Sturdy

                                                                           Sturdy

“If tomorrow morning the sky falls…/have clouds for breakfast. If night falls…/use stars for streetlights.”—If You’re Afraid of the Dark, Remember the Night Rainbow, Cooper Edens  1979

Descending from the top of the stairs, he pauses for a full two minutes, one shoeless foot stretched out straight in front of him, as if frozen in the middle of a kick-line dance.  “Come on down, Cliff. Breakfast is ready”. I watch from the landing as he gingerly puts his foot down, toe first, as though about to test the pool water.  Then, something happens that I haven’t seen him do before:  He turns himself around, Hokey Pokey style, in a complete circle before completing his descent. This seems vitally important to him, just like his habit of closing all the doors in the house and taking mail out of the mailbox one piece at a time.

News arrives via Cliff’s communication book about the scourge of the stomach virus traveling from one person to another at his dayhab program. It has me on edge. On Thursday, he isn’t quite himself. In the middle of the night, the familiar cough and roar coming from Cliff’s room has me running in to his room from a dead sleep, in time to grab a towel to catch the first of the night’s stomach contents. I am careful to not breathe, to spray the Lysol in the air between us and on every surface I believe he’s touched. I wash my hands at least a million times. But when I am that close to the front lines, it’s foolish to think there might be a different ending to the story and I resign myself to waiting for my own symptoms to start. Thirty six hours later, well…

One day when my boys were small, I took them to J.C. Penney’s portrait studio. There was someone ahead of us so we had to wait awhile. In the meantime, a dad with two children came in. When I glanced their way, it was hard to ignore the children staring at Cliff (We are used to this). After several minutes, one of the children asked me, “What’s wrong with him?” Dad pushed away the boy’s pointing finger, embarrassed, and admonished him. “That’s not polite!” I bent down to get closer to the boy’s face and gently said, “There’s nothing wrong with him. He looks a little different, that’s all.” To the dad I whisper, “Next time, it’s okay to answer his question. Otherwise he’ll learn to be afraid.”

To be completely honest, I’m not always nice when people stare. Sometimes I just stare right back. If I'm in a mood, it's a death ray. I will concede it's hard not to stare at a grown man laughing to himself in the grocery store aisles, or saying, "Halloo!" to no one in particular. Still...

These are some of the stories I thought about after I read an article about a woman who fought successfully for her child's right to ride a regular school bus and attend his neighborhood school. The school district was still in the dark ages, and opposed his inclusion. She adopted Churchill's motto--never, never, never give up--and she didn't. All these stories hold a common thread; they all are a part of the amalgam of events and realities of raising children with a difference.

There is a sturdiness to parents like us.  We do what all other parents do for and with their children; we just do it longer.  It’s like what some call “soldiering on”. We don’t even know we’re doing it until some well-meaning soul from the side of the street where the grass is supposedly greener, says how amazing we are. It’s funny, really, that someone might think I’m some amazing person when I am just me, Celia, who grew up in a modest town, in a modest home, with a modest intelligence and the kind of shy temperament that kept me on the outside looking in. I’ll tell you--you learn things when your kids turn out differently than you once daydreamed about. You learn that every day your child wakes up and is here, it’s time to bring that day up to the level he or she deserves; you’ve got to make the noise required to speak up when a child can’t; you must put your heart and soul into it. There isn’t another option. We owe our sturdiness to a steel will born on the same day our child was born or diagnosed or injured, the one that built up from that time on, instilled by God, whether you believe in Him or not.                                                                  

There’s no magic in it. It isn’t heroic. It’s simply putting one foot in front of the other.

 I like to think I do it with flair, a little like Cliff descending the stairs.

Apology

“For everything I do that will tear at you, let me say I’m sorry now.”—Shawn Colvin

Dear Max,

I’ve written you letters before, most often when I had something on my mind that bothered me, or when I was angry. I have not always shared them with you, however. Sometimes it’s best to get it down on paper and then keep it to yourself. Whether you give away your words or not, writing a letter has the potential to make thoughts and troubles so much more clear. This letter, you are going to think, is ridiculous. I can hear you saying, “Mom, it’s okay. I’m over it!”

Look, I’m the type to beat myself up; there’s no changing that.

