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, competition...winners...losers. 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?

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?

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.

Waiting to Talk

I know you know people like this. They ask you a question. It may even appear as if they are actually interested in hearing your response. But before you can answer, they've answered the question themselves or filled in your blank with information pertaining only to them. It's a bit like being hit with a bolo-paddle. Bring the ball to you, hit it, knock it out again. Just when you think it's your turn to answer...Bam! I have a friend like that. Here's how the conversation goes:
Her: How have you been? I've missed you. Tell me everything!
Me: Well,
Her: We have been so busy. I thought I had mono. Didn't you have that once?
Me: Yeah,
Her: Mine was the worse case ever. Has Taylor been sick? What's he up to?
Me: Today he,
Her: I have been doing more stuff than ever recently. I'm so glad everybody is doing well at your house.

I bet you can name two or three people just like that. You couldn't call that listening, could you? What's interesting is that later that friend may report, "I had a wonderful conversation with Marianne today." No, for so many of us, listening is simply---and rather crudely, "Waiting to talk." It's like, would you please finish what you are going to say so I can jump in and talk about myself some more? Oh, that sounds kind of harsh now that I've said it. But somehow it rings true.
There's a thing we teach new teachers when it comes to asking questions. It's called Wait Time. Teachers ask students a question and then wait. A researcher, Mary Budd Rowe, found that if we wait in complete silence for 3-5 seconds after asking a question, that many positive things happened to students' and teachers' behaviors and attitudes. Whoa! Wow! Something that is free and yet that produces profound results. Can we, could we, should we apply that wait time to our own very real lives? I mean, the research has already been done. Now all we have to do is get on with it. Why is that so hard?

Taylor doesn't talk much at all. If asked a question, his requirement for wait time is much greater than normal. I often hear people ask him a question. Complete silence follows most often. It can be awkward. I know that Taylor knows the answer, but there is no look from him that indicates, "I'm in the thinking mode here." So, the requisite 3-5 seconds of silence gets interrupted and the space gets filled in with conjectures and words that do not really belong to him. I am not criticising anybody here. It takes a whole bunch of patience. Even when I know he's got an answer forthcoming, my own need to fill in the gap bulldozes in and silences him--again. The wait time is left in shreds.
I love to have my hair washed and I loved to be listened to. Both of those actions by others seem so luxurious and so caring.(I just threw the hair washing part in in case we're ever partners on The Newlywed Game on TV.) Knowing that we have not only been listened to----but have been heard is simply one of the greatest gifts we can give to one another. It's free. But it is so rare. To listen, to wait, to be still and allow others to have the space, the air, the moment, requires that we step back and just "be." Gosh, this is so hard. It's hard because we're all so needy and our lives seem so urgent---maybe even desperate. But, here's a place to start. Don't just wait to talk. Wait to listen. Or, just wait. Wait those few seconds for the treasure in the other's answer. Time to wait. Count slowly to five. Quiet. Listen.
There is something they want to tell us---for us to know.
Wait time.
Now, tell us. What's on your heart?
1...2....3....4....5....We'll wait for you.
We want to hear.

What's In Your Cart?

There are three words that some of you, my readers, will never hear:

Attention K-Mart Shoppers!

You've never been there, never plan to. But me? I spend most of my shopping career in stores with carts. When I go to Target, in one orange buggy, I will have put my new Easter dress, a bag of Cheetos, some 3 way bulbs and a six pack of Diet Coke--- right on top of each other. Oh, yeah, and then I might need to pick up a new bra and some motor oil. Into the cart they go, plopped on top of the Cheetos. When my son, Cole, was about ten he asked me, "Mom, can we ever go shopping in a store where everything you buy doesn't go into one orange basket? Say more, my son. "Well, some of my friends' moms like go to a store that sells just shoes. In fact, mom, some stores don't even have orange carts for you to push around while you shop. You just go there only to buy clothes. There are other stores just for appliances. They are not even the same store."
Hmmmm. Stores in America are like that? Where?
I was about to tell you that I have lived my life where everything is piled into the same cart. I have pretended that I had no strict divisions that separated my life into distinct parts. As a public school teacher, I went to the homes of students, I got to know their families, their churches and their neighborhoods. My job was integrated into my real life. My family, my neighbors, my education, my friends---all are sort of piled in together in one basket. Sometimes anyway. But only at times when I'm not asked to make huge sacrifices and you know, give too much of myself. Now that I am looking at it, I may be just as divided as....as....as... you.
I push around one life cart when I visit Jane whose kids go to private schools; I listen to her rant on about quality education. When I am with my "religious" friends, I try harder not to cuss and am ready to impress them with my recitation of the Books of the Old Testament in order. When asked if I can burp the entire Apostles Creed, I decline. When I go to the gym, I pretend that my spandex is just de rigueur for working out. In visiting children in the projects, I hide my Merrill Lynch statement under the junk on the front seat of my car so as to appear poor--like them. Same life. Different baskets. In fact, I push around a whole bunch of different carts and don't really know what part of me is in any of them.
What I love about Taylor is that he really does live the whole of his life out of one incredibly honest basket. What he pulls from it and then adds to it, is always the same no matter what he is doing or who he is with. Even more rare, he only puts "stuff" in his cart that he needs. He has no temptation or craving to fill his basket to heal an emptiness inside of himself. There is not even one new bedspread or new Wii game, or trendy pair of jeans out there that he ever has to have. (Can we each hear ourselves saying, "I just have to buy those shoes or car or dress or purse or TV or, or, or, or, or."?) We fill our basket and carts and lives with stuff and still wonder why we are not content/fulfilled/happy.
What if we took a good look at what's in our life cart? If we have just one cart that has our name on it, what would go into it? What would you label as "Absolute Must-Haves" to make your life whole? A friend told me just yesterday, "Get rid of anything that isn't useful, joyful or beautiful."
From being around Taylor, I'll tell you what's on his cart list: Kindness, Gentleness, Honesty, Compassion, Love and humility. Taylor keeps all of his stuff in one cart. He has all he needs there. What are you keeping in yours? What would you add? It's perfectly safe to load loving kindness right smack dab on top of patience---I mean, if they happen to be on your list.
Oh yeah, keep the Cheetos.
They're a given. Useful.

