Press Pass: Use it!

One of my favorite days in Taylor's whole life was a day about five years ago on UGA's Homecoming.  We live very close to sorority row in this university town.  Back then,  before he started all of his spine junk, Taylor rode his three-wheel (retirement  home bike?) up and down the main DAWG thoroughfare for hours on end.   Attached to his bike was always his wagon---and usually our poor, unwilling dog. On that  particular, brilliant Saturday, Taylor packed up his bike with a mission  I could see it in him.  He loaded up his bike, but this time he didn't have the  ubiquitous leaf blower--- that morning he loaded  his drum set.  Taylor has heard his own musical siren; the Pi Phi's were having a pre-game party and there was a live (lively and loud!) band rocking out a block from our home.  This mama- turned -detective,  crouched behind bushes and ducked in and out of drive ways as I followed Taylor to whatever it was that had possessed him.  And there I saw the band--on the lawn of the Pi Phi house.   Lo and behold, that little fellow, by golly, just took his drum set and did his own set-up right across the street from the band.  And he played along.  After every number, he moved his little drum set up a bit closer...and then closer, until finally he just crossed the street and joined the band.  Yep, he just moved right on in with them as if he were a core member.  During all of this, I was laughing and crying and making phone calls while hiding all the while.  I mean, you got to let a man have his privacy when he's making his debut with a big band.  Taylor did not need his mama  cramping his style.  No sir ree.  Taylor was there to rock.  He saw something he liked. Something in Taylor had come alive---and he went with it---went for it!  Without hesitation, he made himself a part of it.  And, it worked. It worked for Taylor and it worked for the gathered crowd.  (Stay tuned.)

  I love it when I see people use what I call  their  "press pass mentality."  It's that spark, that excitement--when our longing is louder than our fear.  We see an event/situation  and just show up--and get in.  But we  show up with full confidence that no only do we have a right to be there, but that the show could not possibly go on without us   It's like, "Here's the event and I'm going in and I'm sitting on the front row and then I'm going backstage----because that's what I want to do."  So bam!  Actually it reminds me a whole bunch of my fake Lhasa Apso dog.  Murphy just assumes everybody on the planet is here to see him and up he goes in their laps---lick lick lick---hugs and kisses.  "Ain't this great?  Aren't you lucky to know me?" mentality.   How do people (or dogs) get to be like that?  Is that a DNA wiring thing or is it learned?  I don't know. It does not come naturally for me.    And, sadly I let my own fear keep me from so much.  (So, I will attend my own lecture here).   But....and here's my big fat question for you:  What makes us come alive so that we just absolutely must throw ourselves into life around us?  What has to happen to engage us---fully, wholly,  intensely?  How come we don't just keep our press passes hanging around our necks--out front for all to see?
There's a beautiful quote by a theologian named Howard Thurman.  This press-pass mentality scholar challenges us with this:  "Don't ask yourself what the world needs. Ask yourself what makes you come alive and then go do that. Because what the world needs is people who have come alive."
Is it just me or do you think lots of us live outside of our own lives sometimes?  We talk about people not being comfortable in their own skin....in their own bodies.  I'm just asking...what are we afraid of? 
Is it fear of failure? Rejection? What?  Not fitting in?  Why are we not all using our press passes? 
So, here's what happened to the rest of the world on the afternoon Taylor came alive---after  Taylor joined the band at the sorority house that Saturday in October.  Before Taylor  became the Down Syndrome Ringo Star of the band, the real invited guests were just politely sitting and eating lunch.  Sitting around.....engaged maybe a little.  BUT!  The minute Taylor hit the sticks, everybody got up  and  started dancing! Daughters and their mamas; daddies and their wives;  daughters with their sisters. 
Because when one person comes alive, it is hard for the rest of us to just stay.....seated.
Being alive-----is contagious.
It's what the world needs. 
Come alive. Go do what you gotta do.
Hear the music. 
Load up your wagon. 
Beat your drum.
 Or better yet....dance!

World Missions

I knew early on that  I didn't want to be a missionary.  Well, actually, that's not true.  But I made my final decision once I started needing a hair dryer to blow dry my hair.  It occurred to me that I might  get sent/called to some country in Africa that didn't have electricity and I wouldn't be able to blow dry my hair.  That was about the time I gave up on the mission field. It's not even that I have great hair--or even good hair.  I just seem to need to blow it dry every day.  And  for that, I couldn't risk being a missionary.   Oh, come on now.  I know that there are others of you out there reading this that have your deal breaker list too.  I'm just brave enough/foolish enough (?) to come clean with my (short) list of what kept me out of missionary work.  Only really and truly....that's not true because I believe that all work is part of a mission.  No matter what we do...what we are doing...we are on a mission of some kind or another. I read somewhere yesterday that some of us lead life while others of us allow life to just drag us around.   Some of us have very definite callings while still  others of us just sort of plod along  and go in and out of open (and shut) doors.

Work with me here.....mission work.....life with a purpose.  Right this minute...don't even think about it...say out loud what your purpose is on this planet---even if it's just your purpose for the next fifteen minutes, what are you heading towards?
I have always been awful at writing down goals.  Heck, I have never even been able to make out a menu for tomorrow night's meal.  That would require way too much forward planning for me.  And, yet,  like so many of us, I live so much of my life in the future.  "After I lose those 15 pounds; when I complete that degree; as soon as my son graduates...." With me still?   But what is both startling and scary is that no matter what we tell others about our lives, we are acting out---acting on---acting upon---what we deep down believe our core mission to be.  Oh, I can just hear some of you right this minute arguing back with me, "That is simply not true.  My mission /purpose is one thing, but how I live my life is another."  Really?   I don't believe you.   Don't we get it?  Every word that comes our of our mouths, every action/non action we take on this very day uncovers.....displays what we really believe about how we should be living this life.    Scary right?  Makes me want to go inside and hide so you won't see me.  Yikes.
  When I went to pick up Taylor yesterday at "The Hope Haven School for the Mentally Retarded" (former name), there was a young extremely disabled woman in a stand up walker.  Drooling, head-cocked, non-verbal, diapered....(you get it) --her caregiver was saying , "Kia, make good choices.  Kia,  make good choices." 
I was struck dumb.  What in the heck did she mean, "Make good choices?"  What on earth kinds of choices did Kia have available to her?  It seemed like this life had pretty much stripped her of most of her choices. 
Back in my car with Taylor, it just washed over me how every single minute most of us have a multitude of choices just staring right back at us.  Eat this/not that.  Say this/not that.  Call her/not him. Read this/not that.
Volunteer here/or not.  Be kind/or not.  Over and over and over again all day, we get to decide little things and then much bigger things.....stuff...issues.  Whoa.  What a privilege.  And, in every single one of our decisions, choices, actions, we are claiming what we believe.  We are on a mission---our own mission for this very real and personal life.  Our mission field is right in front of us every minute.  It's not in Africa (necessarily); it's not overseas (necessarily). It is right here, right now. 
In fact, you are now in the mission field whether you like it or not.

Make good choices.

Kia would be honored to have your range of choices today.

This is your mission field--wherever you are--whatever you do.

You get to define it, mold it, make it---decide.

And, you still get to blow-dry your hair. 

No more excuses.  Darn.