The other day, I submitted an ad to your sister’s yearbook, one of those pages in the back where parents place pictures of the graduate as an adorable toddler next to the full-grown picture. I also wrote a poem. A poem! I haven’t written a poem since college. $135 later, after I clicked the “send” button, I felt the familiar sting I experience each time I recall that I never put an ad in your yearbook. Back then, I forgot to check on the due date for senior ads and, by the time I inquired, it was too late.

I still feel guilty about that. In the 2009 Franklin High School yearbook, there is no half- page dedication to you. No photograph appears of you at age three, wearing nothing but a diaper and mom’s cowboy boots, or of the one- year- old you wearing that crazy powder blue “mushroom” hat with your thumb stuck in your mouth. I never wrote the words that would always remind you of how proud I was, of how far you’d come.

Listen, I need to say these things now because someday you and Cliff and Olivia will be sitting around looking at your yearbooks when I’m dead and gone. The other two will be smiling at their $135 ads, and you will peer over at them and say, “Hey, how come I never got an ad?” You’ll be under the mistaken impression that I loved you less and that just isn’t true, not by any stretch of the imagination.

In my defense, you never told me the due date for the ads. You’re the one who sat in second period class listening to the announcements. Not me.

At any rate, given that righting this wrong is not possible, I decided to write something here in this very letter, that I might have written in your ad.   Let’s see, it would have had to be something that would not embarrass you, words your friends wouldn’t throw in your face, laughing as you sat around the campfire at night drinking beer and smoking Marlboro 100’s. It would have to look cool so I would have had that picture of you with your skateboard. You know the one. I love that picture. Somehow I would have had to express in fewer than a couple hundred characters, how we felt about the son for whom we waited so long, the child we thought may never come because God decided to make it as difficult as possible. Or what it was like to hold you in my arms, wrapped up so beautifully like the present you were. How could I tell the story of you in just a few words? About every struggle and the triumphs that arrived after? About your handsome face, your gorgeous smile and hilarious, somewhere- out- of- left-field observations?

But try I must.

                                                          Maxwell James Taylor  Class of 2009

We are so proud of you!  Congratulations to our son and brother!

 Love, Mom, Dad, Cliff and Olivia

Yeah, that would have been the whole thing, Max. I mean, let's be real--anything more than that would have had you tearing that page out of the book. Your friends' books too. I guess you’ll just have to read between the lines and appreciate the subtext.

Love you,

Mom <3

PS. Please bring the garbage cans back in and don't forget to feed the dog.

I Believe

There's nothing sadder in this world than to awake Christmas morning and not be a child. - Erma Bombeck


In the dark of a December night, the silhouette of three figures backlit by the porchlight is part of the unvarying landscape of Christmas Eve. If someone were to amble by, from their vantage point in the road they would just be able to make out the two taller figures helping the other to toss a mixture of oats and glitter out onto sleeping winter grass. There are reindeer to first, be guided here by the concentrated glimmer in the yard, and then fed once they land. The three stand huddled together, shivering but unfalteringly bent on completing their mission. Flakes the size of half dollars drifting down or an already hard, snowy ground, bitter chill or unseasonable warmth, the occasional moonless night or a waxing gibbous moon, are the only variations. While the weather may differ the ceremony is the same year to year. The taller ones laugh as their brother takes a handful of oats from a small plastic bag and throws it overhand, where it lands just short of the grass. They move as a unit further into the yard and toss small piles until the bag is empty. They're having fun, and the one is reluctant to come in, reveling in the attention of his siblings, and saddened at the too-short duration of the tradition of so many years.

Although Max and Olivia have long outgrown their belief in Santa Claus,  Cliff persists, mostly because we haven't told him any different. It just never seemed necessary. There are two schools of thought on this subject. The first is the one we've maintained since he could understand the concept of gifts appearing out of nowhere, from a big-bellied grandfatherly guy with a beautiful, snow white beard. Before he goes to sleep on Christmas Eve, we still read books with red-hatted animals gathered in friendship around a tree, or children gazing into toy store windows on the cover. We still sing most of the 12 Days of Christmas, and he still looks about to burst when I tell him Santa is coming to leave him presents.