Cover Ups

I have cousins in Tallahassee whom I rarely see anymore. Funny how that happens. Close as children, we've grown apart as life happens and divides us. These three--siblings--were probably the first latch-key children I had ever known personally. The oldest, Kim, although a very mature 12 year old, was asked to watch over her 7 and 8 year old brothers most afternoons. Left to their own devices and creative play, the three of them decided, one afternoon, to build a small fire in their front yard. (Are you already thinking, "Bad idea"?) Yes, you're right. Their fun little experiment set the whole lawn on fire. It burned up the entire front yard. I've lost the bit about the fire department, if there even was one. Nobody was hurt, but my three cousins knew they would be in big huge horrible trouble with their parents when they got home. So what did they do? Kim said, "We just took every single blanket and sheet off of every bed in the house and we completely covered up the front yard. We hid the burnt yard by making a patch-work quilt of sorts, that covered up the evidence." And, then she said they just casually sat there whistling and reading magazines with the earnest hope that neither parent would notice the scorched front yard. Completely covered up with blankets. All over the front yard. No red flags there. No dead-give aways. Everything copacetic. All things normal. Who would ever even know?
Gosh, I am thinking how often we try to cover up stuff in our own lives. We cover up our bodies, our feelings, or dreams, our fears, our doubts. Instead of standing there in full view right on top of our own scorched earth, we, too, bring in blankets to camouflage what it is that is really going on in our lives. Maybe we rationalize it by telling ourselves that nobody really and truly wants to know. Maybe we're embarrassed that we are not living up to some standard that we've condemned ourselves to meet. What is it that we don't want others to know about us?
My friend, Carol, tells her story about shopping at Lane Bryant. (For you skinny people, that's a store that sells clothes for fuller figured women. Yes, sizes do go above size 8--and they're not called "Omar the Tentmaker" stuff, BTW.) Carol told me that, while shopping there, if she sees co-worker or neighbor, she says she hides behind the clothes rack. When asked why she hides, Carol set me straight, "Why, obviously I don't want anybody to know I'm fat." I laughed. You are laughing. Pretty obvious, right? But hang on.
I bet we've all got junk like that---stuff we think we're hiding, covering up, pretending is not part of us---but everybody seems to know. No sh**, Sherlock!
Some of us are straddling blankets on burnt grass hoping that nobody calls us out. We attempt to hide things about ourselves that secretly shame us. It's requires relentless effort. But,here's what I know: Every aspect of ourselves that we've denied, every thought and feeling that we've told ourselves is unacceptable and wrong, eventually shows up in our lives--so we can look at them. So we can become whole. So we can love ourselves---and in turn love others. (Notice I have not even told you yet that this is what I've learned from Taylor. But, this is what I've learned from Taylor. Accepting our weaknesses and our strengths makes us whole.)
I'm heading upstairs right now to put my blankets back on the beds where they belong. And, I'm going to stop by that closet that has my bathing suit cover up in it. I'm going to take that cover up out in the front yard and set it on fire.
Join me. Uncover yourself.
Come out from behind that rack.
Will you stand in the light with me?

Murray Has A Last Name.

Oh my goodness. I am ashamed to write what I am about to write. I wish there was a way to portray myself in a better light, but there just isn't. I am wriggling and squirming with my own sense of, "I wish I had been better." So here it is.
There was a boy named Murray. He had a last name. Murray B. If most of my brothers or sisters are reading this today, they will know exactly of whom I speak. Murray was our age. He lived with his mother in a run-down, white, clapboard house on the street adjacent to our downtown church. Murray had acne. His hair was dirty. His clothes didn't match and they were always too small for him. He went to a different elementary school because their rental house was not anywhere near our neighborhood. I am not sure at all how my father found him or knew about him, but somehow Murray B. made his way into our lives. And boy was I pi*****ed. The gall of my father to make us go by Murray's house, go inside (gross!) and tell him it was time to go to church. I mean, he was not one of us. We knew it. He knew it. And, to make matters worse, my parents expected us to be nice to him. They carried on a normal conversation with him just like he was one of our "regular" friends. But he wasn't. He was poor. His mama was poor. They had torn up linoleum on their floor and I know there wasn't any heat. Why didn't he just go to his own church? True, that of all of us, he lived closer to the fellowship hall than anybody in our church. But still!! Wasn't there a church for people like him?
I promise you that we begged daddy not to make us take Murray to church. "Please don't make me sit by him. Don't let him ride in our car. He smells. He's rowdy. He can't even read good. Nobody even likes him at church. Ok, he can come, but we're not talking to him."
Deaf ears is what my father wore back then. I'm not sure there ever was an explanation, a sermon, a moral, a lesson. There was no, "But this is a child of God like each one of you. We should reach out to the poor. He needs us. We are doing the right thing." Nope. No explanation. Our ugly blue station wagon just pulled up in Murray's yard most Sundays and one of us was expected to go in and see if he had a clean shirt to wear to church. To our church. It's so hard to be benevolent when you're a "tween." Why did my parents insist on trying to bring Murray into the picture? And, why church? Why not just take him to the library or something? What on earth were they thinking?
Where do we learn in life who is "acceptable" to love? From whom do we take our cues that this person is ok to sit by, but it's best to shun the other one? (Shun slyly, of course so nobody sees.) I don't know about you, but I have pretty fixed opinions and habits when it comes to who I really and truly want to include in my life. Yeah, sure, I may volunteer at the soup kitchen every now and then, but then I get in my car and drive back to my safe little neighborhood. I drive away from the Murrays in life. I drive away from torn up linoleum floors and houses that are not heated. I had just rather pretend that all of those Murrays do not exist. OK, I am putting myself out there. I bet you $100 that I am not alone in this. How many Murrays do you know? And, why is it so hard for us to love Murray?
Stretching has always been hard for me. I can't even touch my toes. It's easy to pull a hamstring or tear a ligament if stretching isn't done slowly and gradually. Right?
What if.....what if....what if... we each began to stretch just a little bit more each day to include the Murrays....and the Taylors in our lives? If we do five deep knee bends today, should we do seven tomorrow? Isn't that how we get back in shape after we've atrophied the parts of ourselves we have ignored for years?
Looking back, I know that Murray had a mama who loved him. Murray had a mama who must have cried when that man (and his "loving" kids) came and picked up her son and included him in an experience that maybe she couldn't. I really never thought about Murray's mama until I had a son who not many people want to ride with or sit with or talk to.
You see, I'm pretty in tune with shunning slying. I'm in tune with it because I do it myself. I think I'm ready to stretch---and reach---reach out.
Each one....reach one.
How hard can that be? For starters, I mean. Then maybe, without pulling anything, each one....reach two. You don't really have to explain it to anybody.
Just pull your car up into their yard---take it from there.

