Traynelis that Taylor's spine is secure enough so that he will not have to do a full fusion---all the way down Taylor's upper back.  That just sounds...and is...so brutal to a human body.   Will Taylor be able to withstand that much trauma to his precious little , 150 lb., frame?  Will he be scared?
I am hoping against hope (wow...what if I hoped WITH hope)...that this master complex spine surgeon will decide that it is enough just to fix what was done back in June.  I could so handle that.
So, it's out there.  My whole body is wearing this fear.  I want to face it---and say it out loud. 
Looks like I just did say it out loud. 
Letting light in to fizz out the fear.
Maybe that's what healing is.
In your own way---in a way that makes sense to you---please pray for healing---
Healing within.  Healing in the body.  Healing in spirit.  Healing of the aching heart.
UPDATE Since I POSTED THIS earlier today.   I sent this email to a few people:

I just talked with Dr. Traynelis’ office.   Dr. T reviewed Taylor’s MRI from Tuesday and is firm that Taylor needs a  full fusion from C-1 to T-1 with removal of the “instrumentation” that was put in at Johns Hopkins in June.

I feel sick.  That is a normal feeling, right?  I would be weird if I weren’t crying.

Dr. T. tried to call Dr. Chris Doerr yesterday but couldn’t get him---and is trying again this morning.   He will give Dr. Doerr all of the codes so that Dr. D. can call insurance on Wednesday---with me sitting in the office acting normal (as if).

    If none of this makes sense….it’s ok…I just needed to tell you.

Taylor is going to hate my guts.  I hated my parents when they made me get my cavities filled.  Is there a proxy parent I could hire here?

Thank you for reading, for loving me (assuming that you do) and for giving a rat’s ass.

( I just had to cuss!)  marianne

MRI....Step # 962 up this Mountain

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

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

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

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

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

 The foot holds are not clearly marked.

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

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

Uh-oh---there came the tears. 

How do I care for this man/child?

When will we figure this out?

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

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

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

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

Isn't life just so layered and complex?

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

Holding Pattern

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

Keeping Stuff In

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

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

Dear Diary



Taylor on the train to NYC at Christmas

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

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

Insert your own picture here.

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

Either Way I'm Celebrating

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

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

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

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

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

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

     

     
     

Vaya Con Dios...Going With God

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

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

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

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

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

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

And, thank you for checking in here. 

I feel your loving arms around us.  

Wholly week

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

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

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



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



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

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

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

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

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

 Souls--- Alive. Abundant.

 Resplendent sounds pretty darn radiant, doesn't it?

Holy radiant.

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

Wholly radiant.
That ain't so bad.

Asking for Help

I come from a family of hard workers/educated yeoman farmers/ heavy lifters.  Seriously, I was raised to take care of myself (and others), to not require or ask for much, and to handle whatever comes along---with a smile on my face and a song in my heart (and on my lips) no matter what was going on.  I am not a whiner.  I have a high threshold before I begin to complain. I can stand a lot. I can be brave.  These traits were implicitly rewarded  in my family.  Do your part.  Try not to have many needs.  Don't ask for help.
Translation:  You can do this.  You can get through it.  Just keep on going.  Plow on through.  Chin up.  Nose to the grindstone.   Are you getting the picture?
   I haven't written in a long time.  I have been in a dark place.  My role as God's wife has been tested. And, just as I figured and sort of knew all along, I never really was God's wife.   That was just something I had tried to squeeze my way into.   You see, for these past few months, I have worked harder than ever to "fix" Taylor's pain, to figure it out, to dig around and find one more answer.  What I did find out from a doctor at Johns Hopkins is that Taylor does have degenerative osteoarthritis of the cervical spine.  On a recent Friday afternoon, the orthopedic surgeon simply said, "Taylor is not going to ever get better.  You are into managing pain from here on out."  So, there it was.  Harsh. Truthful. Words not palatable but information that shifted our course.  So, for the past five years I had been on a barefoot trek across the medical Sahara thinking there would be a cure---a way towards healing and physical wholeness for Taylor's spine.   News flash mama:  No. That won't be happening.   Regroup.  Smile.  Sing.  Move heavy furniture all by yourself.  You can do this.   Really?  I don't think so.
      Last week I asked for help.  I hate to admit I need help. It feels a bit like failure.  Even knowing all of the things I can say to myself about how healthy it is to see a professional, I still drag my heels.  Let me try one more time to do this on my own.  But I knew I was going under and I was beginning to be afraid.  I do not know how to read this life map about how to raise a son in chronic pain.  Forget the retarded part.  That is a piece of cake.  No kidding.
 Retardation=piece of cake. 
Chronic pain=This is way too hard. 
    So I went to see a counselor.   And, I sat there and cried.  I told her I don't know how to be a  mother to Taylor.   I don't have answers.   Heck, I don't even know the questions.  But, I did something huge for myself:  I took care of myself.  I asked for help.  And I got help.  I was heard and acknowledged and comforted and assured I wasn't crazy.  (Well, I can't swear to that last thing.)  I shared my stories.  I guess I already told you I cried.  And then some more.
And, I'm going back.
For help.
It's ok to ask for help.
Is there a bumper sticker that says that yet and can I have one?
Anybody else want one/need one?

