Sunday, February 28, 2010
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.
Saturday, February 27, 2010
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.
Friday, February 26, 2010
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?
Thursday, February 25, 2010
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.
Wednesday, February 24, 2010
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.
Tuesday, February 23, 2010
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?
Monday, February 22, 2010
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?
Sunday, February 21, 2010
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.
Saturday, February 20, 2010
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."
Friday, February 19, 2010
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.
Thursday, February 18, 2010
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).
Wednesday, February 17, 2010
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.
Tuesday, February 16, 2010
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.
Monday, February 15, 2010
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.)
Sunday, February 14, 2010
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?
Saturday, February 13, 2010
Taylor just hates it when I fight with anybody. Fighting to me means saying ugly things in a syrupy voice or saying nice things in a very condescending and ugly voice. No matter how hard I might try to disguise my anger/resentment/discontent, Taylor unwaveringly pipes up with, "Go nice, Mama." Damn. I thought my snarkiness was pretty well covered up--camouflaged---and undetected. But, no, until he hears a change in my voice (and in my attitude), I am coaxed unwillingly into "Going Nice."
I hate that. Sometimes I really just need to chew out my "Step-Husband." I've had fights with my siblings, my other son, telemarketers--you know...people----within earshot of Taylor. I can see this look come over his face that asks, "Can't you find another way to work that out??"
Oh, it makes me so mad. It irks me because I know he's right. He's right and I have work to do---on myself. (Here we go again. Does it ever end?)
Taylor's brother and I have had our squabbles and both walked away feeling unresolved and angry. On several occasions, Taylor has actually physically pulled us back together, turned our bodies towards one another----face-to-face and said, "Talk." Yes, talk it out. Work it out. "Listen it out" for as long as it takes. People aren't supposed to treat each other like this. Listen to each other. Hear one another. It's like Taylor's form of mediation asks, "What is it that he needs for you to know? What do you need for him to hear from you...about you?" Oh my goodness, Taylor knows--knows on the deepest level, that loving human beings are here to work things out. Face-to-face with people we love means hearing, listening, talking, and then listening some more.
It's a bit hard having my very own "Go Nice" police hanging around me 24/7. Hard as I try to "fake him out" (Say nice words in a mean way), his Go Nice detector is unfliching--relentless. I sometimes have an "itch" to be mean. Don't you? But, here's yet one more slugger: Why do we ever need to be hateful? Determined? Yes. ("Yes, you will provide services for my son.) Mean? No. ("And, besides that, you look awful in those pants!")
Being kind basically boils down to this. Go Nice. Pretty simple. In life, get the job done. But, always, Go Nice.
Tuesday, February 9, 2010
I never had a brother like Taylor, so I can not really speak to what it must be like for Taylor's older brother. As I sit in the other room when C. comes home to visit with Taylor, I hear this conversation:
T: My brudder
C: Hey Taylor
T: My Brudder. Boo
C: Hey Taylor. What are you doing?
T: My Brudder. Boo.
(Copy and paste that about 100 times and you've got the entire conversation.) I know that this must be frustrating and probably a little sad for my (wonderful!) oldest son. There must be some longing in him that craves a regular brother-brother relationship. Even though it's totally irrational, I feel responsible that C. was robbed of that complicated, irreplicable experience that having a normal sibling brings. He can't rag on his parents. There are no, "Remember when mom set the cat on fire!?" stories. Who does C. turn to when he sees one of his parents loses it?
Again, I don't want to speak for C., but I know this life must have been hard for him.
When Taylor was born, people asked us constantly, "When are you going to tell C. that his brother had Down Syndrome?" Uh, well, let me see. What exactly is it that you want C. to know about his brother? Won't he figure a lot of it out and don't you think it'd be best to answer questions as they come up?
Along about 4th grade, C. came home from school and said, "Mama, my friends say Taylor is retarded. Is he retarded? Gulp. Breathe. Here it is!! The BIG question. "Yes," I responded calmly and gently. "What do you think retarded means, C?" Without skipping a beat, C. exclaimed, "Oh I know what it means. It means Taylor is either bow-legged or chicken-toed!"
"EXACTLY!!" I replied. Exactly, my wise son.
Taylor's older brother is an incredible human being. He is the most compassionate (and witty!) person I know. He both loves Taylor with all of his heart and mourns the loss of the "normal" brother that did not show up. C. is as brilliant as Taylor is intellectually challenged. Is some ways they are complete opposites. In ways of the heart, they are identical twins. They are brothers. Taylor could not have chosen a better big brudder to accompany him through this life. It's probable that C. ended up choosing just as well. Bow-legged or standing strong--gifted both. And, in so many ways, each a gift to one another. (Is anybody besides me hearing the swell of the violins right about now?}
Yes, he's Taylor's brudder.