Parallel Play

Help me with this. Sometimes...well, often actually, I convince myself of something that may not be true. It's only true for me. So, before I even drag you along in this conversation, my pre-reading question is, "Is this true or is it just me?" So, today I was back in line at the drive-thru at McDonald's. Here was the scene: I was on my cell phone and was listening to the radio. McDonald's now stations a real-live attendant (person) just before the "Order Here" Intercom. Anyway, the outdoor waitress (sans roller skates), had on headphones and communicated with another employee also with headphones. So, my question is, was there any real, one-on-one conversation taking place at all here? You might be thinking, "Marianne, get out of those drive thru lines." But, that's not it---totally. Oh, no. Read on.

     I was at a nice restaurant last night. A family of four sat next to me. Both kids were on their hand-held whatchamacallits. Mom was texting. Dad was checking his email on his iPhone. They were paying about $100.00 to sit at the same table for a family outing---and not talk. Everybody was ostensibly there for the same reason, but nobody was interacting with the person next to them.

So, here's where I drag you in...It's like we're all sitting side-by-side, but to cross over into another person's emotional air space is almost rare. Is this just me? Do you experience this or am I just not adapting quickly enough to ......ersatz?
I know that when we fly, the flight attendants always do that instructive song and dance that none of us pays any attention to. But, what I do take away from it is, "Put your own oxygen mask on first and then assist your child." The gist there, of course, is if you can't breathe, it is hard to help the person on your left--even if you love them. But, in real life, after we have all of the oxygen we need, what if the person on our left needs something besides oxygen from us? What if what they really need is our ear, our attention, our looking them in their eyes when they talk? What if that person to our left---that loved one--that child, that friend, that spouse, that sister---doesn't need the oxygen mask but would really come alive if we "hung up" and paid attention to them---hands free? Phone free? Gadget free?
I imagine this is how my own parents may have felt when they experienced the world changing at lightning speed right before their eyes. Basically, I just got rid of my rotary dial phone. I barely know how to text. Even though I consider myself relatively techno-savvy, I am already behind the curve. I was about to say I am lost, but I caught myself. Because, who, or better yet, what is being lost in all of this distracting we're doing? We are...or are we (?) all involved in massive parallel play? Refresher 101: Parallel play: Doing an activity right next to another person but not interacting with them. It's what toddlers do at an early stage of development. Play...but with no connection, no interaction, no cooperation. Side-by-side, but not with.. So we stand next to each other in line, sit across the table from one another, walk down the street together----but all the while....parallel.  And, as we learned in the 3rd grade, parallel lines never intersect. Is that what we want....to never intersect?  To not connect?
Lord knows that we all need time to process, download and regroup. I stay inside my own head so much when I'm with Taylor, that it's sometimes like being alone. But the gift that Taylor gives to me is that he forces me not to live a life parallel to his. Taylor literally takes me by the face and makes me see him. He forces me into his personal space by wrapping my arms around him, by putting his nose up against mine. Nothing parallel about that, huh?
My own guts tells me that we've moved  beyond cell phone etiquette into a way of non-communicating that will eventually cut us off from our own oxygen--spiritual, emotional, social.  What do you think? Are we regressing away from cooperation and "real" play---and moving back a step to not much real stuff at all---living parallel--not seeing the real human beings standing right before our very eyes---next to us, beside us,  across from us.  Is it way too early in the morning to be reading stuff like this?
You've seen that bumper sticker that reads: Hang Up and Drive.
What about: Hang up and Listen? And touch? And See?

What Ruins It For Me

Oh Lord, as if I don't have enough religious confusion already. This has been quite a week. Warning: I am a seeker of spiritual stuff---I almost said, of spiritual sh**, but, if you don't know me, you would think that is oxymoronic. For me, it's not. Maybe off-color, but not out-of-the-spiritual park for me. So anyway, I was visiting a group of people I have known for quite a long time. One woman, I'll call Cynthia, has been in quite a downward funk for many months. She's decided that she basically does not like people at all and hates her nursing job. But, here's the kicker: She announced that she has been called to the ministry. Get out of nursing...but go into the ministry. (Big question: What is the zip code for a place called "The Ministry"? I mean, how wide is this world?)
Oh, great. Just perfect. One more person to mess us all up. Loves Jesus---hates his people. I mean, how can anybody say all of that junque about their lives with one straight face? My son, Cole, has reminded me many a time about what Gandhi said, "I like your Christ, I do not like your Christians. Your Christians are so unlike your Christ." Squirm. Shift feet. Look down.
I have had several readers call me or email me this week about how much I talk about God in my blogs. It is off-putting to some, not understandable to others, and has no meaning or place to grab-hold-to for still others. But their questions and responses have made me think. That's a good thing for me. And, I really appreciate open dialogue. And here is where it leads me and leaves me.
Religion has divided my family. There is a separation among us. That breaks my heart. In fact, religion has divided many a family, many a country and much of our world. Talk about something being oxymoronic. God is love.... but I really hate you for not believing. Well, I don't exactly hate you, but you can't come to my house or sit at my table and my very own children will not go to school with yours because we will have our own...ahem....religious school. How many walls can be built in that last paragraph alone? Way too many. Far too many. Walls, exclusions, separations, judgements, we're in and you're out. We're right. You're wrong. We have everlasting everything, but you burn....yikes...good luck with that.
Is that the way it's supposed to be? Tell me.
God is love. God is grace---a gift. God is that which transcends all levels of intellectual thought. I know that I will catch much he** for this posting today. It's ok. I am seeking, sojourning, searching, open, willing, wanting, longing.
But, whatever God separates us from one another----no thank you. Not even close. That will not do for me. It just doesn't fit. The very people who espouse loving their Lord, are so often the ones with the longest list of people on this earth who will not fit in---are not allowed to belong.
My son, Taylor, my precious, little pure, non-agenda-ed man-child, keeps me about two feet above the worldly fray all the time. Almost nothing in his world sets down and clamps smoothly and snugly into the traps and trappings of what the rest of you guys get to do/have to do. So, what is often left for me, is to look inward---to look to what I have come to call God. I know that word sends shivers down some of your spines and slams down the connecting draw-bridge for others. And part of where so much confusion comes in for me (does it for you?) is when we see things like that sign that reads, "Don't make me come down there." Down where? Well, heck, where were you just a minute ago, God? Down? Up? Under? What about---always within? Always with? Beside? Between? On top of? In the midst of? Surrounded by? Within and without?
Do we live our outward life in semantics too? I mean, can we argue with how our outward/daily/real lives are interpreted--and what they mean? (That was a big 'ole mouthful of a question.) The evidence of how we live our outward lives---how we treat not only ourselves but how we treat one another, isn't that right up there with the biggest, most important, like numero uno commandent: Love one another?
Well, here's my big, fat spiritual question for the day: How do so many of us get so far off base? Me too. I get so far off base that I can't even find home base.
But, here's what I know...and believe me, my upbringing did its best to strangle it out me.....God ain't coming down here.
We don't have to make him.
God is here.
Touch your hands.
Now touch your heart.
Welcome Home.