Shift Happens

 My mother, Mattie Lou, was not a woman who moved her body much.  You need to know that to get the full benefit of this story. 

The stage:  I was 14-15 and was being punished.  Mama had restricted me to sitting in a chair (precursor to time out) near the end of her bed (on which she lay.) She told me I had to sit there until I apologized for whatever it was I had done at the time.   Two hours into it, I must have said something smart alecky to her. With one fell swoop of a huge leaping movement, she was up off that bed, across the room and screaming, "WHO DO YOU THINK YOU ARE??? WHO DO YOU THINK YOU ARE?!!"   Startled?  Yes.  I had never seen my mother move like that.  It took me by surprise.  But little did she know that mostly her actions were giving me more "material" so that when I went back upstairs to my sisters I could imitate her.  And I did---that night (in the safety of our upstairs bedroom)  and for years to come among my siblings.    "Who Do You Think You Are?!!" (the full re-enactment of it) became a family favorite at talent shows and on beach trips.  Most of my siblings can go into that voice in two seconds when we think somebody has gone out of bounds and misbehaved---and needs a firm reprimand.

     Funny how those words ring in my head---in different contexts-- 40 years later.  On Friday I had picked up Taylor from the place where he goes in the mornings---formally known as the Hope Haven School for the Mentally Retarded.  He got into the car holding his head and almost chanting,  repeated, "I hurt so bad. I hurt so bad."  Lord, it's only noon.  We've got a long day ahead.  All of my morning prayers and meditations for inner peace got side-swiped and I forgot all of the "centering" thoughts I had had before I picked him up.   (Isn't it hard to watch people we love in pain? )  About 15 minutes into our drive home, I finally just pulled the car over on the side of the street  and sobbed.  "God!  Don't you see us here?  Don't you see this child?  WHO DO YOU THINK YOU ARE??  When are you going to fix him and make him not hurt?  Show me your face, God.  Let me know you are here!  WHO DO YOU THINK YOU ARE??" 

     I am not sharing this with you so that you will feel sorry for me.  I am sharing this because I know that every single one of us---in our own situations and in our own lives----has really hard things to deal with at times.  We---each of us  has obstacles and just some really tough situations that may make us feel  alone and helpless.  I don't have the market on this.  I just happen to be the one blubbering  about it today. 

Right?  Are you feelin me? You know it's true.  Own up.

      As Taylor and I sat there in the car on the side of  Lumpkin Street----me imploring God to help----Taylor a bit confused as to why I was so upset----Taylor just turned that sweet little innocent face right to me.  He looked directly into my eyes. Oh, there was such love there. Who knows why, but  what came up out of my mouth was,   "Very God of Very God....my hind foot!"  And then I started laughing.  I was laughing because I am such a fighter/a "show it to me then!" type person.   But in my depths---at that moment--- I knew at that we would be ok.  I was  not sure what form the "ok" was going to take but everything in me felt certain that God had an  answer to, "WHO DO YOU THINK YOU ARE????"

If miracles are really a shift in perception, then I would say a miracle occurred right there at noon on Friday. 

I had screamed at God the same words my own mother had screamed at me.  I think it made God laugh----which made me laugh-----which probably made Mattie Lou laugh in her Heavenly home.

My miracle "shift"  was and is knowing  that there are different and other ways to see the same hard situation.  

I sometimes forget that.  I get stuck.

Every day-----sometimes several times a day--- might require a shift in perception within us. 

Only if we want to see miracles.

Shift happens. 

Thank goodness. 