A Soft Place to Fall

I have sleep walked most of my life. I mean, real sleep walking....not just
"she sleep walks through life" type thing. I started sleep walking in the 3rd grade when that mean 'ole teacher told me I couldn't read good (or well.) By sleep walking, I mean that I actually got up and left places sound asleep, convincing others that I was awake. Many of my childhood friends could not wait for me to go to sleep just to see what I'd be up to within the next few hours.
Our family has been going to the beach in Carrabelle, Florida since I was five. Sometimes we spent the whole hot summer there. During many of those summer nights, I slept walked. Now this is true. My siblings will vouch for this (and more!) I swear it. One night, about 2:00 am, I climbed out of my window and out onto the roof of our two-story old beach house. In my dream-state, I walked around completing whatever unconscious business had eluded me in the daylight. Eventually you know, a sleep walker begins to wake and "come to." I was in that sort of dazed state when I heard my mama say, "Daddy, I think Marianne is out on the roof sleep walking." I know they were exhausted parents. It was at least 108 degrees, no air, too many bugs and kids. In some sort of distracted and groggy voice, I could hear my father reply, "Oh, gosh, I hope she doesn't fall off the roof and hurt the water heater. We just had that fixed last week." Yes, you read that right and I heard that right: "I hope she doesn't fall down two stories and hurt the water heater." I'm not sure if I crawled back through the window because I was tired or rejected. Whichever, I knew that I would hear about it in the morning.
When is it that we are supposed to spring out of our beds and out of our own lives to take care of children....again? Who is the boundary-drawer of that thin line between allowing our kids to grow up and be their own people without our constantly layering them up with all of our stuff---expectations, fears, dreams. My parents had witnessed my sleep walking a hundred times before. They knew that about me. That's what I did at night. It was part of who I was. At what point were they required to get up, stay up and help me take care of my life? When are parents supposed to intervene? (Anybody out there ever ask yourself this same question?)
We would probably all agree that we want to keep our loved ones safe. But there was a bigger issue that night at the beach. (They needed to keep the water heater safe-er.) Actually, what they knew was that I would find my own way off of that roof, back inside the window and safely to my own bed. I don't begrudge them this; they knew I was a skilled sleep-walker. I had never fallen before. They trusted that I would find my way....back.
(Side note: Being without hot water would have gotten me killed the next day anyway. My brothers and sisters would have finished me off.)
It is so hard to know what part of Taylor is just Taylor and what part of him is left up to me. Even with his profound limitations, I know that his own sweet soul has a journey and a purpose all his own. It's his gig. This life is his life, not just his life attached to me. He has his own path, his own needs, his own special job to do on this earth. Since I've already admitted to being God's wife, I must remind you how inclined I am to control his learning and experiences. I want him to grow and be who he is, but sometimes I probably work too hard to keep him from falling. I'm asking you, is it enough to offer those we love simply a soft place to fall? And, how do we know where that fine line begins and ends? Just asking.
I am so glad that my parents did not get up out of bed the night I walked around on the roof at the beach. I may have fallen and broken my leg or, G_d forbid, fallen on the water heater. But it would have been my fall, my leg, my own path.
This is a hard call. We all have them---hard calls. Is that our best bet---giving each other a safe and soft place to fall? I'm thinking yes.

A Shut-In. It's Official.

I used to feel so sorry for families who had to eat at Shoney's on Thanksgiving. It just seemed so pitiful. Heck, now nothing would delight me more. Likewise, as a young girl, when our church bulletin used to list the "Shut-Ins", a shudder went through my body. Nothing could be worse than being a Shut-In (and having your name in the bulletin to boot!) But, guess what? It's official. I'm a Shut-In. I no longer go to church on Sundays. Even though I received my Sunday School pin when I was 16 for never having missed a Sunday (another blog) now I have joined the official shut-in group; I listen to church on the radio, with Taylor by my side. (It's hard to take Taylor anywhere much because his pain fluctuates so.) Yep. Every Sunday, either in my car or with my handy little radio, I sing along with all of the hymns and anthems. The Methodist Church on the radio has a great choir (directed by Stephen) and a minister with a thought-full message. After every hymn, Taylor says, "Good job, Stephen." ("My" church is not "radioized.")I just sit there with my little shut-in self and sing. I guess maybe I'm thinking that around noon, somebody will then be along with Meals-on-Wheels. Fried Chicken, please, if you're taking orders.
Growing up, almost every Sunday, my father would drag five of his eight children to visit a for-real shut-in from our church. Dr. Shedd, a brilliant and accomplished man, had had a stroke that left him paralyzed completely on his left side. You know how children are: we hated seeing old people in hospital beds, in their matching pajamas, with partial paralysis. But daddy, hauled us (clobbering, hollering, fussing, blabbering) once a week to sing for Dr. Shedd. There, this gallant and valiant man would be cleanly shaven, all fixed up in fresh pajamas, so expectant for these renegade children to enter his home--his sanctuary. Pulling himself up on the bar above his bed, his nod and partial smile gave us our cue. My tone-deaf father lead his five little chorister children in perfect harmony through beautiful carols. No matter what time of year, we always sang, Silent Night, Holy Night.
Always always always, into about the third carol, tears would begin to stream down Dr. Shedd's face. We could see the subtle movement of his lips as he struggled to join us in our song. Still the tears streamed. He cried. We sang. His heart was touched. A family had come in to his home and acknowledged that he mattered---that he counted---that he was still part of life. He knew. Our own young hearts had not known enough life experience to acknowledge the power of what was being shared......yet.
Wrestling, tripping, pulling and punching, back to the car, The Singing "Herdmans" (Best Christmas Pagent Ever) settled into a sort of unusual holy silence all the way home. Even against our protests, we knew that something important in life had just happened. It would not until years later that any of us understood how critically important it was to be forced to get out our own lives and enter in the lives of others ---on their own turf, on their terms, at their level, whatever it may be.
Actually, you see, it's not about being a shut-in after all that makes life hard. It's being Shut-Out/Shut Off from the world we know, from the world we need ---that freezes us in a desolate place. We tend to avoid people and situations that make us squirm a bit. Each of us allows our very own form of paralysis to keep us from reaching out, from stepping out of our own comfort zones and into the very real lives of others. What if, though, with all people whom we meet, we learned to speak in ways they understood, to hold on with them as we all steady ourselves and not turn away when the heart gives way to tears?
Unlike me, Taylor is not a shut-in at all. But, shut-off? Probably. It's really not so bad being a shut-in, but being shut-out? No thank you. (Good readers, raise your hand if you like to be shut-out? Ya'll see any hands waving?)
Shoney's has shut-down, so I guess we'll be dining in for Thanksgiving this year. However, Taylor really loves Picadilly. But, I gotta tell you, that place really does seem like it's for Shut-Ins. Guess I'll be going there next. I hope that never makes it to any church bulletin. And could we keep this ---our going to Picadilly just between us? I don't want that to get around.