My brudder. Boo.
Well, I just gotta tell you that the picture you're looking at makes me cry. It's been two years since Taylor's second major spinal surgery, but I see that picture and my heart relapses right back to that space. We thought Taylor's first 20 years were hard until we got to year 21. That year, we were flung wildly off a cliff. Long about then, Taylor's spinal cord began compressing. When your spinal cord compresses, it basically cuts off breathing and all of your bodily functions. Taylor's entire life changed. Our family's entire life turned upside down--again.
Many of you who are reading this have had a child, a spouse, a relative who has endured life with chronic pain. For those of you who have not been through this, take our word for it: It's awful. My Taylor was in chronic pain, but he could not tell us. OK, that falls under the category of "Feeling Helpless/Hopeless."
My brave little soldier/son, has had not one, but two major spinal surgeries. (For you medical types: Occipital Cervical Fusions) The first surgery was criminal (another blog) The second surgery saved his life. Our hero, Dr. A.H. Menezes (Iowa University Hospital) repaired and restored Taylor's spinal cord. Gosh, I love that genius doctor. There's really not a "but" here, BUT, Taylor had to wear that brace you see for one year.
You got it. If you think slanted eyes, a big tongue, and thick neck turn off people in Cracker Barrel or at a Christmas parade, just add that Minerva brace into this equation. I felt like a leper. I cried. Taylor hurt physically. But, here again is the miracle. Listen carefully. Taylor never ever ever stopped looking lovingly into the eyes of those who looked at him with such revulsion. Taylor was the one wearing the brace, but it was others who were really trapped and imprisoned. Constrained by their own fear, restricted by their own belief that such imperfect people should not be allowed amongst us--confined by, "He's not one of us"----they missed this holy, loving human man-child longing to be free. Freely loved---by me. By You. Take off your brace.
Monday, February 8, 2010
I bought these subliminal therapy "self-improvement" tapes a couple of years ago. These Beta/Theta/Alpha brainwave messages were geared towards weight loss and improving self esteem. My dog, Murphy, was always next to me as I lay there soaking in those profoundly wordless, "I See My Body Thin" and "I Am Capable" unspoken mantras. Within two weeks Murphy had lost 8 pounds and had enrolled himself in Dogs Can Do It! I, on the other hand, gained 3 pounds and still felt like sh**.
Although I am a big fan of arguing with G_d.....at the end of the day, I have a deep belief that he knew what he was doing when Taylor was assigned to me in this life. I think he was put in my life, not so much for him....but for me. Evidently, my very own soul has some major healing that needed/needs to happen. Va-Voom! Planted. Born. Alive. Here was an imperfect, oft-rejected, divine little soul--right at my elbow. But, holy cow, I was too afraid to see it. (True confessions: I am a big scaredy cat. I hate to dig deep inside of myself and see what's really there.)
My sister told me today on the phone that, "What we judge in others is a disowned part of ourselves." I hate it when she reminds me of stuff like that. If we do not have compassion for all traits in ourselves, how can we ever accept them in another person for heaven's sake?
So here's what I've disowned in Taylor that I must really be afraid of in myself:
1. Not being smart----fear of being stupid 2. Not being included/invited--being rejected (Enough said.) 3. Not living up to expectations...I am not enough. Oh now, please don't you go and stop reading and think that this is just psycho-babble. It might be, but I also think I'm on to something. Hear me out. Don't gag. I'm almost through.
I ask you, my friend and fellow travelers: What traits do you see in retarded people/handicapped people (or any people)that you are afraid to own in your very own self?
Gulp. Help. Oh, I hate this entry. I wish she'd stick to fun stuff. I'm trying to. Heck, I'm getting ready to go watch Beauty and the Beast for the 100,000th time. That's fun. I just thought of this, no kidding: What happened to the beast when he gave and received love? What if you/I loved the "beasts" inside of our very own selves? OMG...Sing with me now from our other movie today..."I've Got Chills; They're Multiplying!" Love the beast in you. Love the beast in others. Tall order. You may now begin this test.
Sunday, February 7, 2010
Looks like we're getting down to it. You know, when you start sharing about your family, you can only tell camp stories for just so long. So, here's what I want to say. I always hated it when people told me how blessed I was to have Taylor. I hate it when people say, "Oh, God always gives those babies to such special people." Something inside of me just wants to scream, "Horse S***!"
Let me clarify.
