Wednesday, March 31, 2010

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.

Tuesday, March 30, 2010

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.

Monday, March 29, 2010

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 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 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.

Sunday, March 28, 2010

Sing Your Song Whatever It Is.

I end up playing word association with Taylor most days. He frequently just gives me one word (his sentence) and I then launch from there until I land on what it is that he is trying to tell me. I have to go back and quickly scan everything we've done for the past 12 months, but usually I can make the connection. This morning the first thing he said to me was, "Dreams." Well, one of you guys might think (naturally/obviously) that he would tell me about a dream he had had. Uh, that's not really possible----that he'd talk about, not that he would dream---but that's another blog. So, the word, dreams...scanning now. Got it. Yesterday we had watched Cinderella (again!) and had sung along: "A dream is a wish your heart makes, when you're fast asleep.." So, I got that one! Name that tune: 20 points.
He especially loves "Bella Notte" from Lady and the Tramp: "Oh this is the night, it's a beautiful night. And we call it bella notte." When I tell you that he likes it, that means he sings in his own beautiful interesting-tone way and he sings one or two words from the song. My cue word for Bella Notte is the word, Stars.
So, again, I win both Word Association and Name That Tune all in the same breath. (Washer and the dryer are prizes for being able to do this, I feel certain.)
I love to sing. I sing all the time. I know lots of songs. Well, actually I don't know any current "hit" songs. But I do know lots of old "If I had A Hammer" type tunes. (Somebody call the "This woman needs a life police!") I promise that this will be my last true confession for a very long time---maybe even until tomorrow. But, when I was younger--like in middle school, I used to hide away in the room I shared with two of my sisters. When nobody was around, I would put on a record (vinyl record, on a record player---you can google that if you are younger than 40) and listen to Bach and Beethoven and Mozart. And then, (this is the part you have to swear not to tell anybody) I would conduct those pieces in front of my very own (imaginary) orchestra. I loved that kind of music early on. But I never told anybody. It just spoke to me. I was a geek from an early age; I hid it by being funny. I am still a geek, a nerd---but funny.

If you're still reading this and wondering where it's going, get in line. So am I.
No, but one Sunday, Mrs. Adams, had her 8th grade Sunday School class (of which I was a part) write down our favorite piece of music. She passed a wicker basket around to collect our answers. I guess this was the precursor to, "Is that your final answer?" and so, "Lock it in." So, I locked in my answer along with 15 of my brilliant peers. Oh Lord, my stomach aches as I write this and you've already guessed part of what's coming. Sure enough, Mrs. Adams read, "Steve, lovely. You wrote: Pachabel Canon in D. Beautiful." and I think Bill wrote, Grieg's Peer Gynt. Ginger probably wrote Chopin's etude number so and so,Opus whatever. Oh dear me. Oh help. I had followed my heart; I only heard one song in my head that day. I knew all of that other music, but on that Sunday morning, the piece of music I loved most in the world was a song called, "Just Walk Away Renee" by some singer I could not possibly remember today. Yep, I had locked in "Just Walk Away Renee" as my final answer. Fast forward: I did not die. I thought I would, but I didn't. Oh, I loved Mrs. Adams. I'm sure she didn't, but that dear woman said, "Oh, Marianne, I love that song too." (Not!) She probably had never even heard it before but, she saved me. Sort of. Some. A little. But who cares? It was nothing that twelve years of intense therapy couldn't fix. But nothing--not even that could squelch my love for singing.

For Taylor, music must be what his feelings sound like. Along those same lines, Victor Hugo said that, "Music expresses that which cannot be said and on which it is impossible to be silent." My guess is that's why Taylor likes to "sing" Making a joyful noise is familiar to him. He knows that it makes him feel better to break forth into singing. Taylor knows it.
And you? Even if you don't sing well--or good or often. Even if you only sing one word (Dreams/Stars) Even if you sing Pachabel or "Just Walk Away Renee". Sing. In your own way, SING!
With Taylor for sure, music begins even when he had no idea what the words are. (Like who honestly knew Bella Notte?) You know what? Taylor has no comprehension of what the words to his favorite song mean. But, on some level, the song touches him.
I am locking in these words---and this music--as Taylor's favorite song today....Final Answer:
A dream is a wish your heart makes
When you're fast asleep
In dreams you lose your heartaches
Whatever you wish for, you keep
Have faith in your dreams and someday
Your rainbow will come smiling thru
No matter how your heart is grieving
If you keep on believing
the dream that you wish will come true.

Friday, March 26, 2010

Checking In

If you ever pass Taylor and me on the street, do not be surprised if he is turned straight towards me with his nose up against mine, looking me straight in the eyes. We can be walking anywhere--in a parking lot, down a city sidewalk, in the women's dressing room at Steinmart--and Taylor will stop, turn me towards him, frame my face in his hands and search my eyes. He is checking in. That's my best guess.
Without having much language at all, Taylor takes his cues from stimuli, commotion, and the interactions of people around us. When it seems like it's all too much for him, he just takes a time out---and pulls me along with him. I know that he must be wanting to tell me something, but there are no words. There is just that, "Be still. Be close. I'm here. Are you still with me?" It is very tender and very dear---except for when it's not. Sometimes I'll be right in the middle of handing the lady at Sam's my credit card, or I'll be dodging six lanes of traffic, or rain may be pouring down all over my great hair do. I feel this tug on my arm. Taylor is checking in.....again. "Are you here with me?" he searches me.

You know, I would have to say that I was never much of a dog person growing up--not even a pet person. There were eight kids in my family and even though we had a dog, my parents treated him like...well, a dog. I know that we left town for six weeks at a time for the beach. I have no recollection at all about their making arrangements to have Rusty fed. Anyway, that's another guilt thing that I won't explore now. But, now things have changed some. Years ago, Taylor's speech therapist insisted that we get Taylor a dog to facilitate his language expression. So we bought Bone (beagle) and then Dolly Dog (yikes! hyper-Basset) and now we have Murphy (fake Lhasa). So, yeah, I am now a dog person. That whole last paragraph was to lay the groundwork for my forthcoming astute observations and insights: Dogs check in with one another. (Was that worth the wait? Did you animal folks already know this?) No, seriously, when dogs meet one another, they sniff, circle, smell, do a little alpha male type thing---you know, check in. And when they're all secure and feeling all safe, they take off and romp and interact. (I think I've had too many counseling courses. Interact???) I mean play! And, then after some mingling and meddling, (okay, what are dog words for what they're doing? Maybe I'm not a dog person) they check in again. Nose-to-nose, smell-to-smell, rib-to-rib--they check in as if to ask, "Are we still friend-ly?"
Maybe I have a greater need than most of you to check in with the people I love. "Are you alright? Are we alright?" It's important to stop our frantic attempts at life to turn towards our fellow people and ask, "How are you? Are you in there somewhere? Are you above water or just barely hanging on?"
I know that it would be way out there if we all checked in like Taylor does: our faces placed in gentle and safe hands, pure and observant eye contact between us, and just holding the moment in stillness and silence. Yeah, that would be preposterous, wouldn't it? So, what would be a sort of half-way and acceptable way for us to check in with one another so that we really see---see each other as we are? At that moment? In that space? Are we willing...are we able to stop, ask, and see what the other person's breathing looks like?
Well, actually, I am thinking that when Taylors stops me and turns me that he is not seeing me with his eyes, but with his heart. Maybe that's why I feel so safe and so willing to oblige. When we do take time to "see" each other, we might hear what is not able to be spoken. And, I'm going to borrow only part of a quote by Tennyson here, "Our eyes are homes to silent prayers."
Gosh, with Taylor, I am not certain if his silent prayer/checking in is saying,
"Let's go to Wendy's or "We look like crap, mama" or "I wish I were home watching 101 Dalmatians." or "I really hurt right now." It's hard to know. I have to really pay attention and then decipher from there.
But, for you and yours? What goes on there?
How do you check in with those whom you love?
Do you stand close? Are you allowed to frame their face?
Is being still in their eyes a safe place to be?
What are their eyes saying to you in that silent prayer?
It really and truly might be something as simple as "You have broccoli in your teeth." Or maybe it's not.
Keep dental floss and an open heart handy.

