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.

I Heard You Whistling

Every year when school was about to start, my parents would haul 5 of the 8 kids in our family to Rich's in downtown Atlanta to buy school clothes. Let loose in the department store, we'd be given parameters (which of course we ignored) and always a common meeting time and place. As time drew near for the "round-up", a familiar, clear, vibrant whistle (two tone) split through the Muzak and stopped us dead in our tracks. It was my mother's two-tone calling to her children: I am here. Come this way. I am your mother. Get over here my children; come towards the source of the sound. She whistled this call to us in many public places--on the beach, in grocery stores, out of our back door. Her whistling brought a sense of routine and comfort to our lives. It was distinctly recognizable. Just hearing those two pitches from my mother's lips was all the alert we needed to "hop-to" and head back to the barn.
Taylor loves it when I whistle. I have other talents about which I could brag more ardently. I am a pretty good teacher. I am punctual. I can get my own Saran Wrap started. I can sing on pitch. I can fold double-fitted sheets. Yet, and still, the only one of my talents that Taylor has ever given me indication of that really impresses him is my whistling. I whistle along with the dwarfs in Snow White. (Hi Ho!) Today I was whistling my favorite song along with a CD. You get it. It's not constant, but I can break into a sweet whistling when I need to. Now, mind you, this positive reinforcement lavished by Taylor is not immediate. He usually waits an hour or so before he quietly drops the compliment, "I heard you whistling." And he smiles and touches my hand. Like he thinks I single-handedly informed NASA how to bring The Endeavor back to Earth. Like I should audition for Julliard's graduate program. Like I am the most incredible human on this planet. He heard me whistling and Taylor thinks I am magic. Even though I am never acknowledged for all of my other talents (listed above) this whistling talent is a always a winner in Taylor's eyes.
Taylor never asks me to do anything for him. He is content with any love that I offer. There is no guilt trip from him or martyr card to be punched. His love is truly unconditional--and rare. Today when Taylor said, "Mama, I heard you whistling," I thought of my own mother's whistle and what it meant to me. I believe that what Taylor hears when I whistle is a sound of distinct and steadfast assurance from his mama. The whistle's sound is, "I am here. This is where you'll find me. Come here. You are mine." I whistle and Taylor hears me. I called to him. He knows he is mine. He heard me whistling and made his way into my life.
Confession: I was lying about being able to fold double-fitted sheets, but I can whistle. Do you?

Idiot? Who?

After being married to my mother for 43 years, in his late 80s, my father married twice more when my mama died. He personified the saying, "There's no fool like an old fool" with the last wife. One of his wives (hesitant to say "step-mother" here) mentioned very casually one morning, "Oh, time was when we would have called Taylor a Mongoloid Idiot." Um....Vomit. I could probably have lived the rest of my entire life without ever having heard that sentence. But, it was spoken and it sometimes rings in my head. It must have pushed an old button from my childhood. My father, was both saint and sinner--maybe more of a sinner...it's hard to say. In his attempt to spur on his eight children---to climb to our highest heights, live life successfully, become all that we could be....he would say(Shout? Scream?)when we disappointed him, "Are you going to be a G-Damn Idiot all of your life?!" Atta boy, J.T., way to motivate your children to live out our vast potentials. (You can see that I may have a whole other blog waiting here, but I won't go there .....just now.)
Having been a teacher forever---35 years at least--I am on the record to say that it is absolutely never ever acceptable or appropriate to call a child an idiot. Ever. It's unconscionable actually. There is just not enough "White Erase" out there to wipe those words out of our psyches. Forty thousand affirmations later and I can still hear my inner voice begging to be heard, "You are smart and capable." Idiot. Mongoloid Idiot. What were they thinking?
It is true that Taylor does not have a high IQ. (I tried to cheat on a few of IQ tests for him, but I think it brought his score down even further.) But, an idiot? Why, what on earth would that mean anyway? Well, actually here's what it means literally: blockhead, bonehead, cretin, dimwit, dork, dumbbell, dunce, fool, ignoramus, imbecile, jerk. Had enough? Looking over that list, I do not recognize one word as it relates to Taylor. I do, however, see a few that might describe me.
My father was wrong in his attempts to "inspire" his eight kids to thrive in college. He was sinner and saint.....like.....like......oh, yeah, like all of us.
On the day Taylor was born, my parents drove 500 miles to my hospital bed. The very first words that came out of my father's mouth were these: "Not many people can have a baby like this, M. You are so special. He is so special. I will love Taylor with all of my heart." And my daddy did. It's taken me years and much soul searching, but I have realized that any harmful words ever spoken to any of us have only to do with the person saying them. It's always own fear of our own "stuff" that scares us, provoking us to call others full-of-shame names. It's our stuff; nobody else's. Idiot. Who?
Maybe that's why words like, "Forgive them" keep us awake at night. Forgiveness is a good thing. It unclogs our hearts and our lives and our vast potential. It urges us to look inward towards our own stuff. Have you got any saints or sinners in your life that you need to forgive? Forgiven? Who?