Miracles FAXED

Miracle Grow. Miracle Whip. Miracle Cream. Miracle bras. Gosh, I've tried them all and none of them seems to have worked. Are you like me? Do you want "poof", abracadabra, zip-zap changes in your life? Miracles. Now there's a provocative word. There are those of you who have witnessed miracles in your own lives---both physical and spiritual--and who believe wholeheartedly that complete transformation can happen. What is that? Is that faith? And then there are people like me who also have faith, but secretly and silently just can not buy in to that whole miracle stuff. Well, I used to couldn't. (Is that sentence even correct?) Ok, I used to didn't. That's better.
About five days after Taylor was born, a group of friends (not close friends, but friends none-the-less) called and asked us if they could come over to our house and pray over Taylor. Believe or not, I never turn down a good prayer, so I was anxious to say, "Of course." Not too long into out plan-making conversation, however, this friend told me that they were coming over to pray for Taylor's complete healing and restoration. Breathe. (I'm telling this to myself.) The Holy Huddlers were going to pray that Taylor's "genetic condition" would be "made right."
Let me just say that besides feeling like I was being kicked in the gut, I also began then to assume that I had done something wrong in giving birth to this less than perfect little baby boy. That was confirmed a bit later, when the leader of this powerful prayer group intimated that Taylor was "flawed" because I had sinned.
Well, heck yeah, I had "sinned." Get in line prayer lady friend. Wake up call: I'm human. (So was she; I just don't know if she had come to terms with that yet or not.) Anyway, if her premise was true, how come we all didn't have babies with Down Syndrome? For real. Following her logic did not take rocket science.
You guessed it. They didn't come. I wouldn't let them. Taylor was not healed. He was stuck with that same extra chromosome on his 21st pair---on all of the trillions of cells in his body. So... there was no miracle. Or.....was there?
I just love it how we decide what miracles look like and feel like. We get a firm and clear picture of a miracle in our heads and that image seems to be the only miracle option as far as we're concerned. We tell God (that name again) what to do and spell out the complete design of the miracle we have coming to us. We might as well just FAX it in. 'Cause,gosh, we all have the big picture on our screen savers at all times, don't we? It's got to make you chuckle on some level, doesn't it? Have you heard this too: Wanna make God laugh? Tell him your plans.
Miracles lie in wait--- is what I am thinking. They lie/lay/lain there until we are able to claim them in our very own way, for our very own lives, with our very own personalities and situations. The healing that happened in our house, happened not with Taylor's complete restoration, but with my own. I am going to say this honestly and completely: It was a miracle that I learned to love my child. Are you disappointed? (Were you hoping I had told you that he had thrown down his crutches and walked?) Does a mother's heart opening up completely and utterly after devastation constitute a miracle? Who can we call to check that one out? Who decides the miracle rules anyway?
You know, we sit around and wonder why the Arabs won't love the Jews (miracle?) and yet we won't even pick up the phone and call that relative that we can't stand. (Miracle call?) Do you think it's a miracle when your lonely child finds that one good friend to hang out with? Would it be a miracle if you heard yourself saying five incredibly kind words to a co-worker about whom you gossip? What about the miracle of the husband who has lost his beloved wife or a mother whose daughter was senselessly murdered or whose son was killed in Mosul? Isn't it a miracle that they are still willing to put on their shoes each day---and walk? A family who welcomes home the son they didn't want to be gay or the daughter whose harmful life choices have broken a parent's heart--is that acceptance not a complete miracle? So, here's what miraculous: Allowing our hearts to be stretched beyond what we could ever have imagined. Being radically open to dreams and experiences that were never even on our radar and that do not fit comfortably into our controlled little plan. Loving far beyond our human bounds and capacities---acceptance without walls--living an extraordinarily authentic life---being able to love unconditionally who is or what is in our lives.
Pretty darn miraculous.
How 'bout FAXING that one in?

Back in the Hood

Alright, I am going to jump right in here and say the name Hillary Clinton. (I just lost some readers.) Now I'm going to say that I think she is a brilliant Secretary of State. (There goes half of my family maybe.) If you're still reading, we will all probably agree, that it was through Hillary Clinton that we first became familiar with the phrase, "It takes a village to raise a child." Whew. The pain is over. Who's still with me? And, I bet you're nodding your internal head with the knowing that it does seem to work out better for everyone when the whole village nurtures, invests in, and encourages a child. I knew you would agree with me eventually.
I live in the best neighborhood in the entire world. It is as close to being Mayberry as any place in America. There are about nine families surrounding my house whom I have known for over 30 years. We borrow sugar from one another. We have seen each other in worn bathrobes and ragged sweat pants. We have keys to one another's houses. We have gathered for birthdays, picnics, funerals, and just to drink (coffee---- with a little Baileys Irish Cream). But, mostly, we are a community, a family...a village. And yes, you have guessed it: It has taken this village to help me raise my child/children. My older son is practically perfect, so he was a piece of cake. Taylor, though perfect, has required a bit more upkeep, involvement and interaction. In plain English, it's just been plain hard some days. But my village has never once let me down; their protective eyes have kept vigil over us for the past twenty five years.
My neighbors.....my friends...have "had my back" all of my adult life. They probably had my back behind my back when they knew I needed it most. Each one, each family has welcomed Taylor into their homes---sometimes even when they were not home to welcome him. (He sneaked in.) Taylor washed Gene's new Lexus with motor oil just to surprise her. (Can you speed dial State Farm too?) He has leaf-blown Jane's yard at 6:00 am and knocks on EE's door at all hours to give her a hug. He sees Marsha's house as his welcoming, turn-around spot and Lane's as the animal farm. When Susan gardens, Taylor hauls out our hose too. And, every day I hear, "Saw Molly. Saw Molly." My neighborhood family calls me when they see Taylor and he's "stalled" on a street corner. I get messages from them double-checking to see if he brought me the gift they sent home in his hand. Their nurturing and watchful eyes keep him on their radar and guard him with their "in loco parentis" vision.
I am not sure I could have raised Taylor without this village around me. Every single one of them has played such a critical part in Taylor's development. This blog really is simply a toast to them--and to all of those of you who strive to love your neighbor as yourself. How could we do this life without one another?
Faithful readers, I would advise you to move close to us except that nobody ever moves away. Well actually in all honesty, I had a mid-life crisis a couple of years ago. I tried to sell my house. I thought I heard the melodious singing of the sirens and I was lured. Thank goodness the realtor goddess told prospective buyers that because I had no granite counter tops that my house would never sell. (Ok, she actually called it uninhabitable. Had she seen the wafer board upstairs, do you think?).
However, what the realtor goddess unwittingly made blatantly clear to me was this: So often we know the price of everything, but the value of nothing. I have memorized that lesson now. Nothing is more valuable than the villagers with whom we live...and love. Whose porch will we be on tonight, gang?
Neighbors near and far: Live in this (world) village with us.