Thursday, March 25, 2010

Our epitaphs

I taught a class to middle schoolers once in which the curriculum required that the students write their own epitaph. Now don't go getting all macabre on me because it wasn't like that at all. Actually, it was a pretty cool exercise to try and get these 8th graders to think way down the line. Yeah, like way down the line. I guess that may have gone under the category called "Long Term Planning." But really and truly, it was an exercise to prompt them to consider, as seriously as they could, what they would want to be known for when all was said and done. I know. I know. That's hard even for those of us who are...ahem....way on up there. We mess around all day in our lives and then those days turn in to years and then those years add up. Writer Annie Dillard says that how we spend our days is how we spend our lives. So, the next thing we know.....well, somebody might need to write down something---very succinctly about us...on a piece of marble or granite or someplace lasting.
On my mother's grave, the head stone reads, "Mother to many, Friend to All." I wonder if that's what she would have chosen. It suits her, though. I am ashamed to say that my father has been dead for eight years and the eight of us, his children, still have not come up with a head stone for him. It's a long, complicated story that involved his body being sent to Emory and then his last wife doing screwy things. Two memorial services later and we have not written his epitaph that speaks to the sum of his life. It's too hard---too hard for all of us to agree on what to say--and too hard to compress a life into ten words or less.
I know that none of us reading this (or writing this) is living our lives with the intent of hoping somebody will one day write something really nice about us on a chunk of stone. But, if we even had any input into it, what is it that you would want your epitaph to say? At the end of the day, what is that you would most want others to say about you? Like in 10 words or less? That's harder than writing a haiku maybe--but, yeah, if the whole of your life were reduced to haiku. What would it say?
I mean, if it were something true. If it really reflected what you had offered to this life, to this earth, to all the people whose paths you had crossed.
My precious friend Eve's marker simply says, "Beloved." Complete and true.
Is there one word like that for you and for me? How do we show up in this world to others? What is it that they see in us or do not see in us? What would our lives compel another to say if they told the truth? Uh-oh.
I guess what I'm trying to say is that who we are counts. You know students always ask a teacher, "Is this important? Is this going to be on the test?" Well, life is kind of like that. Yes, 'how we are' is important, and yes, it's going to be on the test. In fact, it's already on the test. We are seated with pencils sharpened. We are in the midst of taking the test. Did we forget that in the midst of all of our busy-ness? Did WE think this was the warm-up?
Here's the good news. At least it's good news for me. Even if we've chosen some pretty "crappy" things before today, we get a chance to choose anew--all new today.
It's sort of like that saying, "It's never too late to have a happy childhood."
It's never too late to rethink who we want to be.
So, back to working on your profile, the picture you're painting of yourself in this life. Are we not in the midst of making our mark--even today, even now? I think about this every day as I parent Taylor. He just lives so purely and clearly and cleanly. He is easy to sum up: Pure in heart...shall see God. And I just do my best to mess it all up by cluttering him up with stuff that probably doesn't amount to much. Hmmm. What does he know that I don't?
Not that any of us would ever consider that anybody would write the word, "Saint" on our markers, but here's a story to churn on as you think about your epitaph.
In church one morning, some young children were asked, "Who in here can tell us what a Saint is?"
One little fellow piped up, "I think I know."
Looking up at the beautiful stained glass windows of Matthew and Mark and Luke, lining the walls of the sanctuary, the boy offered this, "A Saint is any one who lets the light shine right through them. Just look up there. See the light shining through them? That's what a Saint is."
I am not sure what all it entails to live a life of purpose, love and meaning.
But, I am pretty sure we cannot go wrong at all if we let the light shine right through us.
An epitaph? How about:
He let the light shine right through him.
Ok, so, here are my two top choices:
1. She looked damn good in that bathing suit.
2. She let the light shine right through her.
I must be honest; it's a toss up.
Ok, Ok, I'll go with the light shining through.
Can I have two though? Bathing suit and light?

Wednesday, March 24, 2010

Change is inevitable; growth is optional.

I'm not sure it would have been helpful or not if one of my teachers (I can't remember who taught me about Ancient Greece) had given me a heads-up that my life would be---or had the potential to be-- a whole lot like Sisyphus'. This is really just the "victim" in me talking, so indulge me for a minute or two. Sisyphus ended up pushing that same damn rock up that same 'ole mountain, only to have it fall back down again to its starting point. Day in and day out. Same rock. Same boulder. Same mountain. Yep, a labor that was both futile and hopeless. Anybody? More Sisyphus' in this studio audience? We've all heard that saying, "Insanity is doing the same thing over and over again expecting different results." So, why in the heck do we allow ourselves to get caught in this cycle? Hmmm. Some days I know. Some days I don't.
Yesterday was one of those days I didn't know, but by golly, I was not about to push that rock aside and walk back down the mountain without it. Gee. I am so persistent and hard-headed. Others? Are you in this club with me?
Taylor was in a lot of pain yesterday. I can tell because (1) He says, "I hurt so bad." Although he cannot then go on to describe the pain or tell me where it located. (2) He says the same thing over and over and over again until I just want to scream. He says, "Boo" times 1000 and then he says, " What's wrong?" times 10,000. His little eyes are vacant, yet pleading. I feel completely impotent and not capable and unable to "fix" him. Oh my goodness, I hate to feel that way.
So, I push that rock up that mountain. The rock yesterday had a huge label that read, "You can control all things. You can fix this. You know what to do." Heave. Ho. Push, Grunt. Frustrate. Heave. Shove. None of it worked. No matter how hard I pushed, no matter how frustrated or tense I got, his pain did not go away.

I am not sure what came over me late in the afternoon, but something did. I took a chance. I breathed. Oh, I so love how words overlap and connect, 'cause if you hate the word pray, then go with the word breathe. Breathe is from the word spirare--spirit--spiritus---soul, courage, breathe. I breathed.
I opened myself up for a shift--internally--inside of my mind. I just quit fighting. And, then, I asked, "Is there any other possible response (from me) to what is going on right now? Is the only way I can see this is through anxiety, "failure," fear and frustration?" It's funny. I sort of took myself to my own course in "Inward Bound." And, yes, I prayed--breathed. I stood in my very own kitchen and I said, "I don't know how to do this. I don't know how to be thankful for this. I need help." I stopped---even for a few hours--pushing that same rock (futile!) up that hill. Are you reading me? Is being in control an issue for you? Do you think you can "fix" things even if you know the words in your head that say, "You are not in control."? There is a higher power at work here, so just relax? Arrrggghhh.....God's wife was showing up and showing out. Yikes!