Inns, Barns...Vacancies?

I was never part of the in-crowd. Shucks, I'm was lucky to be a part of any crowd----besides the crowd that was my huge family. I was raised in a southern town when integration was in full swing. My parents were (and I quote here) "Nigger lovers." I didn't call them that. That's what other adults (and some peers) called them. We didn't endear ourselves to lots of groups (like churches, social clubs, non-integrated anything really.) On a deep/core level, I never ever questioned my parents' beliefs that all people should have an equal opportunity for.....well, everything. I wonder why that caused so many people to distance themselves from us?
What was wrong with loving all of God's people? Why did that separate us and and divide us? Because of the stance my parents took, the no-vacancy sign at the Inn went up right away. We were different. The implication was, "Maybe you would fit-in better out back in the barn--you know, the stable." (Anybody visualizing a star in the East yet?)
Even though I guess I knew I didn't have a fighting chance of being in, during puberty, I tried my mighty-est to still wiggle my way into being accepted. I sewed designer labels into my homemade clothes, did my hair right , and learned cheers even though I couldn't jump. The bottom line: There was simply no room for me in the Inn-Crowd. Every time my parents allowed our few black friends to enter in the front door, join us for lunch at our dining room table, and (God Forbid!) ride in the front seat beside us, the flashing neon "No rooms" sign came alive.
Isn't it interesting that born right smack dab into the middle of my life is this son who will never ever really fit in and for whom we have had to fight so hard for equal treatment? Nobody ever has to actually say, (and I quote here) "retard", but the separation is there---or could be. The difference is is that Taylor has never suffered from rejection. He has not suffered from being left out. He's way too "knowing" to suffer from anything so foolish. I, on the other hand, am not as smart as he. I have chosen to suffer.
I've gotten my feelings hurt. I've cried and pitched fits. But, as I've gotten older and wiser, I'm liking it out behind the Inn (crowd) with its authentic smells and goings-on. I've always sort of had a thing for those who are willing to shepherd others and tend their own flocks. And, besides that, I've got wise men (and women) visiting me now. After all, you are here, aren't you? And, like Taylor (and me!) you've come to this life bearing gold. Oh! Oh. Star of Wonder.....Are you singing yet? Please....just one verse wherever you are. Offer, to this life, the gold you bring.

