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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?