Friday, December 23, 2011


"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

Thursday, October 27, 2011


"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.

Friday, September 23, 2011

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.


"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. (Watch and learn)

Tuesday, May 17, 2011


"To everything there is a season, a time for every purpose under the sun. A time to be born and a time to die..."   Ecclesiastes 3:1-8

I saw it on Facebook just the other day. It seems to be the new way to find out someone you know has died. I would much rather have preferred a phone call, the way one used to find out such sad events. The picture of her was accompanied by a post, stating that "yet another one of God's angels is gone from my life. Rest in peace Diane." The photo, added by Jen, who works at the group home not far from my house, was a little blurry, but there was no mistaking that face, that expression. The background showed the red and white of the track at a local high school, where I last saw her, where her caregiver was trying to talk her into throwing the softball and running the 50-meter race. She would have none of it. It always took her some time to acclimate to new places and activities. But she usually agreed, when she was good and ready, and after being promised her beloved ice cream.

Her face, her beautiful face, accompanied by the ever-present head band holding back her thinning brown hair, was the face of my friend, Diane, who happened to have been born with Down syndrome a little more than 50 years ago. I first met her at the group home where my friend, Richard, lived. Diane approached me then, and I was warned by her caregivers that she sometimes pulled hair. I obliged when she came in for the hug, knowing I was taking my chances but hoping for the best. She didn't pull my hair that first time, but eventually she did! It might have been the third or fourth time I visited. It was funny, actually, the way the caregiver admonished her and ran over to me to help me extricate my hair from her fingers. When she let go she had a smile on her face, as if to say, "Ha, gotcha!"

After Richard died, I continued to see Diane, though infrequently and mostly at the park or when Cliff and I attended the Special Olympics practices. Even after a long absence, she would say shyly, "Hi Cee-ya!", making me wonder at the Alzheimer's diagnosis the doctor gave her last year. She always knew me.

The day I found out Diane had passed away unexpectedly from pneumonia, I cried because I was so very fond of her. And she was gone too soon. She was funny and stubborn, fun-loving and sweet.

She was, come to think of it, a lot like Cliff. I will always miss her.

When Cliff came home from work on the day I found out about Diane, I held onto the hug a little longer, tried a little harder to make him laugh, listened to his loud, off-key singing a little more patiently. Whenever I looked at him, it was impossible not to think about Diane and Richard. Impossible not to think about life expectancy, and the pain I sometimes feel when my imagination goes wild.

That's where faith comes in, I suppose. Faith that all is as it should be, and that there is love, always love.

Friday, April 22, 2011

Sleepless in Franklin

"Adolescence is perhaps nature's way of preparing parents to welcome the empty nest." ~ Karen Savage and Patricia Adams

The timeline: Thursday afternoon

4:00 pm Max has left the house before I get home from work, without telling anyone where he's gone. I assume he's with his friends Andrew and Chris. It's spring break at his college and he is still in "I-don't-have-to-tell-anyone-anything-if-I-don't-want-to" mode.

7:00 pm We eat dinner without him, which is not unusual.

11:00 pm Time for bed. Ken and I fall asleep easily, confident that Max will be home at a reasonable hour.

1:30 am   I wake with a start. Something doesn't feel right. Looking in Max's room, I see the empty bed and quietly walk downstairs to see if he's fallen asleep on the couch. No one is there. My text to him is: " It's late. Come home now." But I get no response. I'm having trouble keeping anxious thoughts at bay.

1:45 am  Back to bed. Ken is awake now. Sleeping is an exercise in futility, knowing our 19-year-old son is out late and unreachable. Where the hell could he be? Worrying begins in earnest.

3:00 am  Ken's turn to call Max. He leaves him a message because Max's phone seems to be off. "Max, where are you? It's 3 o'clock in the morning. Please call home. We're worried about you. Just let us know where you are."

3 am to 5 am Our imaginations have gone wild. He's dead in a ditch. He's passed out from drinking. Someone has beaten him and left him for dead behind the mini mart. He has to be hurt. Otherwise why wouldn't he call?

5 am to 6 am We're exhausted from lack of sleep, so we make coffee and hope we'll make it through the work day. I say a prayer that sounds like a mantra: "Please let him be ok. Please let him be ok."