The 21st Pair

Let me ask you this, "What do you tend to believe: your own two eyes or a piece of paper documenting what you're supposed to see?" I've think I've confused you right from the get-go.
Taylor was born on a Saturday. His physical features (what my eyes showed me) was that he had a slightly protruding tongue, a thick neck, a full palmer crease (check your palm to see if the crease stops mid way), folds on the tops of his ears and webbed fingers--for starters. My eyes saw what I saw, but my heart screamed , "NO!" Everything in me resisted.I second-guessed my own seeing. How could this be? I knew they are wrong.
Here's what the pamphlet stated that was left on my breakfast tray: "Down syndrome is the most frequent genetic cause of mild to moderate mental retardation and associated medical problems and occurs in one out of 800 live births, in all races and economic groups. Down syndrome is a chromosomal disorder caused by an error in cell division that results in the presence of an additional third chromosome 21 or "trisomy 21." I think it's the first time in my entire life when I left sausage biscuits and waffles un-nibbled-at. I was sick. (I've already admitted publicly to not being a happy camper---a wuss, a fraud, a weakling. It's all public record now. I have forgiven myself for being....well....me.)
Our doctors, just to be on the safe side (you know, we see what we see, but you're never going to believe us...side) informed us that a karyotype analysis would be run for Taylor. This piece of paper would prove once and for all, that yes, indeed we would take home a baby who could be moderately mentally handicapped. (Still not eating the sausage biscuits---but where was the weight loss, dammit!)
Within a month, just like a scheduled Master Card statement, here came the official Karyotype data on Taylor from the Medical College close by. Sure enough, right there on his 21st pair was that extra chromosome. You, my friend, have 46 chromosomes. Taylor has 47. I stared at that diagram. I sobbed. How could that one extra little squiggly line have such profound implications for my life? (Where was the White-Out and maybe they had gotten Taylor's mixed up with that other child's chart.) Nope. Here is was. I had the documentation to prove it. This was going to be a tough life.
Here we go, down that other conversation path. Question: Just because something is written on paper, does that means it automatically defines and dictates our lives? I have a couple of degrees--on paper. Am I highly-qualified? I have a divorce decree. Does it dictate that I be vengeful? Some of you have adoption papers, Chapter 11 papers, police reports,death certificates of loved ones, notification of foreclosures, papers that state you're the national winner of all great things. Let me ask this again: Are we required to be defined by what is written down? Do we have to let it mean our lives are over or meaningless or that we need to give up?
I have the paper work on my son. He has 47 chromosomes. I can see that in the drawing. When I look at that "document", I think of this from The Little Prince: What is Essential is Invisible to the Eye. I've got paperwork that says one thing. Taylor, on the other hand, does not live in that paper. None of us lives in those "proof papers." No, we live out here with one another. I know what my eyes (and heart) see. "It is only with the heart that one can see rightly. What is essential is invisible to the eye."

True/False, Fill-in-the Blank, Multitple Choice

I think we've gotten so used to multiple choice questions (Do you want chicken, beef or turkey?) that, when left trying to answer plain-ole "Fill-in-the-blank", we freeze. I bet you're pretty good at Jeopardy sitting in your own kitchen playing along with Alex. However, I have a news flash for you. In real Jeopardy, they don't give you any credit at all for answers like these: "Oh, I know this one! It's...uh..uh." Or "It's on the tip of my tongue; I just said it yesterday." Nope. No credit. You either know the whole blame thing or zap--zip--zero. You lose.
Most days I feel like I am being asked to come up with the answers to so many questions that I know I'll never be able to answer. I can usually fake it through a True-False question. Example: Taylor will find a career today in which he excels. (False) Or: Down Syndrome Adults have very few options after age 21. (True) Some of the short answer questions or essay questions really throw me for a loop. For 5 points: Discuss how you can meaningfully engage your adult Down Syndrome son in the life around him. Even if I make an outline, these kinds of answers are tricky and almost impossible for me to answer. I bet you can come up with some of your very own questions concerning your own life. (Example: In 25 words or less explain why your kids simultaneously chew you out while asking you for a ride to the mall.) See? These are hard questions!
Thank goodness "Who Wants to Be A Millionaire" and shows like that came along! Just in the nick of time I might add! Finally we've been given public approval to call for help. As we struggle to answer these $64,000 questions we can at least phone a Friend, use a Mobile Shout-Out, or..... and I love this one: Use a life line. Yep, call up Uncle Melvin, sitting in Peoria, waiting for our call. Seriously, where would any of us be if we had to do this successful living thing all by ourselves? The questions are just too hard some days. There are too many unknown answers. Or there are too many answers that could be Both A and B. (Is that true or false, would you say?)
Warning: Polling the audience doesn't always work. Just thought I'd clue you in that one. The studio audiences in our lives may not know the capital of Uzbekistan any more than we. Hence, it's probably not safe to rely on them to tell us if our child needs to be "in a home" or not. I am counting on you to sign up to be a lifeline in this life with me. Are you up for that? If not with me, with others? Phoning a friend....that's probably going to be the best bet any of us has. True. Definitely true. And, it's Tashkent, Uzbekistan. Call me.