Hazel, Golda, Taylor..Adjusting the Hoop

I hated it when, during writing courses, we were told to write about the most embarrassing experience of our lives. I know I've got plenty to draw from. Who though, can ever remember one when it's a timed writing? But here's one I do remember, and one that changed colors over the course of time. I know I will completely lose you "younger" readers, but just pretend along with me. You can google it all later if you want to---or not. OMG/TMI/BTW/LOL
In eleventh grade, our English teacher asked our very advanced class to each write down the one person in the world we would most aspire to become. After giving us time to ponder and chew on it for a bit, we handed in our folded little slip of paper with our visionary role model's name on it. I am truly a "gut" type of person which basically means I react from my gut without much twisting and turning, mulling or stewing. I did not realize I was about to be side-swiped (for life?) by this seemingly benign assignment.
One-by-one, Ms. M. unfolded the slips of names, offering much affirmation, adoring head-nodding, and proud smiles that shouted, "Oh, just look at these, my students-- our next generation!"
Names like Golda Meir, Thomas Jefferson, Harry Truman, Albert Einstein, Albert Schweitzer rolled off of our teacher's tongue as if we, her students, had already made our indelible marks on a changing world. Looks of acknowledgment and agreement were exchanged between us as each person envisioned the life awaiting us--after 11th grade. Everybody sat proud and tall ready to justify the name that had been submitted. But not me. I was about to throw up. I squirmed and writhed knowing full well that life, as I knew it, was about to be over. For on my little scrap of paper, I had written that I wanted to be like ......Hazel. Yes, you read it right. Hazel of
the Hazel that played the live-in maid on the 1961 television situation comedy.
Forget my being a world leader, a top humanitarian philanthropist, a renowned scholar in any field. Nope, my idol, my role model, the person I guess I looked up to most in the world was a live-in maid played by Shirley Booth. (I can't believe I'm telling this story out loud. Wow, I've come a long way.) Needless to say, the teacher thought she had read it wrong, asked me if this were some sort of joke and gave a grunt of total condescension and utter disgust at the lowly goals I had set for myself. "Who else?" she promted me. "Who else could you be?"
A feeble, " Well, uh...uh...maybe Jackie Kennedy," puddled out of my mouth.
Yes, indeed: elegant, thin, private, rich, equestrian, poet, trend-setter. Yep, cut from the same cloth she and I! Now we we're getting somewhere. Silly me.
Cutting to the chase (thank goodness), it was many years later, that, when in telling this story to a wise friend, I was led to see why Hazel had popped into my head that day and why I had gone with my gut. (The same gut that my teacher challenged, by the way. I felt ashamed that the traits I recognized had been summarily rejected and ridiculed. ) Hazel, in her role on that show (Called Hazel) was a peace-maker. She was a problem-solver, a doer, a believer in others. She was there to serve but she did not see herself as a meager servant. Her insight and wisdom and truth-telling to the family (The Baxters, remember?) brought meaning and purpose to difficult (albeit contrived) situations. Hazel was a mediator, a communicator, a negotiator, kind, friendly, loving, honest and loyal. That's why I wrote Hazel down on a slip of paper. I like those kinds of traits.
What my teacher totally missed in my response was that no matter what our situation, what our calling, what our station in life, or who we are--- we can bring those invaluable qualities to the table. And, yes, this is what Taylor has made glaringly clear to me. Each one of us has a calling. Do not look at others and assume they have no dreams or that their "hoop" is too low. It may not be where your hoop is, but for them, it's at the exact right height.
No matter Golda or Thomas or Harry or Albert, or Taylor....we each one have valuable gifts to offer to this changing world. Are we (or is it just me) so arrogant that we have defined which of us can leave the greatest imprint on this life? Taylor opens my eyes to the "what else"--to what other traits are precious and prized. I am wondering who you would write down if asked today? Who do you want to be when you grow up? And, if you can't answer that, I just saw something that will give you a hint. It says, "When I grow up, I want to be me." Write that down on your slip of paper. You will have chosen the exact right person.

Somebody Pray, Dammit!