Shift Your Perception and The World Will Change




Handling this Life

      I just hate it when people say that God never gives us more than we can handle.  Most often, the people who tend to say that to me are usually all dressed up, driving a fine car, and headed to a fabulous restaurant with other high-functioning adults.   I mean, "What do they know about how much is too much?"  I heard a quote today that Mother Teresa had purportedly said.  "I know God won't give me anything I can't handle. I just wish he didn't trust me so much."  Oh, Lord, I've been busted by Mother Teresa of all people.  Damn!  But I love the second sentence of her quote ----I wish he didn't trust me so much.  Amen to that.... is what I'm thinking.  What on earth have I done to deserve this trust?  I am falling down on the job.  Doesn't he see?

       Non sequitur alert...I watch the news and really wonder how the people in Haiti handle their lives.  They have the same basic needs that you and I have, and yet hundreds of thousands of them are living under tarps on streets, with no running water, no electricity, no nothing.  I/We see those images and go right back to our iPods or online banking or to thawing the lamb chops for dinner.  I would be so curious to know the numbers of handicapped people living amongst them.  I really don't think I could do it.  I'm too spoiled. I'm too something. 
     Maybe it's because I'm 57 and in transition with my life goals; maybe it's because I'm re-evaluating what life is all about; maybe it's because I live in my own sort of sub-culture; maybe it's because I long for conversations and interactions to have meaning and purpose......maybe I just want too much. Heck yeah, I'm intense.   A friend, frustrated with my need for "depth" finally lost it with me yesterday.  "Why do you always think everything has to mean something or teach a lesson or have a moral?"  Exasperated was she----with me.  Lighten up was the message.  Oooooo, that is so hard for me. 
      I know that others of you reading this have a similar longing/craving to soak the life sponge of all of its meaning.  My little fellow, Taylor, is my constant reminder that we are here for bigger purposes than to settle for Dancing with the Stars, over-caring if our boobs sag (just a little), obsessing about if we've made enough, done enough,  been enough.  Are you following me?  Are you with me?
 I want to get this life right whatever that means. 
 Maybe I'm trying too hard. 
 I think I am trying too hard.
Where is Mother Teresa when I need her?   What made her not care about using lip gloss?
How do we get to that place?
Where's the balance?

Lip gloss......meet inner peace. 

Is that more than we can handle?

   

  

Departures. Arrivals.





Bring on the Wonder.
Bring on the Song.
HOPE



        Taylor and I just got back from our annual Christmas/
New Year's journey.  Airports bring out the best and worst in me. I love the adrenalin that starts pumping---traveling, going away, something different, off center, out-of-my comfort zone.  And pushed up right next to that excitement is an almost pathological longing to cling to what is safe and known and routine.  I am not spontaneous.  Damn.  What happened to those days?

   I have traveled through airports during some critical points in my life.  I have stood sobbing in long security lines after a painful breakup; I have pushed Taylor in wheelchairs in and out of handicapped access lines before and after surgeries in other states.  I have left sisters and parents and dear friends at gates with my heart up around my throat believing that my life would never be back on a normal track.  Inevitably after each......a change...in me.

   Always...always...I have seen those signs: "All Flights.  Departing Flights"

Follow these arrows.  Go that way.  Make those  choices.  Depart.  Fly Away.  Go down that ramp way.  Your life will be different---maybe drastically.  Maybe not at all.  But, there will always be a departure from this moment.

    It is a new year.  I like the sound of 2011.  It sounds hopeful to me.  Does it to you?  I am not into numerology, but there is a swing in those numbers.  A newness---a new sound, a buzz, a skip, a bounce.  Life.

    My New Year's Choice is to depart from things, thoughts, beliefs, behaviors that weigh me down, hold me back, make me mean, lead me to negative thinking, keep me living in a "small" world.   Departure from being closed off to love. It's time to let people in--time to float along with the current instead of beating against the tide.  Flying away to new things-----new ideas---new love---new hope. 

Arrivals.  All flights.  Isn't it a good thing to be open to new-ness...to new seeds...new beginnings....new birth?

Bring on the wonder.  Bring on the song.

Anybody want to join me in hope? 

How will we "do" hope this year? 

Make hope happen.  In real ways.

What will it look like in my life?

What will it look like in your life?

A noun and a verb: HOPE.

I'm open.  Are you in?