Blind, But Now I See.....Better.

My friend M. used to be a doctor. After a few babies, M. decided to be a full time mom. OK, segue with me here.... I never really did get a full grasp of the Krebs Cycle and couldn't have drawn you a graphic of meosis if my life depended on it. M,-mother and doctor,on the other hand, probably understood this sentence more completely than I: Down Syndrome is one of the most serious chromosomal genetic diseases. It happens due to errors during the cell division. When meiosis happens....Oh damn! How was I supposed to know in 9th grade Biology that, "Yes, this will all be on the test....The LIFE test!" (Harder tests than paper/pencil tests, I assure you.)
You know what? It doesn't really matter so much what we know to write down on paper. The learning that seems to stick is the one with lessons that reach down into our guts and sort of wring us out. This is just a theory. Well, ok, a true theory. My friend, M., with her last pregnancy, gave birth to a son with Down Syndrome. She has not told me this, but my guess is that even though well-MD'd in mitosis, meiosis, chromosome study--even the Krebs Cycle---my guess is that her heart was torn wide open and maybe charred around the edges. Book learning and heart learning do not go together as neatly as we might expect. Sometimes there are huge chasms to jump. The other day, M. emailed me these words. She said I could share them with you:

I have come to recognize myself discounting people because of their differences from me (however huge or insignificant they might be) by peeling back the layers, over the years, of how often and in how many ways I have discounted and distanced myself from them. My son has taught me that, not by being so high functioning that I come to see the difference as insignificant (or by anything he said - complete sentences are still not the rule, much less abstraction!), but by being his difficult and different self in my face and demanding my love and solidarity 24/7. Because it has been such a struggle for me, and I have failed so many times. And because he has been so forgiving and continues to hang in there and love me just as if I'd done it right. It's almost like a muscle-memory kind of thing. Because of my experience with N., I know what it feels like to discount someone, to make them an object, so I sometimes can notice when I do it with other people as well. Another lesson tucked in there for me is that I don't know how blind I am, until I begin to see. so many times I was sure I was doing it all right, and didn't have a clue! No telling how many more blindspots are waiting for me!

The part I love the most in what M. shared is that her son/my son love us just as though we've done right by them. That is so lovely. Bottom line: It doesn't really matter if we can name all the parts of a cell. It does matter that we hang in there with each other and support one another knowing that we are trying to do this life right---struggles, failings, blindness, and all. Muscle-memory. Which muscle(s) are we each going to work on today? I'll forego Abs--and concentrate on the heart (muscle).