If you've ever raised kids, something you've no doubt heard one hundred times is, "But I didn't put it there." or "But, I wasn't the one who dropped it." Of course, those responses follow your very simple request, "Honey, would please pick up that paper cup off of the floor?" I wonder what it is in us that leads us to think, "That's not my job. I didn't do it, so I don't have to be responsible for it." It's just not my turn.
You may have already picked up on the fact, that in my family growing up, there was a good bit of religious.....conflict? confusion? ambiguity? (All of those words carry about the same amount of weight, so I couldn't choose just one.) We were forced to go to church every single Sunday. We sang in the choir, attended Sunday School and went to youth group at night. The whole shebang. So why the confusion? Well, at lunch on Sundays, my parents would ask us what we had learned in church and then immediately begin to pull it apart. I like to believe that it was their sincere effort to make us think for ourselves and question.....everything.
For me, it created a chasm of sorts and caused a great deal of confusion. So, that's the long and the short of it. Religious confusion for a long while.
Here's what is so funny. We always prayed before each meal. Oftentimes we would sing a blessing. We liked that because it was group work and nobody was put on the spot. But on days we didn't sing, here's how it would go:
Daddy: Deanie, please say the blessing.
Deanie: It's not my turn.
Daddy: Martha, it's your turn. Say the blessing.
Martha: No, it's Joe's turn. I did it last.
Daddy: Somebody pray, dammit!
To this day, I can not hear a minister anywhere say, "Let us pray" without adding my own silent word: dammit. Is that funny or is that more religious confusion? Maybe it's both.
When, though, is it our turn in life to do what we are asked to do? When Taylor was born, I promise the question that I wailed in the night was, "Why Me? Why Me? Why Me?" I had tried to live a good life. I followed rules, helped others and loved my fellow man/woman. So, why did it have to be my turn? I asked that question pretty much constantly for the first nine years until one day an enlightened fellow shifted me off of square one. Taylor was getting physical therapy at a local hospital. In the waiting room with us was a quadriplegic gentleman lying back in his wheelchair--also waiting for therapy. Of course, I was pouting and fretting and out-of-sorts because I guess I wanted to be at the white sale at Macy's with all of you. After Taylor had gently rubbed this fellow's arm (Taylor's "hello" that day) the man quietly said, to me, " I used to ask God, "Why Me?". But you know, I've worked through that now. Now my question is "Why not me? Who better? Why not me?" Gulp. Shame. Regroup. Why not me?
Some of my readers recoil at the word, God---maybe just don't have much use for God. Others try to live your lives for God. Both groups, just sit still and listen. It won't hurt. Hear this. This is what I know: God does not call the qualified. He qualifies the called. Do you think for one second I was qualified to raise a son with Down Syndrome? That would be a big fat, "HECK NO!" But, somehow, it was my turn to do what was being asked of me. But, my dear readers, you are not off the hook. (Not even!)
You each have your own turns to live outrageously lovingly. I am certain that you can think back over the past two years and come up with a time(s) when you have railed, "Why Me?!" We aren't all called to raise handicapped children. Every single one of us has our "thing." If you can't come up with one, then maybe your calling is to drive the pace car or be on the support team or show up with the supply truck when the rest of us are having our personal tsunamis. But, I promise you that there's a "turn" with your name on it.
So what qualifies us when we are called? Well, coeur is the french word for heart. Courage is derived from the word coeur. That's pretty much it. Heart Courage. Courage from the heart. That's about all the qualification we need when it's our turn to do what we're asked to do in this life.
So, let's all pray, dammit. It's all of our turns. Pray for courage from the heart.

Hello, My Name Is ____.

I am going to go ahead and just admit that we go through a lot of drive-thru windows. There, I've said it. In fact, when my boys were young, Cole, my oldest, pleadingly asked one day, "Mom, can't we just for once eat lunch at home?" My response: "Hush, Cole, roll down your window and tell the lady what you want."
That should have been my wake up call. But, it wasn't. Poor kid.
So, that leads me straight (?) into names and name tags and knowing people's names and calling them by their (correct) names. During the span of my teaching career, I came to see that the sound of our own name is the single sweetest sound there is. Let me amend that by adding, our names attached to kind words and noticeably wonderful actions is sweet. "Beautiful job, Gayle." "Lovely work, Polly." Maybe the sound is not so lyrical when we recall our parents ranting up the stairs, " Theresa Marie Arrington, get down here this minute and clean up this mess." Either way, most of us love to hear our names spoken safely and lovingly from the lips of others.
So, today when we pulled through KFC, should I have said, "Thank you, Debra."? The guy who bagged my groceries at Kroger's name was Tim. I saw it on his name tag. But, do I say, "Thank you, Tim" or just pretend like I don't see it? The man who changed my oil (another drive thru) wore a little faux brass tag that read,"Jeremiah." Am I allowed or supposed to use his name in the sentence when I address him? Or does he remain anonymous and unseen---just a worker there to serve? What does it do for us when we personalize those name tags and you know, see those people as well.....people? People who have a mama and a daddy and brothers and sisters?
Human beings within my line of vision, touching, hearing? Are they nameless?
Many times when Taylor and I are out walking, people will stop us on the street. It's so interesting. They will speak to me, they will speak to my dog, Murphy, but so often they will not acknowledge Taylor on any level--no eye contact, no smile, no hello. Of course, no name. He's not there. He's simply not there. I've gotten better about saying (after they've made over the dog), "This is my son, Taylor."
I'm not sure it is always a "take"--like they'll speak next time and use his name, but it's a start. It's the start of a conversation that means that we are all important and have names and are real---real human beings. How does that go unnoticed so often? (Believe me, I'm in this conversation with you--not leading you.)
I sometimes think about The Vietnam War Memorial and the names engraved in that wall. Inscribed in the wall are the names of more than 58,000 men and women who were killed in the Vietnam War or who are still missing in action. Don't you know how their relatives must find some degree of comfort being able to go there and touch the name of their beloved etched on that granite? To see, to call, to say, to share the name of someone we love is to bear witness to the value of their lives. Calling one another by name is acknowledging that yes, your life matters. You have a name. You count in this life.
As a kid, doing sword drills, I always loved finding this verse: "Fear not, for I have redeemed you; I have called you by name, you are mine." So, here's my question. How, on a daily basis, do we redeem our love and connection for one another? Yes, for all whom we see and give money to and take double cheese burgers from? Do we call them by name? Are they real? Are we?
We each need a witnesses to our lives. We long to be called by our names.
This is my son, whose name is Taylor.
"Your life will not go unnoticed because I will notice it. Your life will not go unwitnessed because I will be your witness'."
Hello, my name is____.
Please be a witness to my life and to __________'s life. We all matter.