Birth Day (s)



The least of these--the greatest of these---all are Invited



      I am a big cry baby.  Seriously.  I get my feelings hurt easily. I sulk.  I might as well be in a closet curled up licking my wounds when I think somebody has left me out or hurt me.  I'm old (er).  I like to think I am processing stuff more better/faster/with more "consciousness" these days.   Stay put.  Just laying the ground work.
   Taylor was never invited to birthday parties when he was little.  He didn't have a core group as it were. Invitations were just not forthcoming.  So, whereas my other son, Cole, went to a birthday party a week, I really have to rack my brain to remember any  birthday parties to which Taylor was invited.  And,  I cried a lot. I felt left out---rejected.  Early on, I bought into the belief that he/we were not wanted....would not be included in real things.  (Have you ever noticed that when you believe something that you create situations in your life to support that belief? Pay attention. That's a whole different blog.  Hold that thought.)
     I guess then I was stunned, suprised, delighted when Taylor received a for-real, actual birthday invitation (you know, like from Halmark) in the mail.  Gisela was inviting Taylor to her daughter, Cindy's, 7th birthday. The invitation had his name on it.  It was the first birthday invitation he had ever received.  I cried. (Not in the closet---but at the kitchen sink.)  Hooray!! Somebody loves him/me/us!  Taylor, of course, has never doubted that he is loved; he does not have my issues--thank goodness.  On my way to the party, I got a speeding ticket.  I tried to explain to the officer that it was our first birthday party invitation----ever.  I paid $87.00 and sped off.  I remember everything about walking into that house on that Friday afternoon.  Gisela met us at the door---like real guests---like we were treasured.   There was a hat and gift bag with Taylor's name on it.  This sounds so darn sappy, but it makes me tear-up to even type this.  It was one of those days/events/situations that opened up my heart and shifted it off center to a better place.
    My daddy's birthday was (is?) Christmas Eve.   He is in Heaven probably trying to integrate it or get the angels to recycle their aluminum foil and picking up Coke bottles to turn in for cash.   And, then, of course, there's THE other birth day this week. Holy Week.   So, in my life, this is a week that somehow is both fragile and majestic and humble and lowly and promising and full of tender aches.  Enter the violins---can you hear the angels singing to you?
       In so many ways, I have been a great mother to Taylor.  But, if I could have a Do-Over, I think I would have saddled up my camel, my donkey, my Pilot---and busted in on lots more birthday parties.   When earlier folk saw that star in the east,  they just went.  They didn't ask, "Oh, have we been invited? Are we wanted? Are we on the list?"  Heck no!  They saw the light.  They followed it.  They went---ragged clothes, cold, speeding tickets and all. 
      Here's what I know  or want to know:  The Christmas Birthday party is a time for me, for you--for us----to look around and see who's not been invited in sharing what we have. Who needs an invitation? Who feels  disenfranchised and aches to be included?  Ask them in.  Greet them at the door.  Give them a hat with their name on it.
There's room at this birth-day party for all of us.
Happy Birthday, Jesus, Jack,  Taylor, Cindy, Gisela, Dorna, and on and on and on and on---all ye guarding your flock (s) by day and night--your flocks near or far.
Gather round.  Your invitation is here.

The hopes and fears of all the Years

How many poignant, here's-a-new-twist on Christmas, reason-for-the-season stories can we read  this year without throwing up our fruit cake? So, I won't even try.  Well maybe. 

All I know is that Christmas---growing up in my large family, was not that magical.  I wonder---really and truly wonder--what the formula is (logarithm?) for how many Christmases a person can go through with unreal expectations---that somehow sort of fizzle and plummet right before his/her eyes---and yet, still, the very next year---cement those same expectations into place? Is that the definition of eternal hope or something else?

     My father was a forestry professor.  We did the whole going out into the woods to chop down our own tree thing.   Of course we never went to a tree farm; we just clomped around in the woods off the side of a highway.   Invariably we ended up cutting down (chopping would indicate a thick trunk) two little trees which we would tie together with rope once we got home so it would look like one tree.  Keep in mind that my  father was  a tree expert. More was expected of him.  Mama always always cried.  The tree---the kickoff to the season--was already a disappointment:  two scraggly trees tied together with some twine brought up from the basement.   Christmas spiraled down when mama's big Christmas from our father was a huge, yellow, plastic trash can for the kitchen.  Daddy had lived through the depression, had fought in WWII and put himself through school.  He didn't need many "things."  He gave us (his eight children) purses we already had, old dolls with different dresses, toothpaste, shampoo, toilet paper, soap from Holiday Inns in which he had stayed.  What threw off the curve or perhaps kept the hope alive, was that every now and then they would throw in a clock radio or one bicycle for us all to share.  Yes, indeed, next year would be different---be better.  Maybe next year we'd get  the stuff we thought would make us happy.   Stuff.  So we hoped.