My friend, Terry, was telling me something this morning about a friend whose life is in a landslide. Everything has changed dramatically for this family. After asking how they were, Terry observed, "You know how people say that brown is the new black? Well, when you say things are "okay," you may mean the new okay." The new normal. The new change. The new way of seeing things---feeling things....knowing things.
I know this: everything I resist.....persists. Every time. The more I resist, the more the feeling/thought/belief just stares me right in the face. My worries are just waiting for me to sit them on my lap--like I would a young child--- with kindness and gentleness and love. I am not trying to be all "ooey-gooey bag"/encounter groupy here, but my feeling/thoughts just want to be heard, noticed, acknowledged---so I can put some love around them and then......let them go. Chances are good that they will come back, but maybe next time I can welcome them (these thoughts...these feelings...these rocks/boulders)) as friends--not enemies.
I know that some of you are totally turned off by what I just wrote. That's okay too. It's the new okay.
So, here's my big, fat, spiritual question for today:
What rock are you pushing up that same mountain today?
Are you willing or able to stop and breathe (or pray)---just for a bit?
Would you be willing to allow for change....just for one minute---ten hour?
And, then, of course, there's growth---in case you're interested.
The growth part, of course, is optional--for you. For me.

Tuesday, March 23, 2010

Sorry. I Cannot.

Taylor's brother and father are both quite musically talented. That means that we have lots of opportunities to go to concerts to hear Mozart or Dvorak and see/hear the blood relatives play violin. Unfortunately, Taylor hates concerts. Because he has very little sense of time and because reading a program tells him very little about how much he will have to endure, you can see Taylor coming up with his very best argument against going. What it really boils down to is, "Sorry. I cannot."
I sort of like that. He's being asked...told... that he needs to put on something besides sweat pants, that he needs to wear a belt and jacket and then sit in a concert hall to hear music he may not even like. Sorry, he cannot. Of course, he will and he does, but he gives it best shot, "Sorry. I cannot." Fortunately, I can still outsmart him, so it almost never works for him. And, besides that, there's always that parental knowing: Sometimes in life you are going to have to do stuff you just do not want to do. Bitter medicine at times.
Taylor used to say that about a lot of things we requested. Write your name. Sorry I cannot. Brush your teeth. Sorry I cannot. Eat this food you hate. Sorry I cannot. There was no veil, no wiggling around and making excuses, no feigned attempt at trying. No, he just put it out there: The request was simply not anything he was remotely interested in doing at the moment---or ever really. Kind of like a lot of us actually. Those requests don't sound so big, do they, in the scheme of things, I mean. I just wonder why we all tend to balk, then when it's our turn to stretch.
When we were growing up and our father told us to do something, of course we balked...and then got spanked and then got the broken record learning lesson: "Just say yes sir and that's all." I was right in that camp of children that accused my parents, "Oh, you just had us so you would have somebody to do the dishes for you!" I was convinced that the only reason my mother wanted any of us on this earth was to get up and find her the remote control. I know I said lots of sassy things under my breath, but "Sorry. I cannot" did not escape from my lips out loud.
My parents were what you might call "old school." I valued my life too much to be standing too close to them...and talk back. "Sorry. I cannot,' never made it out loud--to them.
Yes, I thought things were rough and that way too much was asked of me. But really an indelible and invaluable lesson was taught to me by requiring me to complete tasks I did not want to do, to go places I did not want to go, to experience things I did not want to experience. I guess you could say that it is times like that in which we build grit and muscle and strength of some sort in ourselves. It sounds a bit like the word, discipline: practice, prepare, cultivate, train, tune-up. And discipline makes me think of the word disciple. (Don't freak out here, anybody. I'm not going all "churchy" on you.) Disciple means learner. See, you lived through that definition. Whew.
So, here's my big fat spiritual question: What is it that we want to learn?
To learn about who we are and where we're going and what our purpose is---like on this very day. Of what will we be a disciple....a learner?
What if something comes to you ---a calling maybe, a voice, an intuition, a hunch, a request---in your own personal life? Yeah, about your purpose.
What are you going to say?
Sorry, I cannot?
Nice try.
Oh heck, take off your sweat pants.
Put on your belt and jacket.
Feel the fear.
Do it anyway.
Sorry. Yes you can.

Monday, March 22, 2010

Thank you for Not....

Dr. Phil(my new best friend) says that we teach people how to treat us. He says that what we allow others to say to us and do to us is our own doing. We give cues and clues to other people that say, "It's ok to treat me like this." Heck most of us treat ourselves 100 times worse than anybody "out there." What do you think? (I know you have an opinion on that. Share it.)
You know for years I taught 7th graders. The first couple of years during my teaching career, I would get so angry and resentful if my students did not show appreciation for "all that I was doing for them." I pouted and did this passive-aggressive thing that you may have seen other adults in your life do. (Maybe you do it yourself? Fess up!) I would take homemade cupcakes on a Friday. When no student said, "Thank you," I steamed and stewed and acted all put-out. I am not sure when it finally dawned on me but, thank G_d it did: I was not there to fuss at the kids about what they did not know; I was in their lives partially to train them up to be good people. If they didn't come out with a "Thank You," then it was part of my job to explain to them how to show courtesy and gratitude. Punishment was out; kind training was in. This simple shift made a powerful difference in my classroom and in my life.

I look at what I have taught my own children and what I still think I am teaching them today. Sadly, it does not always match. When my older son, Cole, was a little boy, one particularly hectic Sunday morning we couldn't find matching socks or a little tie and breakfast was late. We were headed to church. (Sundays always brought out the worst in us.) Cole, walking in late to Sunday School announced, "My mother said to tell you that she's sorry we're so damn late." Ooops. Outed. Busted. My language and my angst were showing up all over his little life.

I don't allow anybody to smoke in my house. Have you got a "Thank you for not smoking" sign anywhere close to your back door? That is so clear cut to me: No smoking in my house. It's a rule. My home is my sanctuary, my refuge, my safe place to be. But here's my big fat spiritual question for today: Do I allow racist jokes or cruel gossip or petulant moods or cold shoulders to linger in my home? Is that worse than smoke? Do I have signs up around my house that say, "Thank you for not complaining, being rude, not helping, being self-centered?" How do others know what's ok with us in our lives? What messages do we send that shouts out, "This is who I am. Treat me like this, because that is how I probably treat myself....and will in turn, treat you."