Feet Washing

Bodily Functions. Mostly they're private. My good friend’s Great Aunt Martha, when hand-bathing herself, used to jokingly say, "I'm going to wash as far as possible.....and then I'm going to wash possible." Allowing others see our "possibles"---naked!-- makes us vulnerable and a little embarrassed. OK, a lot embarrassed.
I know that some of you reading this have been care-givers to aged parents, to sick spouses, to dying brothers or sisters. You have bathed naked parts, cleaned bare bottoms, and helped your beloveds up and off the potty--often carrying them across bathroom floors in your arms. It was humbling for you....for them. This bond is also inexplicably sacred and holy. It's extreme care. No doubt about it.
Every single day of Taylor's life, I bathe him, brush his teeth, help him shave, clean his bottom, and help with zippers and buttons on pants and shirts. In short, all bodily functions ebb and flow between us in the span of a day. I want to remind you that Taylor is a 25 year old man-child. (Just thought I'd refresh your visualization in case you were missing something here.) To an outsider, this care-taking must look like just awful drudgery. Some Friday nights it does seem like real work. I'd probably like to be dancing to Lady Gaga--whoever she is. Frankly, many days I'd just rather be shopping at Macy's. But somewhat miraculously, caring for Taylor in such an intimate manner is a bit like how I sort of think of "feet washing" in the Bible. The feet washing ritual is meant to be an act of love, is it not? It's an act of utter humility. Isn't it sort of the bottom line as to how we should love one another?
It has not been lost on me that, for most of us, the people we rely on to be our feet washers often do not even speak our language. Most likely they are from a country far away and one with whom we have been at war. Yet, we trust these feet washers to hold our feet, cleanse our feet and make them better. They rid us of all our crud. I ask you, is this act of service a sacrament? Where is the start and stop button in our daily lives that informs us, “ Now, listen here, self: This here is a holy moment, but that other five minutes was a waste of time.” What about the "Kim-Li Huong"s who wash our feet? Are they important in the plot of our lives? I’m just throwing this out here: what if every single encounter we have with another is actually sacred? Would that push us to re-think how we may want to revamp the way we might live our next 24 hours?
Don't get me wrong, if I had my druthers, I would have been just as happy with a son who could totally care for himself. But, that was not in the plan this go-round. I have always loved "foot washing" best among all rituals. I guess I'm lucky that way. I get to practice similar extreme care every single day. Wanna join me? "You also should wash one another's feet." I know I’ve read that somewhere before.

Lettuce By Any Other Name

When Taylor wants mashed potatoes, he asks for lettuce. Actually to him, lettuce is also called lettuce. He says the exact same word for groceries and glasses. He called ketchup "wope" for years. Taylor calls hammocks, tents. He calls my friend Abigail, Carin. He calls my friend Mary, Emma. It takes some decoding and doing that computer-mind "skimming all programs" to be able to settle sometimes on what it is he is saying---and then means. (I just had a brain pop: Maybe I am eating the wrong kind of lettuce. Is that why my pants don't button......or is it my detergent?) What-ever!...as they say.
There was a wonderful family in our church growing up who had a son with special needs. Thinking back, I can't ever remember anybody else in our church who did not look "perfect" on the outside. P. was such a neat and fun guy. For years he brought real joy (and laughter!) to so many lives. This was way before it was ever on my radar that I might be doing this same sort of dance down the line. (Are crystal balls all they're cracked up to be?) I remember in high school P.'s brother telling me that when P. got cold at night, he would sing. Apparently he did not shout out for one of them to help him with his covers. No, he sang. He sang and his family knew. His song was their cue to get out of their own beds and go to P.; Their brother was cold. He needed his covers. So he sang them a song.
Every single person reading this right this minute wants to be heard. Especially when our beds, our jobs, our lives are all askew and knotted up, we want people to know what we mean when we say something. It's even better if people know what we mean when we don't have to say a thing. Sometimes, though, when we get cold, (afraid/uncovered/needy) the words have a tough time making their way up from our hearts and out of our mouths. So many times, like P., we just want someone we love (and you are truly going to barf here)to bring us warmth--to come check on us. (Did you live through that last sentence? You know it's true, so get over it.)
Mashed potatoes. Lettuce. Hear me. See me. Get to know me. Pay attention. That's what we're saying really. Listen to my song. Come to where I am. I have something I need for you to know.

Pumice, Well Sort Of......