Scars

I wonder how many of you reading this have a scar somewhere on your body? I bet if we polled our readers, we could find scars from knee replacements, C-sections, broken legs, thyroid mess, carpal tunnel, tummy tucks, and no telling what all. Some of our scars can't be shown. Some of us wear our scars like badges of honor, pulling up the hems of our shirts to show them off.
Those scars meant that in some point in time our bodies and our lives were sort of out-of-whack. There was pain on some level. And, I bet if we asked you about it, you could tell us in minute detail every single aspect of your scar's story.
I just taught my brother, Bo, the expression TMI. (Not that he needed it of course; I was just catching him up on the latest texting trends. I'm cool like that.) But, yes, sometimes when we share/show our scars, our listeners are silently screaming, TMI! Over-share! Enough already! (Probably a bit like the picture at the top of this page.)
Taylor has three huge scars on his body. One of the scars was actually made twice. (TMI yet?) What nobody ever told me, though, as his mama and care-taker, is that the scar tissue that forms after creating that scar (surgery) can continue to keep the pain alive way down the line. Am I the only person out there that did not know that gem of medical wisdom? Shouldn't we have been trying to massage and Vitamin E this fellow all along? My guess is that if we don't deal with those scars on some level, there's a probability that discomfort and that nagging feeling will be a constant reminder of the original hurt for years to come.
But what about those scars that we can't see? How many times have you caught yourself saying, "Oh, he hurt me so bad. I'll never get over it."? Isn't that a scar you're talking about? Where does it show up in your body? What about, "I can forgive, but I'll never forget." I bet if you had to draw a picture of how that scar feels, it would be deep and ugly. How about, "I'll never speak to her again after what she did to me." How jagged and thick a scar does that leave in/on you? Oh dear. Unseen but very real scars......and all with scar tissue forming and hardening around them---and they are scars we've cut all by ourselves. Pause. Ponder. Wonder. Ask. Hate. Dismiss. Accept. True?
Here's what I know. I hate it that any of us ever has to hurt---physically, emotionally, spiritually. I hate it. Sometimes we can ask to be rid of that pain; it might take a knife. But for those other scars, the ones we allow ourselves to cut unconscioulsly (elective?)--- do we really need those as badges of honor of our hurts? I think there is a Vitamen E of sorts for those scars and that hanger-on-er scar tissue. You can rub it on and rub it in. It's free. You have some on hand right now. It's a potion you make at home. We each have all the ingredients we need.
Here's the formula: Compassion and forgiveness.
Compassion for our broken-ness.
Forgiveness for those to whom we've assigned the blame.
Rub some of that balm on to those scars. Rub some love into those scars. Rub some more; there may be scar tissue.

Glad So

You know, I think I've gotten pretty good at accepting that my precious son does not rank high on the national percentile chart on those intelligent quotient tests. What I am having a really hard time dealing with is that he just does not feel good many days. Op.Cit all over yourself; there's a posting about his surgeries. Yawn. Other people's surgeries. Yawn. But so often they provide such valuable information that helps us flesh out where a person is coming from. Taylor is not nearly in the same amount of pain that he was before or after the first spine surgery. But, still every day brings scheduled medications and lots and lots of being sort of fragile with our day.
Are you, my reader friend, what people call, "A trooper"? To me, that means that you roll with the punches without much complaining. (Gosh, don't we just love people like that--who aren't so high maintenance that the Blue Cheese has to be on the side and organic and low fat and oh, never-mind, just leave it off.) Nope, Taylor is a trooper. I can see in his eyes when he does not feel well. It absolutely breaks my heart. He has no language to describe his pain. I laugh at doctors who continue to recommend mindfulness meditation or mind-body Yoga for Taylor's healing. We lose Taylor the moment the guru beckons, "Imagine your cells floating..." Oops. Abstract thinking is not Taylor's strongest suit. Missing ingredient there, Dr. MD.
In the midst of a pain cycle, Taylor will look straight into my eyes and say, "Taylor smile." He knows how much it pleases me to see him smile and, by hook or by crook, he is trying to smile. (Kind of like smiling through labor or kidney stones?) In his valiant attempt to protect me and reassure me that things aren't so bad, he comforts me with phrases like, "Taylor better" or "Taylor alright." The pain in his eyes and on his body belie his brave little words. He would probably put most of us to shame with our whining and complaining and low-thresh-holds for things that just do not matter. Oh, so many lessons. So many.
What melts my heart is Taylor's response when I tell him that somebody else is not sick anymore or that they're better/well. The words, "I Glad So!" swirl out of his mouth and warm the air around us. Unlike so many of us, Taylor can get out of his own way and see you and be glad for you. I'll tell him that Deanie made it home safely or that my friend Terry, is happy, "I glad so," he says. And he is...glad so.
For what are we each glad so? What delights us so much that we allow ourselves to step out of our pain and out of our messes and just be so glad? Here's our homework assignment for tomorrow: Before daybreak tomorrow we each put down our monogrammed bag of wounds and worries---just one time...and let one other person on this planet know that we are GLAD SO that they are here as part of our lives. Extra credit: Double that. Brave words, those. Ready to "troop"? So glad.

Tattle Tale (s)

I love bumper stickers. I tend to live my life based on things one might find on a bumper sticker. I guess they might also be called reality bytes. One of my favorites is "We Are Only As Sick as the Secrets We Keep." Newbies to this kind of talk might want to read that sentence again. Our secrets keep us sick--our shame secrets, that is. It has taken me 56 years, but I think I am finally coming to grips between things that are private and things that are shame secrets. Has anybody else out there experienced these boundary-issue type things? Work with me here, please. Don't hang me out to dry along.
Taylor sees what he sees and says what he says. He is too "simple" to know how to lie. I swear it; he have never told a lie. Because he has no shame all tangled up in how he lives his little life, he just calls things exactly as they are. He's a tattle tale---but a pure one. Taylor's father used to try to pretend he didn't smoke. One day, Taylor rolled his window down a bit, hung a pencil from it like a cigarette and said, "Doe smoke." (Doe: his father) Tattle tale. When I fuss and fume he later reports, "Mama angry." Tattle tale. His care-giver might stay on the phone the entire time she's in charge of him and Taylor reports, "L. on phone too much." Tattle tale. Taylor "outs" us when we least expect it. Gosh, things we have worked really hard to keep hidden, become exposed and brought into the light. Taylor reports our over-sleeping, being left alone, my hurting his brudder's feelings, not having his teeth brushed, people being upset and who he saw that maybe he shouldn't have seen: I Saw Mommy Kissing Santa Claus type thing. Tattle tale. Or maybe he's not.
I don't know about you, but I seemed to have spent a good portion of my life keeping secrets. But why? Why is it so hard to just "be" with "what is" about ourselves? (Bumper sticker again: What we can't be with won't let us be.) Why all this cover up? (Oh, now, don't go and start hiding your junk: drinking too often, lying about what you eat/don't eat, having a relationship you can't talk about, being in debt, TV addiction, compulsive spending.) What's your shame secret? We've all got 'em. We've all got them because we're all human. Why do we keep trying to make that a bad thing? We tend to live as if we don't have so much "junk" in common. But we do. We're a "we"--not just an "I." We let the fear of our secrets keep us separate. Besides being counter-intuitive, isn't that just so weird?
I am so lucky for my son-shadow tattle tale. Taylor keeps me honest. It has taken me 25 years, but I think I've finally figured this role of his. Taylor's tattle role is to live and help others to live openly and honestly no matter what. He sees the emperor with no clothes and makes a simple observation: That man is naked. There is no judgement or ridicule. It is just what it is, plain and simple. Taylor sees what he sees. He tells what he knows to be true. It's the rest of us who spend our lives trying to convince one another that the truth is not the truth. Another bumper sticker: The truth will set you free....but first it will piss you off. Sorry for the bad language. But it's the truth. Oh, get ready for Taylor to tattle on me again. Thank goodness. Any truth seekers out there need to borrow him? Are we ready to shine the light on our shadows?
I-llness....We-llness. Truth.