Two of my siblings have little calligraphied notices that read, "Thank you for removing your shoes" near their front door. (Beautiful homes, beautiful people both) So, that's clear, right? Take off your shoes. The message is clear.
But what part of our body language and talk language communicates, " And,don't bring the crud of dishonesty, cover-up, or denial in with you."? Leave your bad attitude and all things you "hate" out by the trash can. How does that look in calligraphy?
If about 90% of what we communicate is not with words that come out of our mouths, what is it that, if there were a sign close by--what is it that our signs would say? Thank you for looking me in the eye? Thank you for calling me by name? Thank you for acknowledging my life's purpose?
Thank you for trying?
Thank you for looking honestly at yourself so that we can be honest together?
Like it or not, we're all wearing signs all the time, everywhere we go, whatever it is we're doing. Right this minute, yes, right this second, what would say?
(Don't you just love white-erase boards?)

Sunday, March 21, 2010


Today I just didn't want to go with Taylor on his scooter. He has one of those push scooters like maybe some of your 7 or 8 year olds have. Yes, thank goodness he likes to go out on it. But, gosh, today I just didn't want to go along with him. I wanted to stay in and read. I have three books going and I just wanted to stay put and underline things and just veg---I mean, just "be." (Okay, veg was right the first time.) The hardest part of my days are from 3:00-6:00. I know that this is in total contradiction to my previous blog on complaining. So, let me just clear this up. I am not actually complaining. I am just sharing. (Are you buying it?)
Because it's in the afternoons that we go on the scooter and play ball and then go on the scooter some more. It seems like I already did this life one time around a long time when my boys were little. Some of you are starting it all over again, but with your grand children. That is the natural order of things in real life, isn't it? But, here's what I really do need for one of you to tell me. What is real life? Seriously, I lose my bearings some days and I cannot for the life of me figure out whose life is "real." My life sometimes seems to be caught in a chasm---maybe like an elevator stuck between floors. I don't have a feel for what "normal" people...normal families do. Am I missing something? When I'm out on the scooter with my 25 year old son, what are the rest of you doing? Anything important? (And, is this something I could do from home? Like stuffing envelopes or something? Competitive knitting?)
Just today I read the neatest thing by the Buddhist teacher Stephen Levine who said, “Hell is not wanting to be where you are. Every time you push against what is going on, every time you don’t want to feel what you feel, you double your pain rather than make it go away." You see, probably like you, I have this idea, this belief, this constant noise in my head that keeps telling me that I need to keep striving to "be somebody." I don't mean like be somebody famous, but like be somebody who has an impact on the world. And, how in the heck can I have an impact on the world if I am out walking behind a Razor scooter three hours a day?
Now please don't email me and tell me that I already have had an impact on the world. Because you know exactly what I'm talking about. Come on. Look at your own life. What project did you work on today? Are you writing a book? Settling a court case? Memorizing a sonata? Translating the Dead Sea Scrolls into eight new languages?
Here's my big, fat spiritual question: Can being a somebody be something really extraordinarily ordinary like, simply being truly present in whatever moment we find ourselves in? What if we're just pushing a handicapped person up a street on a toy scooter? Does that count or should I want to be something more specific--specifically SOMEBODY.

Taylor is completely content to be in the sunshine, scooting along, taking in the sounds and smells around him. I, on the other hand, tend to fight that---and resist my own life. How old does one need to be before that inner voice just relaxes, stops nagging, and maybe even begins to sing?(Oh Lord, I wonder what it would sing?) I can promise you that many of you, my dear dear readers, that you too "battle" this same pressure, yearning, need to fulfill, achieve, prove, win, succeed...this need to be somebody.
Press 1 on your keypad if this is true for you. (See...100% of you pressed 1!)

Tonight, when I was drying Taylor off after his bath, he stopped and softly rubbed my face with the back of his hand. He said, "I love you, mama." And he looked directly into my eyes and held my gaze as if he knew I was questioning who I am and my place in this world. Just like I question his.
He does not know psycho-babble, but if he did, he would most likely say, "You already are being somebody, mama."
Looking back into those sweet, trusting eyes made me think about what the singer Pearl Bailey said: "People see God every day; they just don't recognize him."
Does God ride a donkey and a scooter do you think?
Would you recognize him if you saw him?
Would he recognize you?

Saturday, March 20, 2010

Who is it that you see?

Launching right into it today...Chew on this crunchy little thought: We don't see things the way they are, we see things the way we are. If you'll hang on with me here for about a minute, I know I will have convinced you of this if you are a skeptic. Here's a modern day parable to help you.
Pulling into Athens for the first time, a stranger stops out by the BP on the edge of town and asks the attendant, "What kind of people will I find here in Athens?"
Turning it back on the stranger, the attendant posed this, "Well what kind of people did you find where you came from?" The stranger quickly informed the man, "Oh where I come from, the people are all so negative and selfish and hateful."
Looking him face on, the attendant answered, "Well, that's exactly the kind of person you will find here too." The stranger's expectations were confirmed: more bad people ahead.
Fifteen minutes later, another newcomer stopped at the same BP station. The same line of questions followed between them as well. When asked what kinds of people the newcomer should expect to find in Athens, the attendant queried,"What kind of people did you find where you are coming from?" Quick as a flash, the newcomer stranger rose in his chest and said, "Oh where I come from, gosh those people are the kindest people on the earth. I never met one that was not generous and thoughtful and kind." A smile crept over the attendant's face. He agreed, "Well, that's exactly the kind of person you will find here too. Generous and thoughtful and kind."
Don't we mostly find what we're looking for? If we look for the good, we see the good. If we look for the negative, guess what ends up sitting in our laps?
But, sometimes it's just so darn hard. So, here's my big fat spiritual question:
Do we need to love ourselves first--like love all the yucky stuff in ourselves--before we can love that same yuck in somebody else? All of the voices in my head say, "YES." Now don't go falling off into the deep end and thinking this is just hogwash. It's not. It's for real. You wanna know what you really believe about your very own self? Just listen to the criticisms that come out of your mouth about another person. Change the pronouns from he/she/they and use I/Me/Mine. Do it all day today. Write it down if you need to. Just change the pronouns for one day. See what you come up with by the end of the day.
1. She is so fat (ugly, stupid, spoiled, mean, jealous, arrogant.)
2. He gets on my nerves because he is so boring ( aloof, sarcastic, conceited.)
(Homework: Just change the pronouns for one day. Report back to class tomorrow.)
When most people look at Taylor, they see slanted eyes, a protruding tongue, slumpy shoulders, and a life that would be voted off the island in round one if this were a game show. What do you think they really see when they look back towards themselves? Remember that when we point our finger at somebody else, there are always three pointing back towards ourselves. (Do it now. Try it. See?) But for the wise of heart, for those who see the divine in all living things, Taylor is just a little guy learning to live this life along with the rest of us. He just happens to be 25 and thinks Free Willy is the whale's full name. Anything wrong with that?
I am hearing a version of this quote floating around in my head right about now, "I have met the enemy and he is....I/Me."
What if we did that whole "Let peace begin with me" thing (join hands now and sway) and changed the quote to, "I have met the friend and that friend is"?
Change those pronouns just for today.
If you've forgotten what pronouns are....that's not good.
But's here's help: I love you. Love is an active verb. The other words are subject and object pronouns. We each gotta work on being both the subject and the object of that verb.
So that when you see me, you love me and you.
Just practice today. I'll have handouts tomorrow.