Then there are those who believe it's disingenuous for a grown man not to know the truth. They think it's somehow offensive, and makes him look, well, developmentally disabled! At the core of it is that it might somehow reflect badly on what the world thinks of their sons and daughters with Down syndrome. That perhaps they will forever be looked at as children, no matter what their age. (Of course they are not children forever and should never be treated as such) But, and here's a fact you may not know, each person with Down syndrome is an individual. Each has his or her own personality, quirks, likes and dislikes, beliefs and preferences, abilities or lack thereof. I don't believe I'm treating my son like a child because we allow his fantasy of Santa Claus. He's a young man with childlike qualities. That's one of his quirks. We should all be so lucky.

The sameness of Christmas Eve extends to Christmas day, during which Cliff opens presents perched cross-legged on the couch as we hand them to him. He can't read his name on the gifts, requiring each of us to search and deliver a couple at a time. It's really terrible how spoiled he is. The gifts are the things he gets every year, just updated versions of them. A new Koosh ball, DVDs, shirts and sneakers, books, a photograph album, the newest communication device intended for folks who are mostly non-verbal.

The gifts opened, breakfast ensues with his usual eggs, fruit and one mini-coffeecake. He dresses and waits for the rest of us to begin the trip to Grandma and Grandpa's house three hours away.
On the way out the door, he throws his arm around my shoulders and pretends to scare me. "Boo!"
"Ahhh! You scared me!" I exclaim, feigning fright. He laughs and then it's my turn.

To the few who disapprove, I say you have to meet people where they are. It's necessary to accept what is, instead of forcing someone to be a version of himself that isn't true.

The familiarity of these hours together, the sweetness of an innocent fantasy we hope will never end--it is most precious. He still believes so that the rest of us can believe too.

God bless and Happy New Year.

Lessons

"If I can stop one heart from breaking/I shall not live in vain/If I can ease one life the aching/or cool one pain/or help one fainting robin/unto his nest again/I shall not live in vain." --Emily Dickinson


A few weeks ago, after a local Junior Miss competition which my daughter did not win, she came home in tears. She was okay with not winning, but the pain on her face was from another, more devastating source. The friends who promised to come and cheer her on did not show up. Even the friends who have been with her through high school didn't come. For reasons only God knows, they didn't comprehend the importance of this occasion. Still wearing her competition- white flowy dress with silver sparkles and strappy high heels, she cried with the loss not of the competition but of expectations and loyalty. I thank God for Paige and Cianna, Olivia's best friends in the world who did come, helping our family to form a small but devoted fan base. I don't know why her other friends misunderstood the enormity of this important event in Olivia's life, but I do hold out hope that it will forever pain them once they grow up and reflect. (Kind of like my sister, Cathy, who still winces when she remembers the college memory of telling a perfectly nice girl arriving with suitcases and pillows that she didn't want a roommate. Oh the sting of rejection that girl must have felt!)
 To be sure, if it had been one of them in the competition, Olivia would have moved heaven and earth to be there. I reminded her that it had more to do with their issues and failures than with anything attributed to her.
The next day, she had already forgiven them. She is a better person than I, because I gave some serious thought to finding them and describing Olivia's tear-streaked face and her voice as she choked the words out, "My friends didn't come". My finger wagging in their faces, I imagined saying something I'd regret like, "What the f--- is the matter with you?" They made my kid cry and I don't forgive that easily.
There is nothing in the world more painful than seeing your children hurting.
One summer day when Cliff was ten years old, Ken and I had Cliff and Max outside playing on their riding toys. We lived near Albany at the time, and got along with all our neighbors. Next door we noticed a car in the driveway, stopping long enough to deposit a little boy carrying a festive-looking birthday gift and a sleeping bag. Before long, there was a parade of cars and boys bearing presents and knapsacks. My neighbors came out and greeted each one, the boys tearing off to the balloon-stocked backyard where a Bouncy House sat, with its red and yellow turrets and green bouncy slide. It was only the crowning epitome of birthday fun, and I don't have to tell you how longingly my kids looked at it. The entire time, Cliff stood facing Brandon's house, mesmerized by and smiling at the joyful shouts of kids and celebratory inclinations. I watched his smile fade with the slow dawning of understanding: His friend Brandon was having a birthday party and Cliff was not invited. I understood that Cliff probably couldn't handle a sleepover, but for God's sake, couldn't they invite him into the Bouncy House? Had him stop by for a piece of cake? Really, how hard could that have been? The choice they made forever changed the relationship we had with them. The mother has been dead for many years now, but I still struggle to forget what she did.
Naturally, no child is immune to disappointment. When I recall the time Max had a birthday sleepover with four friends for his tenth birthday, I push the thoughts away. I can't bear it. The story goes that Max had a fun time with these boys during the afternoon and had looked forward to having them pile into his room for a sleepover. There were games and popcorn and the expectation of staying up late. But around 8:00 when one of the boys realized he missed his mommy, I had to call her to pick him up. Well, that started a firestorm of three more upset boys, thus forcing the party to end prematurely. I hate that I remember Max's look of disappointment. When I bring it up, Max tells me, "Mom, I'm over it!" (He's 20 now)That helps a little.
I've spent so much of my life with my kids trying to protect them from hurt, even though I know the impossibility of this particular assignment. And with the passing of years I understand there is no protection, no exclusion from disappointment, no possibility of walking through life unscathed. It's finally sunk in that every life event, whether it's filled with sadness or with joy, devastation or victory, it is all necessary for growth. These things must happen in order to help us bear up when we have no one but ourselves to depend on. How does one learn to cope without having experienced pain?
Meeting challenge with strength. That sounds good to me.  If they can take away the lessons learned from disloyal friends, the cruel intentions of neighbors, or the disappointment that stems from a failing grade or a lost competiton, they'll hopefully avoid plunging into the depths of despair.
And perhaps I won't have to dwell quite so much on just how much I want to slap someone's face.