When Taylor was born, I guess I was pretty spoiled. I wanted perfect children just like you. I expected perfect children--you know 10 fingers/toes, high IQ, good reflexes on the Apgar Scale. I could tell by the doctor's face that we hadn't done so well on that very first test. (Precursor of things to come?) I felt like I had been hit by an emotional Mack Truck. I can tell you now that I am not proud of the way I felt. But, I was who I was.
Everybody who came to the hospital--and for years to come--told us how "blessed" we were. Blessings all around. Blessings this. Blessings that. I just wasn't buying it. If I was so blessed, why was everybody crying? Finally we put a big sign on the door that read, "Please do not use the word blessings with us today." What I really wanted to tell them was that I wanted God to have their phone number. I mean, how did he get mine? Why did I pick up? I wanted God to call you--and not me.
It has taken me a long while, but now I am finally understanding that gold is mined in the dark. In our deepest wounds, there is always wisdom waiting to be un-covered. And! There are gifts from our wounds waiting to be claimed if we're brave enough to look.
So, bring on the blessings. Let 'em flow! I'm wearing my mining hat. But, let me just warn you; I am still giving God your phone number. I wonder what he'll want you for. Hmmmm. Call me. Let me know.
Yep! I bet you didn't know this, but I am God's Wife. Well, I have not received official word from THE CHIEF, but the paper work is pending I am certain. How do I know I'm God's wife? Well, heck, I have set myself up as master judge and jury of all of life. I have to help God know what's right and what's wrong---naughty or nice ---if you like to sing.
Seriously, I judge poor black girls who keep having babies. I am hard on people who are too rich or too thin---and G_d help you if you're both. I have secret disdain for people who don't work hard or who break in front of others in line. I totally dismiss anybody who drives a Hummer. (Oops! Just lost some readers!) OMG!(Yes, Oh My God) to all of those people who think they're entitled. My judgment just does not ever seem to end.
That might be ok if I were living on a desert island (with ice cream sandwiches and a naked man-----ok, skip the ice cream sandwiches) and no children to raise/influence/lead/guide/love. But I'm not on an island and it does matter what I think and what I feel. I know that my outer world really does reflect my inner world. (Spend an hour ruminating on that today---I dare you.) Everything we think and believe shows up some place in our lives. Just look. Look carefully.
Poor 'ole Taylor. Here he is this completely open, honest, pure, accepting human being and I just layer him up with my own judgments. He'll point to a store, a church, a place, an event, a club and I'll jump right in and "corrupt" him. "Oh no, we won't fit in there. And besides that, we don't like them/it." I mean, what does he know? He operates from a place of unconditional love. What in the world is wrong with him???
Oh Lord, what I'm thinking now is that it's high time I look at my judgements straight in the eye---with love, of course. Do I really need to be God's wife?
I'm just curious, faithful readers (or not faithful readers), what are your judgements? Am I alone in this? Does God have many wives---or is it just me?
Are you brave enough to share? Anybody? God's wife?
Saturday, February 6, 2010
Anyway, I don't know why I'm sitting here in my kitchen thinking that I have the market on "tragedy." Oops, that's such a pejorative (GRE) word. When Taylor was born, we actually did receive many sympathy cards--with flowers and praying hands, and gilded words that expressed such sorrow. No kidding. I'll show them to you. Gosh, I wish they had just sent me money for a pedicure. The sympathy cards sort of set the stage for what we'd be in for. When a newborn child is described with things like "suffers from" or "afflicted with" you can just imagine what kind of acceptance lies ahead. WHOA! Rough terrain coming right up.
Walking around with Taylor in Kroger or TJ Maxx or (I'm trying so hard not to say Wal-Mart---but, ok) Wal-Mart is like having my own personal litmus test next to me. A litmus test of love. A litmus test of who out there is comfortable in their own skin. A litmus test that detects when people look away, run away, pretend they don't see--because they can't allow themselves to "be with" the imperfections in their own lives. I'm going to just on record here without any PhD empirical data and tell you that 100% of blacks who we encounter always speak, always acknowledge, always extend a hand. Anybody need dissertation research? I don't know why that is, but it has been true for us.