Friday, March 19, 2010


Ok,I take it all back. I don't want to be Sandra Bullock or Kate Winslet anymore. It appears that even they---those whose lives appear to be perfect and have everything--even their lives get down and dirty and real. Looks like the loves of their lives have gone astray---not AWOL--just astray. AWOL may have been easier, actually. Since we're into true confessions on this blog, I will go ahead and remind you that one of my underlying core beliefs (that's a belief I hold, but don't own up to) is that if you're thin and beautiful, then your life must be great. So, here, once again, Sandra and Kate have busted that myth-belief of mine right out of the water. (When am I going to finally learn not to believe everything I think? Do you have that same issue? Somebody tell me!)

I was complaining the other day about something in my life when my friend asked me, "Tell me somebody's bag of junk you would rather be pulling behind you and we'll see about making a trade with them." I thought about this person or that one. Vain and petty traits lured me along for a minute---rich, thin, better educated, more well-traveled, nicer house, thin legs. But what else could be lurking in that bag of theirs that I might not know about? What real life "junk" were they really pulling around behind them in their life's baggage/bag? Hmmmm. Maybe I would just keep my own life with my own little bag I haul around. (And again I am reminded of some other great thought: It's not the wake that drives our boat. The wake is what we leave behind.) How come I know stuff like this and still grapple so much with junk (junque if you're in denial.)

So, anyway, this morning a friend told me this: Complaints Are Signs of Something Preferred, But Not Risked. Read that last sentence again---preferred but not risked. We can each one make a list of things we would like to be different in our lives. Is that true? Are you still here with me? But, and here's the big fat spiritual question I have: What are we (you/me) willing to risk to make those changes in our lives? That really puts the ball back in our court, doesn't it? So,here's a quote from Wayne Dyer that may create a shift--if we're willing to risk it: Change the way you look at things and the things you look at will change. Why do we white-knuckle ourselves, clutching our beliefs like we will literally die if we move off square one? I mean, come on guys, is the only possible reaction to our disappointments to be irritated, impatient and angry?
I think we complain when we feel like we're entitled--so---yeah, most of the time. We complain when we feel put-upon, inconvenienced, interrupted, or when something or somebody gets in our way. We hate to wait, despise it when people are not efficient and need everybody to be in the same hurry we are. You know this is true. Stop tapping your foot, rolling your eyes, doing that cold stare thing. Yes, you may have to wait while the cashier changes the paper tape. How come we think that is going to be what kills us? Seriously.
Somewhere along the line Taylor picked up the phrase, "Stop Your Whining." (Only he pronounces it "grining"--rhymes with whining.) He probably heard it from a teacher or an aide in one of his schools and he uses it quite appropriately. Taylor is my little cattle-prod, no-whining bzzzzzztt person. He zaps me. He can sense the "Aarrgghhgg" in my voice when I get behind a slow car. "Stop your grining." Having to wait through four cars at the bank drive-thru, being put on hold or talking to a receptionist that isn't on top of things--friends not being punctual, not enough clerks at the store, poor service anywhere---all my complaints. And, here's this sweet little voice, "Stop your grining." I hate it. I hate it because I know Taylor's right. He must not be looking at things the way I am. Why is he so damn content? Aaarrrgghhh. Maybe I could change.
My little three year old friend, Ava, told me the other day when my glasses were sitting atop my head, "Put on your eyes," she said. Put your eyes on---what a thought. I don't know, though. I'm not so willing to risk---and change. But, if I did decide to see things differently, how could the same things look different? Am I willing? I think Ava was telling me something I needed to hear, "Put on my eyes." My new eyes.
And, stop my whining.
Put your eyes see the same 'ole things in a whole new way.
No grining.

Thursday, March 18, 2010

Hooters...The Magazine

It's true. Taylor and I can go into a restaurant and I can order him the kid's meal and a martini. He's 25. He has a sort of driver's license -looking card that proves it. One big thing that really threw me (and my step husband) about four years ago, was that we learned that we needed to legally become Taylor's guardians. We are (and were back then) his parents. His real parents---biological and acting parents. the real deal parents. No kidding parents. I'm not trying to be flippant here or disrespectful, but who else would want to be his guardian? We had to retain a lawyer, complete all these forms and then go before a judge to make it legal so that we could become Taylor's legal guardians. It was weird....and stressful. Looking back, in some ways, though, it was sort of like having our vows redone. What is that called when people re-do their vows to one another? Oh,yeah, renewing. We renewed our vows to Taylor. It's true. (I love this concept of renewing our vows to our children.) We sat around a big mahogany table with our lawyers and the judge. It was tape recorded. I don't know why, but I cried all the way through it. I remember a bailiff of some sort trying his best to sit inconspicuously over in the corner (reading "Field and Stream" Magazine) as we renewed our vows to our retarded son. He was sort of like our best man, I guess. But, I wonder why we needed a bailiff. Were things going to get ugly? We were there by choice. The judge asked, "Do you promise to love and hold this person's life in his best interest for as long as he is in your custody?" Something like that....only more serious and evidently quite poignant because I was sobbing. Just like brides are when they can't get their words out---only I was a mother holding on to my heart.
Was it the realization that finally on paper...on a piece of ivory water-marked paper, there were words that stated very bluntly, "This is an incapacitated adult male. You are now his legal guardian." The paper did not state that I was his mother. That might have carried far too much weight. No, it said that we would be his legal guardians. How do you go from being the mama and the daddy to being a court documented legal custodian? Being a mama seems so much much more much more necessary and long lasting and......sacred.
Whew...that was a lot of words you just read. Dense and intense. That's what that experience was though---dense and intense.
So now we have to keep copies of that legal document with us most of the at the doctor or dentist or bank. It's a place I don't know how to be in so well. Here is a full grown man-bodied person carrying around "Lady and the Tramp" movies.
He has a fully mature body (work with me here) but the mind of a five year old.
However.....however....Taylor loves bosoms. (That would be my mother's word, so I'll use it.) This is not something we taught him. It's his own natural testosterone kicking in. As his very own doctor told me, "He's retarded, not blind." Hence the bosom thing. (Please don't hold back your laughter. It's ok. If you'll be "in this" with me, you can laugh legally.) So, here's my big huge spiritual question: When we go to the pediatric dentist, what "toy" should he be given at the end of the exam?
That may not sound so much like a spiritual question, so let me explain.
How do we honor Taylor for who he is and allow him to live as fully as he can being who he is? I bet I've lost you.
Let me just cut to the chase and tell you that his brother bought Taylor some 'Hooters' magazines. I take those magazines to the (pediatric) dentist and after Taylor's had his work done, instead of giving him a balloon, I give him the magazine. "The Sports Illustrated" swim suit edition works just as well. I draw the line at stuff more risque than that. I don't know how I would ever in a million years be able to explain all of those other body parts to him. Bosoms are our outer limit and we even keep those semi-oovered.
Like your life and my life, we live so much in contradictions and paradoxes and between juxtapositions that just about knock us off our feet. Life is both so fragile and brutal in the same breath. We're strong in our broken places. The cracks are where the light comes through. All of that is true.
So, renew your vows to those whom you love---fully capable or incapacitated, no matter.
My real other big fat spiritual revelation is that I think I know what a mama and a legal guardian do: We shall feed our flocks like a shepherd; and we shall gather the lambs with our arms, and carry them in our bosoms.
Life lessons everywhere we look. Are you with me?