"Our life's a stage, a comedy: either learn to play and take it lightly, or bear its troubles patiently." Palladas

Sleep

"How blessed are some people, whose lives have no fears, no dreads, to whom sleep is a blessing that comes nightly, and brings nothing but sweet dreams." - Bram Stoker, Dracula

For two weeks and two days, I hadn't slept in the same bed as my husband. For sixteen nights, sleeping in my own room was not an option. It had nothing to do with the state of our marriage, but rather the very unique situation of living with a 26-year-old intellectually disabled son who was afraid to sleep in his own bedroom. I had no earthly idea why. Nor did I know what to do about it.
The first night, Ken was away on business and I thought Cliff had simply had a bad dream or perhaps missed his dad. So I allowed him to stay with me and he drifted off nightmare-free. But the next night, he refused to leave my room. My tired husband, arriving home at 2 a.m., observed the kid in the bed and resignedly made his way to the couch downstairs.
Each night after that brought its own set of challenges, none of which led to an end to the standoff. At first, Cliff would not even go near his room. Coming out of the bathroom after brushing his teeth, his body turned left instead of right. It walked him right into my room, no matter what I said. We were firm. ("Cliff, it's time to sleep in your room tonight.") We threatened. (Mommy is going to be mad if you don't sleep in your own bed!") We pleaded and cajoled. ("Could you please, please just try to stay in your room?") He would give me a baleful look, eyebrows furrowed, at once sweet and stubborn. Bedtime had become a battle, and I suddenly seemed to have a 5-foot toddler. His "No!" answer to every, single, solitary thing I said had the tone of someone who was responding to a request to eat an earthworm. Sometimes I said nothing, using sign language (Time. Bed. Sleep.) with the same results.
One night, about a week after the standoff started, he agreed to go into his room. He sat on the bed, his eyes darting fearfully around the room. Undaunted, I started out softly speaking about sweet dreams and how everyone has to sleep in his own bed and boy,oh boy, mommy missed her bed and (as he slowly began scooting off the bed) Hey, where are you GOING? THIS IS RIDICULOUS, CLIFF! YOU'RE 26 YEARS OLD! DO YOU SEE MAX OR OLIVIA SLEEPING IN MOMMY AND DADDY'S ROOM FOR GOD'S SAKE?" He looked at me, temporarily suspending his progress and gave a frustrated huff.  Sighing, I decided to lie down at the foot of the bed, hoping he'd drift off and remember how wonderful sleeping in his own room could be. Instead, I drifted off and before I knew it the scooting was complete and he was off and running.
At the core of this new and concerning behavior was fear.  Knowing this, I wanted desperately to understand his refusal to go to bed in the room he's had to himself for the last 12 years. I was frustrated to be sure, but imagine how frustrated he was! Imagine having the language but not the speech to say what you are thinking! While I understand his thinking most of the time, other times he's like a lidded box with a padlock and I don't have the key.
This isn't the first time his behavior has defied explanation. When he was 18 or 19, he refused to eat solid food. He would push his plate away and leave the table. The dentist found no cavity or mouth sore. The doctor was stymied. For three months, Cliff would eat only soft foods and liquids. Then one day, he simply started eating normally. Damned if I know why.
More recently was the phase during which he couldn't walk unaided, always taking someone's arm to walk across a room or across the driveway to get onto his van. At Special Olympics, the only way he would run his practice races was by holding onto my arm or the hand of one of the coaches. His fear of what I assumed was one of falling, prompted a trip to the eye doctor. Peripheral vision failure? Then we were off to the podiatrist for an evaluation of his feet and gait. All checked out fine.  After a year and a half, whatever fear he was grappling with gradually dissipated until he was walking, jumping, running without hesitation.
So, I had resigned myself to sleeping in Cliff's room, pinning my hopes, based on his history, on this too being a phase; we just had to wait it out. There are worse things, I suppose, than having a comfortable bed all to myself.
Then, one night, after Cliff had gotten settled in my room and had dozed off, I went downstairs for awhile. (A glass of my favorite cabernet had become one of my coping mechanisms.) When I came up an hour later, I found Cliff in his room, asleep.
And just like that, with no explanation and after 16 puzzling nights, my son had decided it was time to sleep in his own room again. In the morning, he awakened to see me standing there. We smiled at each other and I sang a silly song. All was, once again, right with the world.
This is life with Cliff. Puzzling, and at times frustrating. Ken likes to call Cliff a mystery wrapped in an enigma. What can I say? Cliff's a quirky guy. This is also life with Cliff: amidst  the odd phases and the stubbornness there exists an exuberance for life, an absolute appreciation for the simple things of the world, a willingness to love deeply and purely without reservation or condition, and always forgiveness of my failures to understand. Love, magnified.