Taxed

I couldn't help it. Today is tax day. This is a short one.
Taxed:
1. Being on the telephone (after the put-you-on-hold music--which, of course, I now have memorized and can harmonize with)--being on the phone with Quandricka with Medicaid.(You know, 1-888-punch #1 if you want this message in espanol, etc.) She asked me if Taylor's condition was congenial?
Well, yes and no. Congenial in some ways.
Congenital? Shouldn't she know the definition before she asks the question? Is that right up there with never ask a question you don't want to know the answer to?
Anyway....service denied. Not congenial or congenital?
Does contagious count? Is being Down Syndrome contagious? Maybe that's in the "It's Insurable" column.
Taxing...to me.
2. Yesterday Taylor's support coordinator, who obviously still does not "get" him, told me that I needed to write down a goal and a dream for Taylor. (Paper work to be eligible for Medicaid money.) I asked, "For example?"
She said, "Maybe his dream is to write a story book or a cookbook."
Choke. And, this is why I am going to burn in the fires of wherever---
I replied, "Taylor can't write or read....or really even talk. But I write a Blog. Does that count?"
She didn't know about blogging. Anyway, I knew it wouldn't count.
My sisters offered these as possible dreams for Taylor:
1. Go to Hooters once a week. Up close and personal may be a good dream.
2. Actually free...Willy. (Free used as a verb and not as a proper noun as Taylor insists on doing.)
Those are good dreams. Anybody? Anybody? Bueller?
3. I don't love this time of year in some ways. All of Taylor's paperwork has to be redone and resubmitted for insurance and support help. It's like starting over every single year. Taxing. And I was told yesterday, "You can't write down the same goals as last year. They have to be new ones." Oh.

"But," I cried, "He hasn't mastered the ones from last year---or from the past 15 years. Shouldn't we keep those goals?" (Using 3 words in one sentence, preparing his own snack, tying his shoes.) Taxing.
But I haven't met my goals either. So glad I don't have to be accountable for reaching my goals. Whew. Taxing.
I do not mean for this post to be a downer. Thank goodness I have a great sense of humor. And in laughing out loud this morning, I remembered of a funny story. Taylor's former teacher (incredible still!!), Mary Sgarlato, allowed me to take Taylor and his little friend Herbert to the bathroom while we were on a field trip in Atlanta. The boys were about 9 and we had ridden a bus over to Phillips Arena to see the circus. (I=room parent) I, room parent, allowed the boys to go into that huge men's restroom alone. They didn't come out. They didn't come out. Ooops.
I, room parent, announced at the entrance to the men's restroom at The Phillips' Arena: "I'm coming in! Woman on the hall!"
Good thing I did: There sat Taylor and Herbert up in the urinals---stuck.
Just sitting there talking like two little friends. Taxing---only to me.
Today I am thankful for this life.
I am thankful for food, a place to sleep, for friends.
I am thankful that my taxes provide Taylor with congenial, congenital and contagious Medicaid.
I am thankful that I can love and be loved.
We're all taxed in one way or another.
But, mostly, we need to be thankful.
For real.

Seriously, Ya'll Still Calling Names?

Behind the microwave in my kitchen are all sorts of diet books. Name a diet---any diet and I have that book. Because you see, for years, I always applauded myself for taking step one of weight control. And we all know that step one of any diet is to go out and buy the book. Step One. Yeah. Step One. But then I'd reshelve the book--behind the microwave. I don't think that was exactly step two, but that was my amended step two. And, then to actually follow the diet, well, that must have been about step 15 because I almost never got that far down the line. I like to read about stuff more than I like to actually do stuff----I mean hard stuff---anything that requires my getting out of my comfort zone and digging deep. Give me the book about it, let me watch the video, isn't there an infomercial for that by now....Just let me do the workshop on it. But, please don't make me plunge in and get soaking wet with the reality of it all.

Several weeks ago five women, loosely connected, ended up having coffee together. We have known each other on various levels all of our lives but have criss-crossed the country and gone our own ways. One of the women, Jayne, is what you might call a blue-blood. Her family tree links back to one of those Mayflower-type ships, and has maintained its wealth and status for generations. Anyway, she has found herself at this point in her life as a newcomer and the only "liberal" in a small southern town in a neighboring state. I guess my face gave away my reaction when she defined herself as a liberal. Yes,I was surprised. But Jayne quickly clarified the definition by saying, "Oh, yes, I'm a liberal, but I'm not a communist like you, Marianne."

What? How far down was that floor I fell on? I know what a communist is. At least I think I do. And anyway, I've been afraid of communists since I was in fourth grade. We were taught that the communists were the absolute worst people ever when I was growing up. I never wanted somebody like Nikita Khrushchev to come to my town and hurt my mama and daddy. Seriously, I had nightmares about the communists. And, here Jayne was calling me one.
"What exactly do you mean by that, Jayne?" were the words that somehow found their way up from the kick-in- my- gut and out of my mouth.
"Well, you just want everybody to have the same. You want everybody to have what you have. Life doesn't work like that, Marianne. You're a liberal communist."
She meant it in a nice way. Sort of like somebody giving you cholera in a nice way.
Maybe Jayne was right. Maybe I do want everybody to have the same. But the same what? I am going to tell you right this minute that I am pretty generous---but only to a point. Like you, I want people to have the same but not if it's going to take away from me and what's mine. (Are you agreeing with me or judging me--or both?) Oh Lord, this is a hard one for me. Where does need stop and greed begin?
How much of my Merrill Lynch (or is it Bank of America?) stock do I really have to share? I really would rather not answer that question. But from the way my stomach has tightened, I can tell you that I'm probably not a died-in-the-wool communist. I don't want anybody living in my upstairs like in Dr. Zhivago. Honestly, I really don't like to share much at all if it costs me much. Do you? (For real now.)
But! But, maybe this is what Jayne was referring to. If Taylor gets Medicaid, all handicapped people should receive Medicaid. I have great insurance. All of our U.S. citizens should have access to insurance. Everybody should have enough to eat. Everybody should have a bed to sleep in. Seriously, do we still think only we who are entitled should have all the goods? Is there not enough to go around?
Gosh, come to think of it, Jayne could have called me so many things. She went for the easy one. It's like calling somebody a racist today. When we're all out of arguments, we always go to that place. It's the last stop on the argument bus line.
But, seriously, do we really believe poor people want to be poor?
It's complicated, isn't' it? I've taught school for 52 thousand years, and all I can come up with is that education may be the answer. But, even that is complex and a boon-doggle. I guess that's one reason I am not a cabinet member--I don't have any perfect answers.
Here's what this here communist liberal retarded mother does know: We're in this boat together. You can move to the back or you can move to the side. You can put up a screen around your little boat area. You can hoard life preservers and eat all the fish by yourself. But it's one boat. And we're all in it--together. What happens in steerage and in the boiler room will eventually make its way up to the whatever deck we're on.
Bottom line: I like to think I care. And about caring: I really and truly would rather do the real thing than attend the workshop. Workshops are for beginners, novices, people just learning the trade. But those of us like you and me....we should be pretty good at this caring thing by now.
Communist? Whatever.
Caring? Gosh, I sure hope so.
Choose door #1.
The donuts are better.
The prizes are real.

Come Out Wherever You Are.