Wednesday, March 17, 2010

Bless You

I don't know what public etiquette is for saying, "Bless You" when somebody sneezes in public. Do you have to know them or be related to them? I swear it, there are some people who bless a sneeze all the way across five aisles at Publix . Or, like if you're sitting in the doctor's stilted airless waiting room, and another (potential) patient sneezes, well, that "Bless You" seems sort of sanctioned and appropriate. Even as gregarious as I appear to be, I just gotta tell you that I have refrained from public "Bless You"s for quite some time. I don't know, it just felt like a boundary issue to me. I don't know these sneeze-ers in any way; what is it that I'm blessing anyway?
Taylor, no matter what kind of pain he's in or what room he is in our house, if anybody sneezes, he is the first one to exclaim, "Bless you.' And he keeps saying it over and over again until one of us (best the sneezer/sneezee?) hollers out, "Thank you, Taylor." Somehow his "Bless You"s are different. It's kind of hard to explain. His "Bless You" just seems sincere.
A couple of years ago I was having a really hard time---with life, with people, with bits of a broken heart. I was wallowing in my wounded-ness. Basically I was having an all-night pity party--without the french onion dip. One of my first instincts any time I feel bad, is to see if there's a pill I can take to make the pain go away. Yes, I admit it. Immediate gratification and "poof" healing is a real draw for me. However, I also know that the only way out----is through. So there you have it. (What??) Anyway, back to feeling depressed and hurt.....My phenomenal family doctor, Dr. Farris, paid close attention as I wailed but basically did not fall for any of my nonsense. Here was his medical remedy (and I'm not kidding here.) He told me to silently say a blessing for every single person I met for the next ten days. Whether sitting at a red light, standing behind a stranger at K-Mart, passing a jogger on the street, or sitting next to a co-worker in a meeting--He told me to bless them---completely silently and inconspicuously , offer this prayer: "May you find joy. May you find peace. May you know love." It was truly one of those proverbial, "Say ten blessings and call me in the morning" type of medicines.
OK, I know you're all smart readers and already know the end and moral of this story. It worked. And works. Past tense and present tense. Blessing others silently and prayerfully spurs us on to first look inward and then look outward --at ourselves and then at our fellow people---whomever they are. I'll save you a doctor's visit. Try it. It may be a little like that children song says, "Let there be peace on earth and let it begin with me."
So, today, while in your car or at the store or while walking down your hall at work, smile, nod and bless every person you see. Silently. Prayerfully.
May you find joy. May you find peace. May you know love.
I wonder how many people will be blessing you as well. Won't that feel good?
Before you go out into the world, just start with yourself. "May I find joy, May I find peace. May I know love." Ok, you're ready. Ohhhhhh. I'm feeling a group Gesundheit coming on. Bless us. Bless us all.

Monday, March 15, 2010

Food.....a decoy?

Well anyway, another funny woman, Erma Bombeck, wrote that she could always tell when she started a new diet. On that day, she would ransack her sofa, lifting up each cushion to find those M&M peanuts she knew she had long ago dropped. Food. Hmmm. Is it what we eat or how much time we spend denying ourselves donuts?
I'll circle back around to the word nourishment, but you'll have to wait a minute. Because as we know, (Spoiler Alert!) it's real nourishment that we seek.
I am from a huge family. That's three meals a day multiplied times all of those years. That means my mother had to supplement with fillers like rice and spaghetti and grits and potatoes. (Carbs anyone?) It was simply too costly to go the route of braised asparagus when feeding eight children. Sometimes, for a treat, we got salads. (Salad: Mostly 1000 Island dressing with lots of croutons. Salad.) When my boys were little and with me in Bell's Grocery Store, Cole would say, "Mama, please may we get some grapes and Kiwi?" My answer, "No, that costs too much. Go find those cheese puffs." (I am so sorry, Cole. Please forgive me. I'll FED EX you some fruit tonight.)
Taylor was in elementary school from the time he was 4 until he was 14.(He's...well, you know what he is.) Taylor had a phenomenal, incredible, gifted, beautiful teacher, Mary Sgarlato. Each day we sent snacks with our kids. One day a carefully worded note came home from Ms. Sgarlato that read, "Maybe you could vary Taylor's snacks some to include a more healthy variety of foods." What??? What on earth was wrong with Cheetos and slices of Velveeta? But, I listened to her and made changes. The very next day I sent Doritos and miniature marshmallows. (Kidding!) I can't remember what I sent after that, but I'm guessing I gave sliced apples a whirl for a week or two. Old habits are hard to break.
What I know is this: Eating (Food) is so often not about nourishing our bodies. We trick ourselves into thinking that the sugary icing or the hot buttered roll is going to fill up that hollow place in us---that hollow place we have not even identified....out loud. If our bodies are true containers that offer a home to our souls and our spirits, what is it that our containers need that feeds us?
What is real nourishment anyway? What nourishes your soul? What nourishes you so much that you forget to eat lunch or keep going right through dinner? My guess is that it might have to do with being engaged---being in contact--being connected with yourself and with others. My sister told me yesterday that for her, emotional pain is being estranged from herself and from others. Yes, I would say that could cause a hole in our hearts for sure.
How do we fill in and fill up that hole---bridge that gap----circle back together---back to our holy selves? So,here's my big fat spiritual question:
How do we make the hollow ......hallowed?
Real nourishment calls for us to reach out, to connect, to notice one another, to acknowledge, affirm and touch one another.
News flash: Krispy Kremes are a decoy for real love--for nourishment. It's true.
I'm sure I'll probably crave donuts for as long as I live. That's ok. What I want to crave along with those, however, is real, complete, nourishing food....for my soul.

And, when you find those M&M's under your sofa cushions,
keep them.
But send us all some love.
Our souls are hungry.
(Ok, on second thought, and maybe just send me a few of those M&Ms--in an unmarked box.)

Airport Security: Rated R

Isn't this a family-oriented blog? I need to give one of those "Mature Audience" warnings at this point about this post. This posting is meant for mature audiences. If there are young children in the room, ask them to leave before you continue reading.
Taylor and I have had the pleasure of flying in and out of Molene By-God, Illinois many times. Molene is the most direct route to Iowa University Hospital and our holy neurosurgeon doctor guru. Let me just tell you that the airport security folks in Molene take their jobs very very seriously. The screeners might even be elected positions there. It's like Atlanta airport security on steroids. Getting through security in Molene with Taylor almost requires a passport. Only a video of our screenings would convince you of the absurdity of it all.
Taylor has little titanium rods in his neck. He has had two major surgeries on those two very high vertebrae---the risky kind---well, only if you value being able to move your limbs before and after surgery. Ok, enough of that medical background. Ho Hum. Just get the picture in your mind: Incapacitated Adult Down Syndrome Male (I have the legal documents that state this), neck brace, physical pain, MRIs/X-rays in hand, airport wheel chair requested.. In Molene, for whatever reason, they always separated Taylor and me prior to going through the x-ray hall of fame. Remember, Taylor can't talk. When I went over to explain to him that he would sitting on the other side of the plexiglass from me (his mother and legal guardian), the security officer informed me, "Ma'am, if you touch him, we will have to isolate you. You are not allowed to approach him in any way." I guess they did not want me to remove the marijuana or meth I had stuffed into his pockets. But the fun was only about to begin.
Here's "Dwayne" the career ladder security officer-screener trying his darndest to engage Taylor in the airport's version of Simon Sez.