The End

"I am not resigned to the shutting away of loving hearts in the hard ground./So it is, and so it will be, for so has it been, time out of mind:/Into the darkness they go, the wise and the lovely. Crowned/with lilies and with laurel they go;/but I am not resigned."--Edna St. Vincent Millay


Today is the day I have been dreading for months. You may laugh, but you had better not let me hear you when I tell you why. Today is September 23, 2011, the day of the last episode of my soap opera "All My Children". It's going off the air after 41 years. It is proving to be one of the saddest days of my life, and each time I contemplate its end, I cry.

As a freshman in college, one day I walked into the student lounge to warm up and to relax before my next class. I sat down with about twenty other students and joined them in watching the soaps on ABC. I watched them all: All My Children, One Life to Live, General Hospital. But the one that I became hooked on was AMC. I was 18 years old.

In the ensuing years I watched it on and off, then mostly on once I could afford a VCR and could watch it after my job teaching English to middle schoolers. Sometimes I was exhausted but I never wanted to miss an episode of Erica Kane slapping someone across the face, or Tad the Cad bedding Dottie or Hillary or Liza and her mother. There was the time Erica yelled at a bear in the woods and scared him away. "(Go away, bear. I am Erica Kane!) I was mesmerized by the love stories, the way they took on social issues like AIDS and abortion. The characters came and went. Some of them I missed, some not so much. I watched through good writing, bad writing, and characters who came back from the dead. There were switched baby stories and people who got married to someone new every couple of years. God, I loved the silliness of it, the oftentimes banal banter of characters who never seemed to learn from their mistakes. But it was also a smart soap opera with a lot of heart. It was pure escapism and I have been watching, and escaping, ever since.

Naturally, watching one show from the seventies to now, one could call me obsessed. Certainly anyone who knows me well, knows AMC is the show I'd choose if I could choose only one show to watch for the rest of my life. They also know my devotion to Susan Lucci. I have the books, the dolls, the perfume, the jewelry, and the Malibu Pilates chair to prove it.