It's a family story; it's a funny story. It's probably a family urban legend conglomeration at this point, but this is how I remember it. My sister, Deanie, at age 17, was dating a boy named Sam. But she had allowed another male suitor onto our porch for a friendly flirt and chat. When Sam arrived to collect Deanie for their date, my caught-in-the-act sister, ran into the house and hid in a closet. Two things are important here: None of the doors in our house had locks. And, my little brothers were never ones to cover for their older sisters. Sam, mystified by the front porch competitor suitor, marched into the house in hot pursuit of my sister, and his potentially two-timing girlfriend.
"Oh, she's not here!" I covered. "She's gone out."
Sam, perplexed, was not buying it. Boys will be boys they say. And sure enough, my younger brothers announced, "Oh yes she is!! She's hiding in the closet right over there!"
Seizing his cue, Sam began pulling on the closet door. The door pulled back. Sam yanked. The closet door slammed shut again. Clearly there was a very real force resisting the opening of the door----with all of her might. One final yank and out jumped Deanie---into an arabesque, as if she had finally located the very item she had barricaded herself in the closet to retrieve.
"Ta-Da! Here I am!"
Making up stuff as she went along, Deanie, unconvincingly tried,"I was just in there trying to find the scarf I got last Christmas!" That was her story and by G_d, she was sticking to it!
But, as we say in 2010---busted. Deanie was busted, found out, outed. The jig was up. That's where Deanie found herself that day---hiding in a closet trying to juggle the parts of herself that were conflicted. (Of course, none of us used those words on that day. We called her names, made fun of her and harassed her mercilessly.) And then we tried to kill our little brothers. The skanks.
Sometimes, maybe too often-- we find ourselves at a place in our lives where we don't want to be---or know how to be. How did I get here, exactly? This is not where I thought I would be ten years ago---or even last week. But here I am. I know we've all had those kinds of experiences in which we wish there had been a closet close by in which we could lose ourselves. Just cover ourselves with quilts and blankets and stay closed up until whatever personal storm we were having died down or passed on by. And, it can be so aggravating too, when people around us keep yanking at the door and forcing us to come out of hiding. "Just leave me alone. I want to be here in the dark----with just myself--away from what's going on out there." It's sort of like we kidnap our very own selves and end up holding ourselves hostage. Hmmm. How does that serve us? (Always a good question to ask.)Do you know what I mean? I know you do. Even if the closet is not a real wooden cave, we all have times when we just long to climb inside that cave and wait. Wait 'til the "bad" stuff is over.
I'm older now. I have cellulite. My arms are flabby, so that means I know a lot about life. It is harder for us to hide from ourselves than it is to come out with the truth. Hiding is so alluring, but it is a fake, flimsy and temporary fix. Gosh, it is so darn hard to say some stuff. Especially junk that grips us around the neck and tends to suffocate us right in our own paths. I am thinking about secrets we keep or junk about our lives that we don't dare share with even close friends perhaps. Saying the truth out loud about some things can feel terrifying. But the minute we say "it," then we own it and it no longer owns us.
I have been afraid at times of my own feelings about Taylor and my life with him. In fact, there have been a number of feelings and things apart from Taylor that have "held me hostage" with my unspoken, unconscious consent.
I have gone into an emotional closet many times and dared anybody to pull on that door knob. "Nobody would understand," is what I told myself. People pulled. I resisted. Pull. Resist. Yank. Yank----and finally, thankfully...an arabesque.
Slowly I have learned to share my real feelings about myself---out loud.
There is such freedom there. And amazingly there is a community of people....like you.
Like my sister Deanie said, when she finally popped out of that closet,
Ta-Da! Here I am!
And, so I ask you, "Where are you?"
Are you saying, "Ta-Da! Here I am! This is me!
This is who I am!"?
And let me just remind you right now of what Joseph Campbell said, "The privilege of a lifetime is being who you are."
Can't beat that with a stick, can you?

Trading for Gold

In Geneen Roth's newest incredible book, Women, Food and God, Roth says, "We want to be thin because thinness is the purported currency of happiness and peace and contentment." Thinness is one pretty damn powerful currency in which so many of us trade. In that same paragraph in that same book, Roth adds, "Spiritual hunger can never be solved on the physical level." Stop. Back up. I know we're all real busy today, but that last sentence may just be pretty darn important. Are we looking for our souls or trading them in for junk?

Today I went by the bank to get some cash. Without thinking, I threw the $100 bill over to Taylor and said, "Hold this for a minute while I find my purse." Taylor dropped it in his Sprite. It was only paper--soaked paper. (Oh, what that could buy me.) Hear the word currency and you think money, don't you? Ok, leap with me....what about the currency on which we really and truly base our lives? Isn't currency really just what matters to people..to us? It's the reward we're looking for and in which we trade. (Boy, I got deep here fast, didn't I?) Some "currencies" that jump right out are, of course, money--and then we have currency like our looks, our time, our intellect, our bodies, our approval, our things/possessions, our degrees/our education. Look at what we treasure. Pay attention to how we treat what we value...and there we'll each find our own labeled, signature currency. What is yours? Is anybody still with me? Hang on...please.

My guess is---is if you're anything like me, you may have spent a good part of the last 24 hours looking to something outside of yourself---to "fix" something like well...maybe your heart..or your soul---whatever feels lacking/empty. Maybe you thought a new house, a new dress, a new deck would fill up that empty space inside. Did it? I can always tell when I have a longing that I am not willing to name; I go shopping or I get something to eat. Both are temporary stop-gap measures. Ok. Ok. Do not say, "Oh, I hate it when Marianne talks like this...blah blah blah." Just hang a minute.
Today when I was driving to (what forever was called Hope Haven School for the Mentally Retarded) to pick up Taylor, it just struck me how often during my day, I have to shift currencies. When I am consumed in Taylor's world, what matters---what gets me "stuff" is being patient, being a good listener, doing the same task over and over again with joy. Buying brand names? Taylor has no interest. Your Salary? Whatever! You've published? Who cares? What you weigh? Not an issue. Who you know? We're all the same. Physical beauty? Taylor only sees beauty. CEO? Chief of Neurosurgery? Taylor wants to know if you have a dog.
Taylor's currency is different from the currency that enslaves me in the other half of my life. But, what is the exchange rate between his world and the rest of the world? Who uses what? What has more value? See, like just today, did any of you worry about how much money you make? Think about who you needed to impress just today for an interview, a date, to climb that social ladder. Admit it!) Spend money on a designer anything? And....what did it cost you? Maybe not in terms of dollars and cents, but today, what did your actions cost you? Did any part of your soul get chipped away?
Sometimes in my dazed currency confusion, my head spins. It seems like I need to ask the world, "Do you accept Deutsche Marks here? Or, tell me exactly what you accept here--that'll get me what I need." I have to quickly scan to see what currency the situation calls for: Authenticity? Pedigree driven? Competition? And then.... What does that cost? (Seriously--no bull-sh**ing.) I am so accustomed to Taylor's way of trading---up-front, no pretense, what you see is what you get, no schmoozing, no lying, no hidden agendas. That's how he works. That's what he has to barter with. But, what is the exchange rate for all that genuine stuff in our very real, knots-in-our-stomachs world? Is his barter worth anything?
I really like Taylor's currency.
$100 bill in his Sprite. Oops.
But please let's hold hands.
Please look right into my eyes.
Please let's stop, get out, and ride the scooter on this very grassy spot.
Please just sing with me.
And, Taylor does not give a rat's a** about the calorie count of six french fries.
Should all of that be traded in for gold?