Perfectly Polished

Taylor's fingers were webbed when he was born. Having no clue at all that I had just given birth to a baby with Down Syndrome, I thought the worst of my troubles was his webbed and imperfect little fingers. When told about the syndactyly (doctor's word for those webbed fingers) I asked sincerely, but blindly, "Oh, could you please fix them before we take him out to meet the family?" Little did I know at that point that (1) No, there would be surgery later for that and that (2) There was much "bigger" news waiting for us in the recovery room. Having applied fresh lipstick, it was now so important that we present yet another perfect son to this packed waiting room world. Holy Smoke. I wanted perfection. I wanted his fingers fixed---then and there. "Wasn't there at least a glove they could cover them with in the meantime?" I pleaded. Looking back, I wonder who it was I thought I was really disappointing? There was trouble in River City. Trouble with a capital T, and it was not going to be about Taylor's fingers. It was going to be about me. Damn ( Me again)!
Gosh, does it just fall under the heading of "Human Nature" to want to be perfect? Or, is that something imposed on us from our very first breaths? We use concealer under our eyes, dye on our hair(s), wear Lycra to pull in our our padding. We're so quick to hide a bump on our faces or blisters on our lips. And these are our minor perfection attempts. We pretend we have more money than we do. We nip, tuck, smooth, flatten and straighten our imperfect bodies. We imply that our children don't want to kill each other at home, that our marriages are thriving and that our bathrooms are always clean. We hear ourselves spouting, "I'm certainly not perfect," all the while whirring that rat wheel at maximum speed trying to maintain that "perfect" level. It's exhausting. And, besides that, nobody really believes us. Heck we don't even believe ourselves.
My mother had 8 children; she had five of us under age five at one time. Every night my mother lined up our little white leather shoes, scrubbed them and polished them. Every night. Five pairs of white shoes scrubbed and polished ready to greet the world on a new morning. What strikes me now is that in some weird way, it was her futile, but earnest attempt to have some power over a life that must have seemed at times out of her control. But she laid out those shoes and polished towards perfection---hoping that at least on the outside the life over which she had probably lost control would appear normal and good and happy...and perfect.
In having Taylor, I have had to relinquish so much of my need to cover up, to be a master of disguise, to make things appear "better" than they are. I have had to surrender perfection. I wanted to cover those precious little webbed fingers with gloves. They looked wrong for this world. "Fix them!" I cried. I wanted....I needed him to be perfect. No, I needed me to be perfect. Maybe I thought I needed to keep up with each of you. Deep breath. Another question. Do we really need all of this fixing? What is "better" and what will it bring to our lives? I know you're reading this saying, "Oh, she aught to know that none of us is perfect or tries to be perfect." Really? Take off your mascara. Drop your expensive hand bag. Talk to somebody about the child who has your stomach in a knot. Disappoint your boss. Miss a deadline. Take that glove off of your own webbed-heart. Throw away the polish. What real and very beautiful part of you is hiding? We're all in the waiting room. Do not fix a thing. Come out imperfect. Imperfectly polished.

Preach. Use Words Only When Necessary.

Taylor can't talk. Well, he can sort of talk, but not really. Taylor can not read. He can barely write his name. But Taylor can communicate and he hears you loud and clear when you communicate with him. He just doesn't use many words.
So short lesson here: There are 450,000 words in the UN-abridged dictionary. Shakespeare used 60,000 words. Most 25 year olds (Taylor's age) have about 15,000 in their back pockets. Man! That's a lot of talking we could be doing. A lot of hot air. A lot of truths and not-so-truths.
There is a church down the street from us. It's one of those churches where the young people ride bicycles and go door-to-door. (They are very nice to us and let us ride bikes in their parking lot.) But often, they will stop Taylor and me and ask, "Do you mind if we share the Gospel with you? May we witness to you?" My response is always this, "Of course you may. Just don't use any words. Tell me anything about what you believe but do not use words. We're right here for you. You may begin."
You know, here's something to think about. We never really ever need to tell people what we believe. If we could hang around each other for three days, we would be able to tell each other what we see; our (unspoken) beliefs would come shining through. It would be completely obvious. We should be living it---out loud. We are doomed if we have to add subtitles to all of our actions. (I am attending my own lecture here, you can count on it. Holy Cow!! This is so jarring to know---and then admit!)
Taylor speaks through soft touches, easy embraces, direct and open eye contact, and always always with an open heart. His language is one of few words but of total acceptance---of you...of me. How do we--yes, you and yes, me -- speak compassionate acceptance for each other without saying one word? Preach what you believe. Use words only when necessary. Will it be obvious to the rest of us what it is that you believe? No subtitles allowed; take them out. Most of us white-knuckle our way through life protecting what we claim we believe. Silently and arrogantly we almost dare others to question the very actions they witness in us. Sometimes what others see from us just does not line up with what's coming out of our mouths. For example, I would tell you that I believe in helping "the poor." But, am I willing to forego a new kitchen floor, getting my hair colored and cut, buying yet another pair of shoes I'll never wear, or sacrificing those 1500 thread count egyptian cotton sheets? Please look away. I don't think my words match my beliefs. How about you? What is your life's sermon saying? Will we be able to see it? The sound is now muted. Preach.