Dwayne: "Mr, Clausby, we are going to need for you to put your hands on top of your head."
Taylor: (Stage Direction): Does not move. Does not show any sign of recognition that any direction had been given.
Dwayne: "Mr. Clausby, put your right hand on top of your head."

I, with my nose pressed against the plexiglass, am thinking: Taylor does not know his right from his left. He has been in physical therapy for two years trying to get his hands on top of his head. If you can get him to do any of this, Dwayne, you're hired. You can give up this airport job and become a physical therapist.

Dwayne (On his walkie-talkie): "Darla, I'm going to need back up here. Mr. Clausby is not cooperating. We're going to need to do a pat-down and search."
Me: First of all, get his name right. It's only two syllables and you have not read it right yet. America, feeling safer yet? Mr. Clausby might be a terrorist.
Dwayne: "Mr. Clausby, we're going to need to pat you down. Spread your legs."
Taylor: (Stage notes) Sensing that someone is about to touch his pumice, tells Dwayne, "Not nice. Go nice. Mine. Not yours." (Translation: Nobody was going to touch Taylor's good-touch/bad touch bathing suit area. Especially Dwayne with his blue latex gloves. Sorry, Dwayne. No can do.)

Apart from being totally appalled, infuriated and ballistic, I am also a bit amused that neither Dwayne nor Darla are able to (1) Find any drugs on Taylor. I guess they concluded that he is not a "mule" (drug runner.) (2) Nor is Taylor any good at playing Simon Sez. Taylor never put his left foot in and shook it all about. Not even once. Following two or more directions has been a goal in his IEP since he was two. He was not going to suddenly "get it" because he was in an airport.
Relenting and coming to terms that Taylor was not able to "Do the Hokey Pokey," we were reunited after the truncated strip search. But! There was still the luggage! Taylor's bag was emptied and itemized. On the advice of my Physician Assistant sister, I had packed my expensive shampoos in little < 3 oz. specimen containers. This was the funniest part (and the R rated part). Darla and Dwayne, took one look at the three medicine specimen containers---full of white, pearly conditioners and assumed that Taylor had provided "specimens" for the doctor. Tense, furtive eye-contact between them told me that they were stumped. The only words Dwayne spoke to me were, "The doctor ordered these specimens?" D&D, homeland security protectors assumed that the contents in these little jars were.....well, uh.....semen. (Oh, come on! You gotta laugh!) But, you can believe they were not about to have that conversation with me---and certainly not with Mr.Can't-Even-Play-Airport-Simon-Sez-Drug-Smuggler Tyler Clausby.

By the time they finished with us, D&D even allowed Taylor to take a huge bottle of orange juice through security. Because I didn't want to pay $3.89 on the "other side," I told D&D that Taylor (Tyler) was diabetic. They didn't even flinch. Diabetic and uncooperative. Maybe they radioed ahead to Atlanta.
"Let him pass!" Dwayne said. "Let him pass on through!"
Homeland Security heard from me. Believe it.
Everybody sing: "And you do the Hokey Pokey and you turn yourself around....that's what it'a all about."

Sunday, March 14, 2010

Life's Race to Win.....What?

Today I was out in the yard playing ball with Taylor. He's 25. I'm 56 and we're outside in the neighbor's yard with a big red bat and white plastic ball. (What were ya'll doing, BTW? See?) Taylor can hit a lot better than I can pitch. It just swept over me: This is it. This is my life. It's Saturday and this is what we're doing and what we'll do again tomorrow. My mind was racing 90 to nothing about stuff I thought I needed to be doing, but not Taylor. For him, what we were doing was all that there was to be doing.
It is so weird to live with an "adult" person who does not capitulate to the pressures and whims of the outer world. For Taylor, none of the regular 'ole expectations and external measurements cause him to lose any sleep at night. I can't get him to buy into all of my anxiety about how tough things are. Sometimes I feel like I am split right down the middle of my body---right down the middle of my life. And, interestingly enough, Taylor's way of seeing the world is looking better and better.
For me, having grown up around well educated people, who cared about money, looks, belonging, fitting in, achieving, being successful, and "making something" of one's life---well, that's a lot of balls in the air at once, isn't it? But right next to me all day every day---right at my elbow is this precious little guy who does not give a rat's a** if you or I have a degree from Harvard or Podunk--or no degree at all. He does not care one wit if you weigh 400 pounds or 63 pounds. He would not know a BMW from a old clunker. Color doesn't matter, money doesn't matter, being a somebody does not matter. He will hold your hand and gently rub your face even if you are in the midst of a nasty divorce or are a homosexual who has had 12 abortions. Taylor just does not judge. He does not get tangled up with who or what has "value," and he does not indulge me when I do. It's really perplexing--and maddening. How can somebody not be caught up in this rat race? What is life about if you're not out there trying out-smart, out-spend, out-do, out-look all those other people? What if "the rules" just do not apply? And don't go acting like you don't know what the rules are. We all know them. We might hate them, but we still know them.
Here's my big fat spiritual question of the day: What if we're just supposed to be playing ball on Saturdays? Just for fun? I just don't know. Where does that leave us? Like no winners and no losers. All of us the same.
I am feeling the split again.

Here's my best story about all of this. In preparing for the Special Olympics several years ago, Taylor and his class would go to the track and practice running. They'd run relays; they'd get in shape. They would be encouraged and cheered and coached to "win" and do their best. When the big race day came--the big competition-- for which they'd all prepared for weeks, all of Taylor's team wore uniform tee-shirts. It was a real race---you know, The whistle blew. Runners were off! Off to win! Off to beat the others! Off to get those ribbons and prizes! Around the last bend, neck-in-neck the little fellows raced, remembering the coaching and coaxing from days before. Within yards of the finish line, one young competing racer tripped and tumbled to the ground. He had clearly lost his chance in the winner's circle. Taylor, looking back and catching a glimpse of his fallen competitor comrade, did not continue forward towards the finish line. Nope, without even a moment's hesitation, Taylor turned back around, helped his opponent up off the ground and finished the race arm-in-arm. Arms around one another. His fellow man, arm-in-arm. Both crossing the line at once.
What about those rules? Why am I even asking?