God Sees Your Underpants Anyway

I may be getting ready to ruin The Lord's Prayer for you--forever. Sorry. When I was in the fifth grade at Barrow Elementary School, circa 1962, we stood and said The Lord's Prayer every morning. We said that, and sang the National Anthem and then pledged the flag. Like clockwork. No questions asked. Public school. Lord's Prayer. Back then, we didn't have too many "international" students. But there was a girl in Ms. Osborne's class that year---I'll call her Adelheid Jobse--who just really never caught on to that prayer time. Every single day, when we were asked to bow our heads and pray, Adelheid, assuming that all of her classmates had our eyes tightly closed---well, she pulled up her skirt and fixed her blouse underneath. Every day, Lord's Prayer, Adelheid pulled up her skirt and adjusted the blouse to be tucked in again. By the time we had gotten to, "For thine is the kingdom," the skirt was back in place---but we had all seen her white cotton underpants--again. All year. Lord's Prayer...Pavlov's Dog....pull up skirt...make adjustments.....show underpants.
I guess that Ms. Osborne must have really and truly had her eyes closed all year during the prayer because she never gave Adelheid the heads-up or "This is how we do it here in America," girl-to-girl talk. Adelheid's father was finishing up his doctorate in physics, so thank goodness they returned home and Adelheid did not have to carry "the girl who pulled up her skirt during the Lord's Prayer" all through school. Except from across the Atlantic. Because I remember. And, my guess is that my whole fifth grade class remembers. That was the beginning of prayer in schools for me from a young age. (As a side question, I wonder what Alan, Dina and Gary, my Jewish friends in my fifth grade class, thought about The Lord's Prayer as part of the homeroom ritual. It never came up. I would like to know though. Readers? Reactions?)

So, by the time I got my teaching degree many years later, I found myself back at Barrow Elementary as a fifth grade teacher. Only by then is was 1990 and prayer in school had become unconstitutional. Well, you and I both know that just because something is unconstitutional, that doesn't stop people from doing it. Right?
By 1990, Barrow had indeed become the international elementary school in our county. In the class I taught that year, I had students from China, Israel, Japan, Korea, Pakistan, Peru, Colombia, India, and Albania. Throw those kids in with regular 'ole Athens kids and you've got quite a mix. Separation of church and state was in full swing....except that we forgot to tell the kids. Ooops. One day during recess, Katie Goodrum found a dead bird. Quick as a flash, all 24 students crowded around and went into pet-funeral mode. It was Matt Aldridge who called out, "Circle up everybody! Join hands. Let's say a prayer for this little bird."
Some of my students were not hesitant exactly, but perhaps a bit puzzled. So many cultures were coming into conflict----and into resolution at that exact same moment. Matt, picking up on the "religious confusion," gave the encompassing command, "Listen up, ya'll! Everybody---just pray to your own favorite God! That should about cover it! So just pray!" And they did. Here were my precious little fifth graders from all around the globe, joined by hands and in heart, to pray. To pray for a the life of a little creature that had passed on. Some of the children said stuff out loud. Most were quiet and just very reverent---in that circle, in that communal spirit, on that playground.

You know what? Nothing can keep us from prayer. Prayer is when we stop and acknowledge that we are part of a greater whole. Like Matt so clearly knew, prayer is a time that connects us one-to-one with our sacred little selves. Because isn't prayer when we allow ourselves to reach inside and touch something real--and then say, "Thank you." or "Forgive me." or "It's me again."? Maybe Adelheid was right all along. Prayer is a time for us to adjust and re-adjust what is going on in our hearts. Maybe to tuck in and un-tuck things in our lives that have kept us stuck. And going way out on a limb here---to show God our underpants--the parts of ourselves that we don't want other people to know about----the most intimate parts of our lives. 'Cause my best guess is that God can see them anyway.
Ok, You can open your eyes now because I've got a final prayer.
Here's what I know from Taylor:
A clean heart is a free heart.
That about covers it.
Go out and live in this life with your free heart--
And clean underpants (Optional).

Quid Pro Quo

I am getting ready to blast my own self right out of the water here. I think I was pretty old when I think I finally understood the term "Quid Pro Quo." I loved it when people used that term; I always nodded my head like I knew what they meant. But I didn't. This morning I realized I still don't know what it means. Or rather, how I've been using it in my own life with Taylor. Let me just say that I hate it when any public speaker begins by giving us a definition of a word out of a dictionary. Something goes off inside of me and I say, "Oh Lord, this is going to be so boring. He has had to resort to giving us a definition right off the bat. Why couldn't he (the speaker) just say what they know to be true?" (Anybody else feel like this?) But, too bad; here it is: QUID PRO QUO
Lat. 'what for what' or 'something for something.' The concept of getting something of value in return for giving something of value. For a contract to be binding, it usually must involve the exchange of something of value.
Is that what we call an operational definition? One from which all of us (just us chickens gathered round here this morning) will use? Yep, I believe it is.

For you see, for all of these years, I have prided myself on how much I give to Taylor. I just give and give and have secretly awarded myself "Mother of the Year" plaques and trophies for all that I have done. I give him something of value....food, clothing, training, a home, constant care, love, scooters, movies---yes I give him all of that. And until just this minute (man am I dense!!) I have created a story around all of my giving that makes me look like a big she-roe/heroine or something. I think for all of these years I have been making sacrifices and rearranging my life and doing without, so that I could fully raise this unique son of mine. And, here's the kicker: I have told myself that there is not quid pro quo going on/taking place. I give. He accepts. I give if I want to. He accepts graciously. It's one sided. My valuable life---off course, off center, rearranged, off the track, derailed----to take part in the life of this handicapped man child who doesn't even thank me. Whoa. Slow down. Regroup. Rethink. Re-visit this whole quid pro quo thing. Something of value for something of value. Hmmmm. Makes my stomach ache. Where have I been?
Because you see, I have tricked myself into believing that what we give needs to be external---things, career, money, prestige, importance, recognition, success. So, I have given Taylor things ---feel free to re-read the entire list above of all that I've given. But what of value has he given to me? How does this turn into quid pro quo? What for what? The definition--the one right out of the legal dictionary says very plainly that for my contract with Taylor to be binding, there must be an exchange of something of value. Well, obviously I have fulfilled my part of the contract. Right? But what about him? What---of value--has he offered?
Let's see: Unconditional love. Complete and open acceptance of me and of others. A kind and generous heart never withheld no matter what. Pure joy.Consistent and unrelenting approval. Delight in my whistling and how I look in short shorts.
Willingness to sing and dance in public. Total ease of people who look different.
Waking up every day with a clean slate--for me, for you.
Quid pro quo. I have a contract with my son. I am his mother. I am his friend. The contract is binding it appears. We have both given things of value. Seal this deal.
However, I think I need to work on my "things."
I have heard it said that the best things in life are not things after all.
I think Taylor knew about this all along. He cut straight to the chase.
He was doing the whole "quid pro quo" thing---giving something of value--way before I even caught on to the definition.
I guess he was waiting for me to figure out what has value.
Do you know?