   When Taylor was born, my parents were old.  They had been on the road for hours when I called them to tell them that Taylor had been born.  Daddy said, "We'll be right there." And they drove four hours in the night to see us. Into my room walked these parents who seemed to have ruined Christmas for me, year-after-year---parents who reached out to take this sweet baby out of my arms--and into their own arms--to hold and keep and honor.  Daddy said, "You are so lucky, Marianne.  Not many people can have a baby like this."  

    I look at that picture of Taylor up there with Santa----Taylor who asked to go see Santa.  Taylor this "child" of 26.  This is not the Christmas card I had planned to send you guys when I was 13 while  unwrapping pajamas that were the wrong color and too small.  This is not the Christmas child I thought I would be raising when I was 14, sitting next to a Christmas tree (s) on its last leg. 

 But this is my child---my gift-----the baby I was given in the hospital manger.

And, oh, I look around me and man do I see wise men and women and Lord knows I hear the angels singing.  I heard her just today. And, yes, there are shepherds. You are probably one of them for me.

   I look at my not-so-perfect-Christmas -child picture -----and the hopes and fears of all the years come up and clog up around my throat.  What were my expectations?

What are my hopes?  What are my fears?

"What child is this?" I wonder.

How do we honor the gifts in our lives?

Whatever form they come in---these, our gifts---how do we honor them?

Only Kindness Makes Sense

    

Only Kindness Makes Sense
(Geneen Roth)

        I'll just jump right on in here and tell you that we've (I've, you've, me've) been going through a rough spot.  I know I do not have the market on rough spots, but since and because this is my blog, I get to talk about my rough spot. When I have a hard time, I tend to go inside---way inside----maybe even close to under--but mostly just inside.  I know that healing is an inside job.  It's been said that for all hard emotional work, that the only way out.....is through.  No short cuts.  Damn.
    So Taylor has been feeling bad again.  His 26 year old body has been cut on and scarred up pretty badly for a person his age.  Because I am a control freak---you've met me before: I'm God's wife----because even though intellectually I know I can not control his body and how it heals (or doesn't heal), I keep trying to fix him. 
I keep thinking that if I read one more article or if we see one more doctor or if I hear about one more magic medicine---then he will "poof" himself into a light-hearted, physically happy place.  But, it is not happening.  And it's frustrating. 
Join me here:  If you have someone you love dearly, don't you hate it when they hurt?  Your answer, without even emailing me your response is "Heck yeah!"
So, you get me, don't you?
     Within the past couple of days, I had an "Aha!" moment.  I was lead to some words and thoughts that my soul had been searching for---words I think I had a craving to be sunk way down into my own soul:  Only kindness makes sense.
Hold on now.  Here's the good part and I want you to read it with me and tell me what you think.  Only kindness  (even and especially) towards ourselves makes sense.  Towards ourselves----kindness for me....from me....to me.   And then, later on, in a few minutes after I've been kind to myself..... it can be moved out----outward.
    I have spent my entire life trying to change my body---change my thighs, change my this, change my that...beat up myself because my body wasn't thin enough, toned enough, tall enough....yadayada blah blah blah.  You know what? 
Does that sound kind-----sound loving?.......sound gentle?.....sound compassionate? Don't you even try to bolt out of this conversation, because I know that you---yes, most of you, my brilliant readers----you may not be holding yourself  either with tenderness and love and oh I love that word.....grace.  And kind-ness.  Are you?  Be honest?  Are you kind to you?
      I am battling (that means war, doesn't it? And war is not kind....see how smart I am!?) with my own body----and HELLO!!---with Taylor's body!!!   I have felt betrayed and angry and frustrated beyond measure with how his body holds him hostage (not by choice) and then how my body holds me hostage (Ooops! By choice!)  How many times can I say, "That's not fair!"  in one day and still be within the legal limit?
     So today, this epiphany happened inside of my heart.  Only kindness makes sense.  Kindness: accept, embrace, cuddle, kiss, adore, cherish, lavish with tenderness, slurp-up, prize, thank----all of the parts of our bodies---ourselves---just as they are.  OMG----huge.  Landslide huge.
I've got to do this for myself so I can do this for my son who counts on me so.
By "do this"  I mean be kind  turned inward.   
We....I/you/me/him/her/they----are so worth...so worthy of our own kindness.
Only kindness makes sense.
 Begin now.
I'll begin with me.
You begin with you.
This feels like a challenge.  Why is that?