Why do we look away? Why don't we embrace each other's scary parts? When we avert our eyes away from something that makes us uncomfortable, aren't we really averting our hearts..our own humanity? (Don't barf. Keep reading.) Come on, my brothers and sisters, what is it in you and in me that makes us scared to death of "different"? I mean, seriously, this is not something you can "catch." It's not contagious. What is contagious is just acknowledging that we're all supposed to be in this life together. It's a big boat, this life---- but it's all the same boat. Right about now I am trying so hard not to break into a chorus of KumBaYa. I can't get out my bongos right now though, because my 25 year old "litmus test" needs me to help him in the bathroom. So, wherever you're sitting, whatever you have on, could you just sing one verse--with all of your heart-- for all of us? It's a litmus test. Come By Here
Friday, February 5, 2010
When Taylor was born, I was devastated. Well, that might be a mild understatement. I was suicidal. I didn't want to be the mother of a retarded child. All I could think about was how his tongue was going to hang out. That's about what I knew about being Down Syndrome. So I secretly decided that I would kill myself--unassisted. I just didn't think we could raise a baby like him.
Realizing that I would probably not die if I jumped from the third floor of the hospital, I decided that I would simply starve myself to death. Yes, it would be a slow death, but it would be a death with dignity. I would be dead before anybody could really catch on that I starving (to death.) At 3:00 on the first day of my suicide starvation plan, one of the nurses told me that I needed to drink a milkshake because my hemoglobin was so low. Ladies and gentlemen, boys and girls: I am here to tell you that it is impossible to pass up a milkshake---especially if it's what the doctor ordered. Day one towards my very own march to death had barely begun when my unassisted suicide plans were foiled---yes....by a milkshake! It was then and there I knew that, "Damn! I'm probably going to live to raise this child. I better get busy."
On the day of Taylor's birth, the only thing I can remember the pediatrician saying in her efforts to give me hope was, "Oh, I know a boy with Down Syndrome who can sing along with The National Anthem at all the football games." Oh great. That was supposed to make me feel better? What about the SAT? What about being on the Homecoming Court? What about soccer and Boy Scouts and Little League? How do you rearrange a life's view that's been blown to smithereens? I was supposed to settle for hearing Taylor sing The Star Spangled Banner on Saturday afternoons? Yes, indeed, that's when the road got bumpy---bumpy-er.
I drank that milkshake. (Six points to you Weight Watcher folks.) My unassisted suicide took a nose dive. The pediatrician was wrong anyway. Taylor cannot sing The National Anthem. And, like the rest of us, he'll never really know what "o'er the ramparts" means. But! He can say a darn good Pledge of Allegiance....."with liberty and jet skis for all!"
Thursday, February 4, 2010
It's only taken me four days, but it's dawning on me that all of these issues about which I write don't have much at all to do with Taylor; they have to do with me. (Notice that he's not here writing about how hard his life is. I am.)
Ok, so let's talk about getting naked. I mean, getting naked and standing right in front of that mirror and looking straight on at our own nakedness. Yikes! Now add that other thing that seems to be almost impossible: Say only kind things to yourself. Only kind and loving and accepting words. Say them to yourself---
Gosh, does this make you want to throw up yet? You don't want to throw up because what you see is actually ugly---but what we're each told ourselves about our nakedness is so ugly.
OK, punchline time: Taylor loves his body. He never ever has judgement when he sees his whole body naked reflected back to him. He does not think he would be better if only..... his legs or his stomach or his fanny were different. He can look straight on--full monty--right into that mirror and not have one single judgement about who he is as a person. He can see himself naked and still love who he is. The only shame he has is what I have taught him. Ponder. Ponder. Oh S***. Yep, I'm his retarded (loving) mother.
What would we each need to know about the world within us and with-out us to love our bodies exactly as they are on this very day? What belief keeps you and me seeing ourselves--and always trying to fix things. I promise you that Taylor would look at you naked----and think---and know--that you're perfect. Can anybody out there wrap your brain (and heart) around that? Probably not. What does he know that we don't? Is there a lesson here? Why don't I/we learn it? Tell me.
Anyway, I have to go to the gym now. My legs are so fat.
Day 3. Does this mean I'm an official Blogger? Get in line. We're a dime-a-dozen.
I actually had something on my mind in the middle of the night about Taylor, but when I checked my email, a good friend had commented on FaceBook about my blog. Here is what she said, "I remember our talking after our C. and C. were born -- comparing notes and understanding and congratulating each other. I also remember after Taylor and G. were born -- remember crying, partly in sadness for you, that you had not gotten that "perfect" baby, and partly in thanksgiving that it had been you instead of me. I know that is incredibly awful to admit in public, but it is true." It's so weird. I really appreciate this comment because I know it's so true. I also know the compassion and depth in this woman's heart. I have seen it borne out in a thousand ways. And anyway, I am you. I am that other person who feels just like you. When I was young (er) I used to see a mother at Legion Pool with a handicapped daughter. I would feel physically sick and wonder how on earth--- that mother could love her daughter. I just did not know how someone could reach down into her very cell membranes and find love--and acceptance for somebody so "imperfect." Looking back...yes, always looking back....I see that it was (and still is) my own self that I am afraid of. When we see something in another person that scares us or makes us uneasy, it is always always always about our fears about ourselves. So what was I so afraid of when I saw that "imperfect" child being loved and cared for by her mother? Well, after years of therapy, I am here to tell you that I probably didn't believe that she...nor I...really was worthy of that unconditional love. Hmmm. Hmmm. Hmm.. I am wondering if you know what I'm talking about here. Do you think you have to be perfect? Do you wonder if you're not enough? Do you ever think you're in the way? These are probably my own projections but I also believe that there are millions of us walking around trying to "prove" that we are good enough---worthy enough--valuable enough. Here's what I have learned from my "retarded" son: You already are good enough. I already am good enough. Period. Thank you, Taylor, for reminding us of this.