I write this as a warning to my loving family and friends, especially as they may be unsure about what to do and say to me today, of all days. After all, I am about to lose my best friends, the routine of some thirty-odd years, and my daily devotion. I will tell you that if I hear an "Oh brother", or see an eye-roll or smirk, if I sense that you think this loss is no big deal, you'd best avoid me altogether.

If you can't understand, perhaps I can help you. Think about spring--spring after a long, snowy, dark winter. What if spring ceased to exist? What if you knew you could never again see flowers bursting from the ground? Or hear birds noisily chattering in the boughs of leafy green trees? What if the sun ceased to shine on your face? Would you miss it?

What if, in some insane nightmare, there were no more books? They just disappeared from the whole world? Or, for my sports-minded friends, what if the Yankees or the Red Sox broke up, and all of baseball went away? How would you feel then?

Stop saying I'm being ridiculous. Just because you don't care what happens when 1:00 comes around Monday through Friday, doesn't mean it shouldn't matter to me. I want you to know that if you can't say, "Celia, ( or Mom)I'm so sorry your show is gone. I know how much you've loved it all these years.", then don't say a damn thing to me.

At 1:00 today, I will go into my bedroom and shut the door. The t-shirt I'll be wearing says "Pine Valley University, est. 1970". I will watch the very last episode of my show and, at 2:00 I will be inconsolable. So just leave me alone.

Because if I hear so much as a snort or a sigh when you see me with tears in my eyes, or if I see in your face the slightest evidence of pitiful, trust me when I say I will slap you across your snarky face, and I'll do it Erica Kane style.

Beautiful

"She walks in beauty, like the night/Of cloudless climes and starry skies/And all that's best of dark and bright/Meets in her aspect and her eyes;/Thus mellow'd to that tender light/Which Heaven to gaudy day denies/"--Lord Byron

"Well, she was just 17. You know what I mean. And the way she looked is way beyond compare."--The Beatles


The door opens and she walks into the house, no, makes an entrance into the house, all soft-curls and perfectly straight, white teeth, and says in greeting, "Hey". Not the typical teen-age "hey" dedicated to boredom, or disinterest or feigned exhaustion; this "hey" has a more sing-songy, multi-syllabic quality. She has announced her arrival. Each time she breezes into the kitchen reminds me of effervescent champagne bubbles. Sparkles in diamonds. Lights, camera, action.

There are times I look at my daughter and wonder where she came from. She seems to have none of the awkward shyness of her mother at that age. In place of the paralyzing inadequacies of my high school years, I see in her the qualities I always wished I had had. Confidence, contentment with who she is, a general loveliness. How different my life would have been!

She can get up on a stage and perform, or stand in front of a classroom and give a speech without feeling faint. There are exactly, as of this writing, 2,640 pictures of her on her Facebook page. Many of them are those iconic teenage photos that one takes of oneself while holding the camera skyward, at arm's length. It seems to me one snapshot is more beautiful than the next.

Why, then, are there often days when her view of herself is so critical, it pains me to hear it? She's announced plans to get a nose job when she's older. I don't know if that's before, after or at the same time as the chin implant. My response is to roll my eyes at her pronouncements that she isn't good enough or pretty enough the way she is. I don't understand because all I can feel when I look at her is wonderment.

It seems like this is the road our daughters are on, on that trajectory forced on them by the media, by a society which values physical beauty over inner beauty. It's almost impossible for me to find the right words to convince her that she is beautiful enough, smart enough, talented enough.

Then I remember the times when I have felt most beautiful and the most confident. And I have the answer. The answer is this: It's love that makes you beautiful.

I remember once, when I was in my twenties, asking a former boyfriend if he thought I was the most beautiful girl in the world. It was a test that my father taught me. If he said yes, then I would know he loved me. If he said no...well. So I asked him and he replied, "What, are you asking if you are more beautiful than say, Christie Brinkley or Cindy Crawford? Now those women are beautiful!"

Clearly, I wouldn't have considered marrying that one. I did, however, marry the man who does tell me I'm more beautiful than any other woman. He makes me feel like a Victoria's Secret model sometimes! It's love that makes him think so.

There has never been anything more true. You are beautiful to everyone who loves you. Love makes you beautiful, Liv. That's all you need to know, all you need to believe.

http://www.youtube.com/watch?v=2FMtxACKlYM (Watch and learn)