Every Day is a Holy Day

Three pregnancies; Two live births. Every time I write that down on a medical form, my body tightens. This grief still has a space all its own. I have never shown anybody the picture at the top of this page. Nobody has ever seen it---not my sisters, not my sons, not my close friends. Joanna was our third baby. Today is the day we celebrate/remember the longing in our hearts for a baby girl. This is a very hard conversation to have, but in many ways I know I must. I must because I know that loss is part of all of our lives. Suffering cuts us off at the knees and slams us to the floor. But, we get up. Hope finds its way back into our lives. It's true. I live it.
Cole was about to be five. Taylor was about to be three when Joanna was born and died. There were problems with the pregnancy. Lots of bleeding, but the doctors were hopeful. An amniocentesis was done. The baby would be a girl. The baby would be "normal." No extra chromosome in every cell of her body. A new chance for the hurt in my heart. A little sister for the brothers. But it was not meant to be. Joanna never took a breath---even a little bitty breath. No breath. It was too early for her little lungs, for her tiny body. She was delivered without knowing life. Beyond sad is mostly what there was/is to say about that day---about that time.
Here's where the angels began to show up in my life. Angels that I clearly knew were sent from some other realm. Heaven-sent probably. Amidst this birth--and then death, there were so much radiant light. On bed rest for six months, I, the mama, was rendered pretty much helpless. Doris showed up for weeks and taught Taylor how to walk. She showed up time and again to shave my legs in the hospital. (That's a higher calling than even feet-washing if you ask any woman.) My family and friends cooked, cleaned and kept vigil with me and for me as we hoped to keep Joanna alive. Nurses lay down on my bed with me breaking hospital protocol. Dorothy's love never waned--and has not to this day. Other friends, Anne and Madge, called me at 3:00 am when my deepest fears wreaked their worst havoc. I watched doctors cry, other mothers collapse, and I witnessed Joe lose a part of himself that has never been reclaimed.
April 6 seems like such an ordinary day on any calendar. To my family, to our extended family, it is a holy day. All days are holy days. Cole and Taylor did not get to have this precious sister in their lives. The what-ifs have consumed us on countless dark nights.
I sing to Joanna. I talk to her. In many ways, I know her.
She is the bound-less spirit that tethers all love together. You have a Joanna in your life. Maybe your Joanna was your mother or your son, or your sister, or your friend. The death of these beloved people in our lives carve out pieces of our hearts that remain tender to the touch for as long as we live.
Your April 6 may be November 30 or January 28 or July 19.
We each have a day that, in just hearing the date called, our bodies and hearts stand in silence.
Every day is a holy day.
Today is ours.
One of our holy days.
Every day is a Holy Day.

Get Up!

Oh, what the heck. I am just going to write what is needling its way to the front of my brain. I have tried like the dickens to smoosh it down, but it keeps easing its way up--and in. It's Easter. I could say so much---like all of us. I am going to take another route around. For people who know me a little bit, you think I am always funny---never serious. For those who know me well, you know that I am serious--almost to a fault. Want to see a person in earnest? Look for a person in jest. They are one and the same most often. All of my life I have had a hard time reconciling that God could love me and love my outrageous sense of humor; it seems like I have always been so "irreverent." Actually, let me, for the record, say that I believe all things are sacred. So, irreverent yes? Sacred? Yes again. But, that doesn't mean I'm not going to also see the complete paradox, irony, and incongruities that often just sit right on top of one another and stare me in the face. Life makes me cry----and laugh. And joke. And say things I shouldn't.
So, it's Easter and here's my religious story to go with all your Easter eggs.
Last year Taylor had another MRI at the hospital. Since he has to stay in that iron-lung looking cave machine for so long, they have to do an MRI "with sedation." All that means is that they drug him to make him woozy. Taylor walks and runs well. His legs work great. Let me just lay that down as background information. So anyway, after the MRI, he was put in a wheelchair and I wheeled him out to the patient pick up circle. He was drugged and dazed (even more than usual.) Leaving him in the safety of his wheelchair, I went to bring the car around. In the meantime, a well-meaning, earnest man had struck up a conversation with Taylor. As I approached, I could hear the man saying, "Good. Good. Excellent. Praise God! That is just great!!"
Sensing the quizzical look on my face, the gentlemen allowed that he and Taylor had been talking about Jesus.
Taylor...talking? About....anything much? But about Jesus? Hmmmm. I would like to have heard that. I love it when Taylor talks---Ever.
Come to find out the man's joyous rapture was that when he asked Taylor if he was saved, Taylor had told him that he was. (I would have loved to have heard that conversation too. Taylor will answer yes if you ask him if he's a citizen of the Czech Republic.)
The man went on to tell me how, when he saw Taylor, this special retarded person of God, confined to his wheelchair, he knew that he needed to make sure that Taylor's soul was saved. So he began his witness. He was on soul patrol. Evidently, the "witnesser" was relieved beyond measure that this handicapped, paraplegic had already found Jesus. Had he learned that Taylor had not already been saved, let me tell you that this man would have had his work cut out for him. Can I just remind you that Taylor thinks Bambi talks?---Just saying.
The gentleman shook my hand noting,"mission accomplished." He did some praise stuff. He stood as he watched me load Taylor into what he assumed was our specially outfitted vehicle.
Well, my friends,I just couldn't stand it. The worst and the best parts of me showed up and took over. Without batting an eye, and in my most sincere and commanding voice, I said,
"Taylor, get up and walk to the car."
Taylor, got up out of his wheelchair and walked to the car---like he had been doing for years.
You should have heard the man screaming. Another miracle.
I couldn't help it. Of all the ways he could have interacted with Taylor, sharing the four spiritual laws looked like his best plan? Another hmmmmm.
Taylor's soul?
Taylor's soul is pure and radiant.
It's Easter.
I am thankful that Taylor can walk.
I am thankful that Taylor has a heart full of love.
That's no joke. Sacred stuff.
All of this--sacred. And, it's still ok to laugh.
BTW, he is not from the Czech Republic, even if he answers, "Yes" when asked.
Alleluia on all counts.

On a Friday

We used to get Good Friday off from school. The year I went out to Michael Jones' trailer, Good Friday was a school holiday and then, of course, we had the rest of the week. So, like, we could go to the beach or something. Easter Break. Michael was in my homeroom and I taught him social studies in the 7th grade. He was white, had been in ten foster homes and had the worst teeth I think I had even seen on a child. The soles of his shoes flapped when he walked. He was back home living with his mother and younger brother out in a trailer north of town.
So, on that Good Friday, I loaded Taylor in the car, along with two Easter baskets and headed to Michael's home. It wasn't a real trailer park. It was gut-ridden slab of land with three, what used-to-be habitable trailers, perched on some concrete blocks. Of course there was that proverbial dog on the rope out in front---angry, mangy, mean, teeth-baring dog. Neglected like the property--like the children inside.
You see, my plan was to knock on the door, deliver these two Easter baskets with magic markers, candy eggs, and a Game Boy--- to Michael and his brother--and leave. Michael had tugged at my heart---gnawed at it. His situation was too big for me. But, heck, I could do Easter baskets. But we wouldn't go in. No, Taylor and I would stand on the porch and hand over our purchases to the boys, do the whole "Eastery thing" and go.
Duct tape held the cardboard where the window used to be. The aluminum door, unable to be closed completely, was open. Taylor had one basket. I held the other. Of course, like always, I had not given Taylor any instructions. I knew he would follow my lead and just do what I told him to do. Give them the baskets. Tell them Happy Easter. Leave.
When Michael saw me, he grabbed me around the waist and sobbed.
"How did you ever knowed where I lived? My mama ain't here now. Just me and Toby."
I looked past him and saw the bare mattresses on the floor. Not one chair. Not one table. Two bare mattresses piled with rumpled up clothes. The clothes Michael had been wearing to school. On the hot plate were the residual, burnt pork and beans in a dirty, handle-less pot. No tv. No lamp. No mama around. Two young boys.
Good Friday.
"Well, Taylor and I brought ya'll some Easter baskets. Tell your mama we came by."
Chit-chat. I, repulsed by the decay, gave in to my own sense of, "This house is in shambles. These lives are in chaos." I think I sort of left my body. I had so much judgement and arrogance sitting right on top of that benevolent coating that I had marched through their door with.
Without one word, without one smirk of "Isn't this just pathetic?" Taylor moved past me and plopped himself right down on that bare mattress on the floor. Right on their mattress. The voice inside my head was shouting, "Lice! Fleas! Urine! Grime! Don't touch that!"
But Taylor sat. And he waited for Michael to sit.
"Looks like he likes our bed," Michael shared. "It ain't made up yet."
(Made up??? Heck, there hadn't been any sheets in this trailer for years!)
My dis-ease, my un-ease, my anxiety was rising up around my throat. How could Taylor just walk in here and sit himself down there on that...on that....on that...filth---that child's bed/chair/sofa/rug/comforter/all purpose place?
I guess that's when the stillness came. Right on that bare mattress were the Easter baskets. Taylor, Michael and Toby all piled in together on Good Friday. One little group. Connected. Joined. Doing their own form of Easter.
And there was I ---apart. Afraid. Looking at life from a distance. A visitor. I would not allow myself to land in that space. I was too good; I was better.
I was on spring break---getting ready for Easter.
I had not given Taylor instructions that Friday.
He did not follow my lead.
He moved without fear; he moved towards love.
Taylor saw Michael and his brother as people.
He sat down with them.
He sat where they sat.
He was just where they were ----as if it were any Friday.