Wednesday, February 3, 2010
Day 2 of a BLOG. Thank you for checking back. Maybe I should give away door prizes. I'll work on that. I am finding my way blindly through this. My brilliant brother told me to post this picture somewhere other than at the bottom. You know as in, "A Picture Paints a Thousand Words." If you're reading this, then you know me. Eventually, somebody in Kuala Lumpur might find this BLOG and not have a good image of whom I speak.
What comes to mind this morning as I see my followers, is how all of my life I have hung out with the smartest people on the planet. Here's my question to you: What happens when intelligence as a "value" is removed from the equation. Where does that leave us? Come on, now. Haven't we each spent our entire lives trying to get to college, get our kids to college--be smarter, be more educated, be more "degreed." It all matters out there in the real world (the world away from the computer at which you are sitting.) So, raising a son/having a son whose IQ is falls in the moderately mentally retarded range---well, that's a whole new way of trying to figure this life out. My very own thoughts about myself and about what I claim to value in life gets slammed up against a wall. Seriously, now, what is it that we believe about our own self worth? What happens when the criteria is thrown out of the window? I don't think the rest of the world has gotten my own personal memo. Maybe this is it. Maybe this is my memo: Alert!! My son is not running on the same track. But wait! Is there only one track? Just a question. Remember--or believe me when I tell you this: I was scared to death of retarded people for most of my life. I think I still sort of am. OK, it's out there. Whew.
But, here's the other reality: I have to go and take Taylor to his "training facility" where they don't train him for anything. That's a whole other day.
Here's what you can be asking yourself in the meantime: How do you see people who are different? Do you reach out and acknowledge them as real and valuable people---people who are honored for who they are? What if they are drooling? Are you still in?
Tuesday, February 2, 2010
Oh my goodness. A friend just emailed me to ask if I had seen the brew-ha-ha between Sarah Palin and Rahm Emmanuel. Emmanuel had called something, "F***ing Retarded." "In a posting on her Facebook page Monday, former GOP vice presidential nominee Sarah Palin called on Obama to fire Emanuel. Palin, whose son Trig suffers from Down syndrome, said Emanuel's language was "heartbreaking" and a "slur on all God's children."
I didn't realize when I began this BLOG (this morning!) that things would get so juicy right off the bat. I thought I could ease into this format. Not. Evidently not.
Here's my stance: I spend just about 24/7 hours/days with my son. He is precious. It's also a hard life. Caring for him is relentless. It's just the way it is. It's my "thing" in life. It's what I was given. I am allowed to say the word retarded. But, here's the rub: You're not. Well, not unless you, too, are caring for (or are) a retarded person. You haven't earned your stripes. (Gosh, there has to be some payoff. Stripes are good. Did you think there was going to be money???)
Anyway, Sarah Palin is not my favorite person on the planet. This is my judgemental self talking, but she left her newborn son to campaign around the clock for months. For being such a family person, she was not walking the walk.
This BLOG is not about SP. I just found it interesting that the word "Retarded" was an exposed lightning rod today. Hmm.
It's so presumptuous of me to think I have anything life-changing to say.
I guess I'm thinking that this blog should be worthwhile--or at least funny. It will be funny because I look at life in such a skewed way. My life is like wearing your shirt inside-out. Seams show. The stitching shows. The labels show. All of the loose strings and stains show.
I am 56. I have a 25 year old son with Down Syndrome. If you're reading this and have never met me, you're coming on in the middle of the movie. I'll try to catch you up--or not.
I decided to write this blog because it seems like every day I learn something profound (or that should be profound) from my son---who's "retarded." Ok, you just bristled. That's a word we used to get spanked for saying outloud. I used to throw up when I even saw that word. Now I live with it every day. Here's my new bumper sticker mantra: Don't believe everything you think.