Gosh, I hope my mother is not reading my blog today. She's in Little Debbie Cake Heaven--that's mean---"regular" Heaven is what I meant-- but I know that she would kill me for what I'm about to write. Jumping right into this (are you ready?): My mother never talked to us about sex. Nope. I can't really remember either of my parents sitting on the edge of the bed saying, "Honey, there are birds and there are bees." What I remember happening is their taking us all into a train station in Washington, D.C., saying, "Go in there, read everything written on the walls. When you come out, and if you have any questions, we'll answer them." Was she kidding?? You think I'd ask my own mother (who would not say the word pregnant out loud) about any of those bathroom wall words! Not hardly.
Which, of course leads us to my poor birds-and-the bees skills with my growing handicapped son. I know you're going to want to read this next sentence twice. Down Syndrome males are sterile but not impotent. Is that cleared up now? So, yes, Taylor has more testosterone in his little finger than...oh, I won't even finish that sentence. Let me just say that part of our raising and educating Taylor has been to teach him what is private about his body and what is not. Of course...all with not shame. Good luck, right?
Early on, Taylor's word for penis became pumice. Who knows why. It's a bit awkward to not only write about this, but to teach him about.....well.....the pumice.
Come on, now...how'd you do with your own children? Basically, what we really needed Taylor to know was good-touch/bad-touch stuff: "It's your pumice. Nobody else's." And go to your bedroom for anything private. (Pretty good advice, huh.)
He's done great. He's appropriate and knows all the "rules" about PDA.
The only thing that has backfired is when any word that sounds vaguely similar to penis (peanuts, peas, please us, etc), Taylor reprimands everybody in the room for "talking dirty." We're dead in the water if anybody ever asks, "Hey would like some hummus and peanuts?" Don't Say It. Go Nice. (Ibid. Op Cit. Benedictus other blog post.)
Whew. We've got this conversation started. There's more. Mama, go distract yourself in the angel kitchen. She does not want to hear the rest of this. Good reader: Are you squirming yet? I'm blushing. Penis. Pumice. If Taylor could read, I know I would have sent him in to see those words on the walls of that train station. I wonder if pumice is written anywhere. OK, you can laugh now. Aren't you glad it's me and not you? (Just send money.)

Shut Up. Don't Say It.

There are four words that, when Taylor hears anywhere, he adamantly admonishes, "Don't Say It!" Here are the trigger words: Shut up, Stupid, Penis, Bosom.
If you stick with me long enough, I promise you I'm going to write about stupid, penis and bosom. Today, you'll have to settle for: "Shut Up. Don't Say It."
It should not take a "retarded" person to have to remind the rest of us folks that it's not polite/nice/loving to tell each other to, "Shut Up." Actually, those words are so offensive to me when spoken out loud that I just cringe when I hear them coming out of anybody's mouth. Of course, mostly said in anger or with the defensive tone, they just totally dismiss and shame the 'hear-er.' It's like: You are not even worthy of my noticing that you are here with me. Just mean words. Hateful words. Dismissive and rude words. And Taylor knows it.
I guess you've caught on to me by now and can see that I'll try to lead you down this other path--inward...outward. It's the second part of Taylor's response that is really the most crucial. "Don't say it." My older son has reminded me often when I've made remarks, "Mom, you can't un-ring a bell." No indeedy---we cannot take back words. They resonate in our heads, our psyches, our hearts for years and years. OK, let's do an experiment right this minute. Think of one thing that somebody in your life has said to you that made you feel like just awful about yourself. You may need to go back to when you were 4-5. It may be something that your husband/wife/sister/brother said in jest. More than likely it's something your mother or father said to you years ago that plays over and over again in your adult brain.
I am here to ask you....what if those hurtful words had not ever been spoken? What if we (yes, me and you since we're the only ones here right now) had not made those words define who we were/are? What if we had not let them mean something bad about us? Holy Toledo!! We would have so much more love for ourselves. That would be a good thing.
Dr. Phil told a parent on his show yesterday, that "It takes 10 atta-boy’s to erase one negative comment." At least ten would be my guess. I am pretty good about being kind to children, but I lose total custody of my tongue when I talk about some adults. I am here to ask you, "Does that count too? Talking "bad" about people?" I'm sunk. Are you? OK, just for today, Let's do a Jenny Craig "diet" of harmful words to others. Shut Up. Don't Say It. Oh Lord, I know I'm going to cheat on this diet too. Darn. How about you?