After Supper

It's Maundy Thursday. Please indulge me. Read no further if anything "churchy" turns you off. This is the day of Holy Week that speaks to me the most. I love the music I was brought up singing on the day of the night of The Last Supper. (That last sentence didn't make sense, but I'm keeping it.)I wanted to write something profound, moving, meaningful. Nothing fits. The name Jackie Barnes is in my head. All that I can think of is the first year I taught school--forever ago. I was 22--so 34 years ago. It was a middle school that had once been an all black school and still carried both the scars and the majesty of that time. We were leaving for Easter break. Jackie Barnes was his name, this 7th grader-black child---very very poor. He was so poor that his house had been condemned. Jackie, his mama and brothers were awaiting a spot in public housing--a huge step up.
But on that Maundy Thursday,Jackie brought me a gift to school---for Easter. He was shy as he shuffled up towards my desk in his attempt to offer this gift without the other kids seeing him. He said he wanted to give me something beautiful because it was Easter---and because he loved me--he said. Jackie presented me with his gift--with quiet ceremony but with great humbled-ness. From behind his back he brought out his present all wrapped up in aluminium foil.
"That's all the wrapping paper we had at home, you see."

"Oh, it's lovely, Jackie. This is exactly the kind of wrapping paper my father uses. It's my favorite wrapping paper in the whole world," I assured him.

Placed inside the heavily crumpled foil were two brocade tassels. The kind you see that hold a pair of draperies back. "These are the most beautiful things we have in our whole house. I want you to have them, Ms. Causey."

Jackie Barnes, child with almost nothing, had brought me the most beautiful possession in his home. For Easter.

Here's my big fat spiritual question for today: What do we do after supper tonight?
If you do the whole communion thing with a group or at your house, where does it lead you? Or does it?
After supper. After you sup and drink.
What? Who? What next?
Is there a gift waiting from you?
For you?
Just asking.

Time Lapsed--As Seen On TV

I know that my neighbors and friends probably look at Taylor and me and wonder how I can pull all of these great revelations out of what I see in him. When you meet Taylor and are around him, it just seems like so very little is really going on. There is often little affect, very few words and to the "naked" eye, just not much happening inside that little guy. But, I'm with him almost 24-7. I know every nuance, every sound muttered and not muttered. I see vague smiles. I feel soft touches. I see the tilt of his head, the grimace of his face, and how he holds his hands. I suppose being with Taylor is a bit like being a bird watcher. Every movement is meaningful. Or a gardener. Little sparks of green mean new life. Or maybe like paying close attention to ants if you're lying in the grass. Fascinating. Seriously. Or maybe a little like Jane Goodall as she studied primates. Jane observed hour-upon-hour eventually documenting behaviors and customs most of the rest of us would have missed--in our drive-by safari jeep. If we don't sit very still, sit very very still and wait and notice, we miss a lot. Because what often is going on (in all of us) can be so subtle that just to glance casually--to do drive-bys in each other's lives--- nothing of "importance" tends to show up.
I love watching shows on Nova that have all that time-lapsed stuff on flowers blooming, fetuses growing, on erosion, on anything fast-forwarded from one stage to another--you know what shows I'm talking about. It's that fast-forward, WOW-revelation, that takes us from something seeming ordinary to the unfolding of something spectacular. Whoa! When did that happen? What was I busy doing while all of that was unfolding? It's the before and after of extreme home make-overs or any make-overs that just dazzle us. Man alive! Just look at that change. Whew.
But, life doesn't happen in time-lapsed video. Life happens one small step at a time. Day-in-day-out, step-by-step, breath-by-breath. It seems so ordinary. Some days our lives might even appear as if there is nothing to look at---nothing of value to see. But, what is it that we're looking for anyway? What are we expecting?
What are the guidelines? What page in the rule-book explains, "Now, this, my friend, is extraordinary! Take note."
What is going on when we look away or when we stop paying attention to ourselves and to those right at our elbow? I know good and well we've all had parts of our lives that have thrown us for a loop---so much so that we knocked ourselves out asking, "How did I not see that coming? What was I doing? How long had that been going on?" Every single one of us can tell a story, "I have a friend whose....child, wife, mother, brother...." and then use words like addicted, adultery, bankrupt, arrested, left, cheated, died. Where were we? Were we not looking? Were we not wanting to see...not able to see?
Being around Taylor for me is sort of "Zen" whatever that is. For you Yoga types, does that mean being totally in the present moment? Being in that moment that holds promise and richness and fullness---and is, in truth, the only moment we have. Is that what Zen is? How come it is that we mostly end up being so disappointed in that moment? What would that moment need...who would we need to be to see something...magical? Every time. Every moment----Oh Lord, I know I'm going overboard now. Ok, let's start with six minutes a day of magic. Can you handle that?
In studying Taylor's life, in being his mama and protector and the "pitcher" in our ball games, I get to glimpse magic a lot. If I sit still and just notice, I am able to see a human being who loves himself for who he is. I take mental notes and see that Taylor wakes up without prejudice, without worry and without holding any kind of hatred in his heart. All slates are clean every day. And, of course, there's that love thing. It's just there. Ready when you are. Is that mystical, magical, sacred, and rare? If the videographer from Nova time-lapsed Taylor's life, what would show up is just bigger, more expansive, fluorescent and transcendent love. Right before our eyes--but only if we're still will we see.
What about you? Are you paying attention to the magic in your life? Can you stand it if I use the words divine and holy? What happens in you and in your day that is holy/whole? Will you cower and go numb if we talk about living in amazement? When I look at Taylor--and see what others do not see, I hear these words from Mary Oliver:

"So every day
So every day
I was surrounded by the beautiful crying forth
of the ideas of God,
one of which was you."