Saturday, March 13, 2010

On the Way to My Very Important Life

I always drive the same route when I go to the gym. (I just wanted to say that out loud---go to the gym.) I drive along a gorgeous tree-lined street with huge, beautiful homes placed back off the road. Many times during my drive I pass a woman, walking. She's an Hispanic woman who no doubt has been folding the clothes and cleaning the bathrooms of the people in these huge homes. Dora is making the mile trek up to the bus stop by the shopping center so she can get home to her family after a long day. I know her name is Dora because when I see her, I stop and offer her a ride. In broken English, we "talk" until we get to the open shelter of the city bus stop. It's so weird. I have this huge, big car going no place too important. Dora, on the other hand, needs at least two hours a day get to work and back---on a city bus.
Both of us have our lives. When we meet, we are each "doing our lives" ---hustling and moving forward toward the next thing. Towards the next thing that will make sense or make money or make us ready for tomorrow. She, Dora, is struggling up a sloped hill on a road with no sidewalks--lugging along with her plastic bag of toss-offs from her boss lady. (Yeah, where is her boss and why doesn't she take Dora up to the bus?) I, on the other hand, am going to a facility to exercise---a place that costs money. Money that I guess I don't need in order buy groceries and pay bus fare. Both of us on the way to our lives.
I pass many "Dora's" during my day. Do you? I pass families walking in the rain with no umbrellas. Do I stop? No. I see frail people struggling with grocery carts or heavy groceries. Do I carve out that extra 75 seconds in my day to get out and help them? What about that person ahead of me in line at Kroger who has to put back that can of beans because she is $.79 short? Do I really need one more tube of Revlon Pretty in Pink lipstick if she is going without food? Hmmmm.
I am always so truly grateful when people make allowances for Taylor and me. It just takes us longer to do things. We tend to hold up lines or take more time getting routine tasks done. I can sense the irritability in folks around us at times. There's a lot of foot tapping and eye-rolling as I struggle to get Taylor back into his coat or help him down the flight of stairs. It's like they're saying, "Hurry up. You're wasting my time here. After all, I'm on the way to my life here. My very important life."

And so there's that story about the Jewish man who was left beaten on the side of the road. The priest passed him. The Levite passed him by. Both slowed down and walked a little closer to the man, but then kept walking without helping him at all. And you know how this goes: Along came an "enemy"--yes, a Samaritan--who saw, who stayed, who acted. Do you guess that the Samaritan was also on the way to living his life that day? You guess he needed to be at work or at the gym (in Jericho?)?
I bet he did. My guess is that he, too, had a very full day planned--his life was in full swing---just like ours. But, he stopped. He stopped. He got out of his own life and noticed the life of another---and to top it off, the "other" was somebody he probably didn't like too much. Holy Cow!! That's huge.

My friend Beth, has a son, Matt, at the university here. Matt is handsome, funny, brilliant and has cerebral palsy. He is confined to his motorized ,forever chair, in which he zooms up and around campus in. His attendant helps him dress before Matt makes the sidewalk trek down to campus each day. Last week, caught in a violent rain storm, Matt was motoring back towards home, drenched and unshielded from the deluge. A truck pulled up next to him. Stopped. A stranger--a man--jumped out, took off his own coat, wrapped Matt in that coat and left. No words. Like that other fellow, the Samaritan, he saw, he stayed, he acted. This man, this stranger, was not on his way to his life--no, this man was right smack dab in the middle of living his life.
Taylor reminds me that whatever we're doing at the moment is our life. Our lives are not around the corner waiting to happen. Our lives are right here, right now. What if we miss seeing each other on the road just because we are in such a hurry to be on our way---to what?? If we're always on the way to our very important lives, what is it that we have when we finally arrive there?
So, here's what I wrestle with every single day: Who the heck is my neighbor and do I really have to love him as myself? (Some faces come into my mind's eye and I think, "There just ain't no way I could love that person." Are you with me here?
So, should we stop if it looks like they could use some help?
Who will we be when we arrive in our own lives?
How will we know when we have arrived?
Whom can we tell others that we have met along our way?
On the way to our very important lives, for whom do we stop?
Whom do we love---you know.....on the way?

Friday, March 12, 2010

Queen For A Day

Ok, you gotta be sort of old to remember the very first "Reality TV" show in the early '60s. My family loved Queen for a Day. (It's worth googling if you're young--unbelievable. Makes "Real World" seem tame almost.) But anyway, four women were chosen each day from the studio audience. They appeared on the stage one at a time to tell the TV world about their own financial or emotional hard times. You got it! The contest was to see who had been through the worst stuff--who had had the greatest tragedies and misfortunes. These women contestants poured out their gut-wrenching stories about crippled children, houses that had burned down, torn up washing machines, lost hearing aids. It was like Dial-A-Tragedy--as a TV game show.
After pouring out their hearts and their life stories, the studio audience clapped---yes--to set off an applause meter. The more gripping the story, the higher the meter went. ( Caring for a chronically ill children really set the meter off!) Having elicited the loudest applause, the "winner," draped in a sable-trimmed red velvet robe and a jeweled crown, was escorted to her throne while Pomp and Circumstance (which we called Circumcise) played on. There, on that throne, the newly crowned Queen for a Day was showered with the gifts she had requested in hopes of pulling her life out of the ditch. Come on, folks, you can't make this stuff up. But! Boy were we glued. We even fought over who we wanted to "win." "But Agnes lost her husband, her child has polio and her refrigerator broke down." Everybody clap now. Clap loud!

My friend, Susan, emailed me the other day after one of my posts. She said, "Marianne, God does not do triage. Everything is important to God. No matter how big or small, it matters." Ooops. Maybe I have given the impression that all of you readers need to be taking care of somebody with special needs if your life is going to count. Not true. Not true. When the earthquake hit Haiti last month, that was a full blown tragedy, right? At the exact same time some of you had lost jobs, suffered from a kidney stone, were visiting a son in rehab, were mourning the loss of a wife, were fearing that your marriage might be over. It's not about having the worst thing or the most tragic thing. We are not vying against one another to be "Queen for a Day." That show is over. It's just us now. So, how are we going to care for one another? How are we going to care for ourselves?

My step husband and I used to go to a support group for families with children who had special needs. Of course, in keeping with our very own irreverence for "labels", we called it The Retarded Club. There were all sorts of parents there with all kinds of special kids. We all showed up ready to win the title of Queen for a Day (that was a true confession) because we all thought our lives were harder than the guy's sitting next to us. Oh Lord. Why do we do this sort of thing? Actually we eventually just stopped going because it became clear to us that we didn't have any "street cred" in the group because Taylor only had Down Syndrome. No walker, no tubes, no ventilator. No sable-trimmed robes for us. Not hardly.
Here's what I know: Life gives us all different stuff. Some of you did seem to get the "easy" package. (I bet you'd argue with me, though.) I got Plan B, option #2. What matters is how we live this life. What do we do with what we have? How do we show up in this world----for ourselves and for one another? It's not what happens to us, but it's how we react that is the critical ingredient. Would you agree with that? My mother used to always say that thing about lemons and making lemonade. When she started that, I knew something bad had just happened. We were going to have to pull out the sugar and stir--and stir.

But let's go back to doing triage. We can each do our very own form of triage. Just ask yourself, "Is this important? Am I really bleeding? What's the worst thing that can happen if this is true about my life?" Am I willing to do what it takes to get out of this ditch?
Ask one of us for help, why don't you?
We've got a robe for you to wear.
We've got gifts to share.
No applause meter needed.
We'll all come to the throne with you. Pull up lots of chairs.