Substitute your name for you.
I'll do it too.
Now pay attention.

Is He Hooked to any Machines?

I know this is mean sort of, but when Taylor was much younger, even back then we had a hard time finding baby sitters. Sometimes we would go over to the dorms and just put up sign asking for sitters. We never told them in advance that Taylor had Down Syndrome, because the minute we did, we detected panic and that "deer in the headlights" timbre in their voices. So, we'd wait until we picked them up and while driving them to our house, we'd say, "And oh, yeah, our youngest son has Down Syndrome." Silence. Un-ease. That proverbial pregnant pause--space in the air.
And then it would be, "Oh, uh, well, is he hooked up to any machines or anything?" I guess they thought they were going to have to deal with a ventilator or something. And this is where we'd do the hail Mary pass of an answer, "Yes, actually to several machines. After you put him to bed, you must keep the vacuum cleaner going at all times. And the washing machine. He loves both of those sounds. The sound of the dryer running (and of your folding clothes) will keep him from seizure-ing." We'd come home to a very clean house--vacuumed with clothes washed and dried--no seizures thank goodness. It's amazing what the whir of some machines can do--must be the white noise.
Our marriage did not make it. There are all sorts of statistics describing the high divorce rate among parents of special needs children. Being a parent to a typical child on a good day can be stressful. But to new, young, fearful parents, raising a disabled child can uncover other cracks that were probably there in the marriage to begin with. I don't know if it's human nature or not, but there was something in me that just needed to know WHY I had a son who would need so much help all the way through life. I vacillated between screaming at God, hating God, needing God and retreating from God. I did the same thing with Taylor's father. Although I knew intellectually that it was nobody's fault, I secretly was ready to blame those closest to me on the path.
Giving birth to a brand new baby with special needs is a loss of sorts. It's the loss of the child I had in mind---had dreamed of--had planned for--had visualized making my life complete. Loss is loss. Each one of you reading this has experienced loss. You might be saying to yourself right now, "Yes, but it wasn't like yours." Let me repeat: Loss is loss.
And we need to grieve our losses. If we don't, we'll wear them or eat them, or drink them or isolate ourselves into our own form of despair. So, yeah, I did the five stages of grieving (Denial, Anger, Bargaining, Depression, Acceptance) about 45 loops each---sometimes all in the same day---for sure all in the same year. I'm still doing some of the stages in spurts and starts. I got stuck in some of the stages for longer periods than others. I am a huge bargainer with God. You can't even believe it. I should be locked up for the inside deals I have tried to make with him. Some of them make me laugh. Thank goodness he saw right through me and totally ignored all the convents I promised to live in or all of the chocolate I swore I'd give up. (I am still convent-free and chocolate IV'd---so no deals ever went down.) But, let me make it eminently clear: I am still totally willing to bargain---and I'm not against bribery either. Sad but true.
I am not sure at what point I came to acceptance. Actually, I am not all the way sold on acceptance. It's still a process for me. Because every time a milestone should be taking place in Taylor's life, I have to regroup, sit still, cry for a while and then come to terms with what is. What is--- is this precious life---not the life I dreamed of or wrote about in my 9th grade diary. But a different life with different textures and short buses and more wheelchair friends and bowling alley lanes with bumpers lining the gutters. It's different. It's nobody's fault. And, I don't blame anybody anymore.
But....about my fat legs. I totally blame my mother.
It is probably not her fault, but I still blame her.
Unless God gave me these chunky legs.
So, there's another blame option.
Oh, heck, what if I just took responsibility for my life?
Now, there's a thought.

Don't Even Think About It.

Oh my goodness. I have so many rules for my life. And yeah, right about now, I am so certain that none of you better be wearing any white shoes---not until Easter. Do you hear me? (Is that a southern thing or is it in the Constitution somewhere like my mother said? Maybe she said it was in the Bible. Either way, it is a very important rule. It's one I have followed all of my life and would not dare break no matter what. After all, it's a rule. One that was supposed to both impact and change my life--so I was taught. Isn't that why we have rules anyway....to help us with our lives?
When we travel to the beach in our car, Taylor knows that the rule for our dog, Murphy, is that he stay on the back seat. This is a rule. I always drug Murphy, but it never seems to work; he tries to sneak up front most of the trip. Every time Murphy wedges himself between the back and front, Taylor comes out with this Sargent sounding, "Don't even think about it, Murphy." Then he promptly tries to toss Murphy back. Of course all of this rule following and breaking is happening while I am driving 80 mph down I-75. None-the-less, Taylor knows what I've told him and he does his best to enforce my rule. I, on the other hand, have begun to weaken and am willing to forego the rule just this once---again. But no! "Don't even think about it!" shows up again and my inability to follow through is spotted and noted.
"Well, it isn't even a very good rule," is what I try to justify to Taylor.
Rule--Smule----I am ready to throw everybody out the window because I can feel myself collapsing around what I thought I believed.

Do you ever eat dessert first? OK, forget that. Do you eat between meals? Do you have a rule that you will never go to bed with dirty dishes? (I do. Yes, I know I need to get a life.) Never leave the house without brushing your teeth? Exercise at least three times a week? Not drink before 5:00 (and yes, it's always after 5:00 somewhere.) I know. I know. You probably don't have them written down and anchored under a magnet on your refrigerator, but in your mind, they are your rules.
But let's say... what if you were being observed from above--like from Sky Cam? What rules could the guy with the clipboard write down about your life by the end of the day? 'Cause isn't it true that if somebody really wants to know the rules of our lives---what rules our lives, mostly they just need to see how we spend our time? (And thank goodness they can't see inside of our heads...right?) So, here are some. Check yes in the gray box if any of these apply to you:
Fake Rule #1:It's Ok to hold grudges but pretend like we don't.
Fake rule #2: Say that inner beauty is more important than outer beauty but make digging comments about people's hair, teeth, clothes, weight.
Fake rule #3: Say we love all people but condone words like fag, retard, colored and certainly keep our relationships homogeneous. (Look it up.)
Fake rule #4: Express a willingness to offer the shirt off your back...unless the shirt is from Saks.
Gosh. You got it. I got it. We have rules that we post and then rules that we actually follow. But, those dumb rules---like about white shoes, those aren't really the rules I'm talking about so much. What about the inner compass/moral/comandment (if you will) type rules. The biggies. How are we doing on those? I can get a little flimsy in my own daily life with the interpretation of words like honor, covet, false witness, ..... and the greatest of these is....love. Ooops. Broken that one lately? So, here's my big fat spiritual question for today: What if, every time we were about to go against our true north---against our own morals--the rules that keep us whole/holy ---what if we allowed ourselves to hear, "Don't even think about it."? How would that little prompt feel in our lives?
Some days it seems like I need that cue card about a million times. I might be veering off course---going against what I know to be right; I need that voice that says, "Don't even think about it." Don't say, don't do, don't eat, don't engage in, don't "go there"---that thing that will bring harm, hurt or hate to another person. It's a rule. Like bigger than the white shoe rule.

So, here's the best set of rules I know for living this life. Whether on dry land or on in the water, some variation of these rules work every time.
Think metaphorically if you need to.

Lean back.
Keep your skis together.
Let the boat pull you up.

Good rules. Probably in the Bible or Constitution somewhere.
Anybody else out there trying to pull the boat up?
Give it a rest.
Let the boat pull you up.