6 am Someone must be up at Chris' house by now. Chris' mother checks his room. "No, Chris is home. He got home early last night. He says he hasn't seen Max since late afternoon yesterday." My heart is pounding as I dial Andrew's house. "Andrew says Max hung out with someone named Kamali last night," Andrew's mom says with concern in her voice.

6:15 am Ken calls Kamali's house. Kamali is a young man Max knows from school who lives in the next town. Kamali's parents haven't heard from their son all night either. But we learn they went somewhere together last night.

6:30 am The house phone rings. It's Max calling to say he's on his way home. His phone died yesterday so he's calling from Kamali's phone. Now I ask you, why couldn't he do that before his parents waited up for him all night?

7:30 am Max walks in the house. "Hi, Mom." Just like that. As if nothing much has transpired in the last eight hours that didn't take years off my life. I don't know whether to hug him or strangle him. I opt for neither. "Don't even talk to me, Max." He sheepishly retreats to his bedroom to get some sleep.

2:20 p.m. I come home from work, calmer now. My son walks into the kitchen. I stare at him for a moment, hands on my hips, hoping I am having an unnerving effect on him. "Why didn't you call to tell us where you were? And by the way, where were you?" I find out he was at a party an hour from home (it was St. Patrick's Day) and was too tired to drive back (i.e. he had been drinking). He makes the unbelievable and preposterous claim that he texted me after midnight to ask if he could stay over and that I texted him back with just one word: No. I tell him I never received such a text so I couldn't have texted him back. And anyway I NEVER would have said no. How many times have I said I don't want him on the damn road if he's tired or had been drinking? How many times have we had that conversation since he started driving? I'll tell you: more times than I can count.

2:25 p.m. I have forgiven him, but I don't plan to forget. In fact, I plan to bring this up as often as possible to make him understand that we are happy to give him the freedom he wants, with some reasonable constraints when he's home from school. I tell him to please not do that to his parents again, that we can't go through a night like that again. At least not until Olivia starts pulling this crap too. Hopefully I have a couple of years recovery time.

A week later we are sitting in a restaurant with Kamali and his parents to discuss a possible move out of the dorm and into a house near their school. I can't help but bring up the events of the week before. When I tell them I thought they were dead in a ditch, they thought it was hilarious. I laughed along with them, but I don't tell them about the terror I felt that night. It was not the time or place for it. I couldn't tell them how, when I don't know if he's okay, my mind goes to the unimaginable, the most awful place for a parent. Life stops and nothing can make it continue, nothing can make it all right until I hear his voice.

People tell me not to worry about things that are out of my control.Well, shoot, Life is out of my control! How can I not feel scared?  I've seen the bumpersticker on the cars of the faithful, "Let go and let God." I hate that saying. First of all, it's grammatically incorrect.Where is the second verb? Let God what?  Second of all, isn't that what's happening anyway? God is in charge and is making all the decisions.

My eye doctor told me that the twitch in my right eye is due to stress and lack of sleep. He suggested I take half a valium before bedtime. I'm strongly considering it. That way, if someone doesn't come home, at least I won't know until I've had a good night's sleep. Works for me.

Saturday, March 26, 2011

Birthday--Part II

(I insert a helpful note here: You should really read "Birthday" from my February 28 post before you read this one! It's a continuation of the story that began that day.)

"Memory is more indelible than ink." ~Anita Loos

Part 2 is a little harder to write about. There were words spoken and thoughts thought that day that don't remotely reflect where I am now. Even though I know that my 27-year-old self is miles from my 53-year-old self, some things are painful to revisit. In fact, I still admit to a million internal admonishments about that time. I prefer not to think about them. But here is what else happened the day Clifford Anthony Taylor was born:

Discovering my new baby had Down syndrome was a relief, given that I thought there was something truly life-threatening going on. The pediatrician, in his wisdom, had asked Ken if he wanted to give me the news or if he wanted it delivered by a doctor. Ken's decision to tell me himself was just one of so many things he did that I consider a gift.
I lay exhausted in recovery when he came into the room with tears in his eyes. He spoke the words that I know must have been so difficult for him to say. "The doctor isn't sure, but he thinks the baby has Down syndrome."
Almost immediately, my mind went to Ken's cousin, Mary. Mary was in her twenties at the time, a delightful, lovable young woman. And Mary had Down syndrome.
In my shock, I needed to explain what was happening to me, to understand why, of all the new babies in the world, mine had a chromosomal abnormality. I wanted to blame someone. For just a moment while I took in this unbelievable news, I blamed Ken. I thought, it must have come from his side of the family. It was his fault. But at the same time, I was horrified at my own thoughts. I looked into my husband's eyes, beautiful and blue and absolutely devastated. I told him, "We can't blame each other for this. " It was as if, by saying it aloud, I quieted that destructive, absurd thought in my head.
And I was afraid he might blame me.
Of course, it was never anyone's fault. It just...was.
Later, as we took turns holding him, I thought about the name we chose. Clifford was the name of Ken's late father. We had assumed our first son would carry on the Taylor name. It's such an old-fashioned notion thinking back on it. Nonetheless, this child would not be the son to do that. Should we name him Clifford as we had planned?
My uncertainty didn't last long. Ken and I  looked at each other and smiled. Clifford was the name he deserved. Grandpa Taylor would have been honored to know this grandchild would be named for him. This baby was perfectly perfect and deserving of the name of a man who, by all accounts, was a good, loving man and a wonderful father.

People are fond of saying that "kids like these only go to the most special parents." It's a sweet sentiment, but we were just normal people, imperfect like everyone else. People also like to tell us Cliff is a lucky young man. I would counter by saying we are the lucky ones. If I'm going to be truthful here, it isn't always easy. But the good stuff far, far outweighs the difficult stuff. Of that I am sure.
Twenty-six years later, I can honestly say to people just absorbing the news that their unborn child or their newborn child has Down syndrome, that there is no tragedy here. Rather, it's an opportunity to transform yourself into the best person you can be. Accept that some things were meant to be, and someday, you'll wonder what you would have ever done without the child you never expected, but who found you anyway.

Postscript: Studies done since Cliff was born point to the mother being the parent who donates the extra #21 chromosome. The percentage is something in the 90-ish range. So there you go. :)

Monday, February 28, 2011


"On the day that Cliff was born, on the day that Cliff was born, on the day that Clifford was born the angels sang and they blew on their horns and they danced, they danced. They smiled and raised up their hands on the day, on the day that Clifford was born." -- Red Grammer, "Hello World"

It's early on this February morning, and still a little dark, about the same time I awoke twenty-six years ago in labor with my first child. I am doing what I always do on this day each year, remembering the events of the day that changed my life in such profound ways that I am still discovering how. I've told this story often but each time brings a welcome recall, albeit bittersweet, that I hope I will never forget.
Early on that February morning, while I let Ken sleep, I got up and decided to take a shower with the foolish notion that I'd look prettier for the work ahead. I had everything set: snacks for my husband in case the labor went on and on, my bag packed and sitting by the door, the camera, the baby announcement cards I planned to write out after my baby arrived.

But you know what they say about God and the plans we make. Only I don't think God was laughing that day. I think, in fact I know, he had his arms around me saying, "Don't worry. I know what I'm doing. I am with you."

After just six hours, Clifford Anthony Taylor arrived. He was named Clifford after the grandfather he would never meet. Anthony was for my own dad. He entered the world just like any other baby--squalling loudly, a beautiful sound we captured on tape and still listen to from time to time with tears in our eyes. That tape captured not only the brand new cries of a baby boy, but the voices of my husband, the doctor, the nurses. In fact, I distinctly remember the nurse who abruptly left the room soon after Cliff was born. She had been my birthing instructor and I was so glad she could be there. On the tape I can hear her saying, "What a beautiful baby, " and then the glaring absence of that voice. I found out later that she was newly pregnant with her own baby and became upset when she looked at Cliff and saw something a little off-kilter. She knew.
When Ken left the room, I recall asking where he went. "We think there may be something wrong with the baby so your husband is speaking to the pediatrician."
Something wrong? Is that what he thought of my baby? He knew the truth before I did and he used the word "wrong"? How awful for a doctor to use such a word. Wrong means the baby is sick with a disease. Wrong means the baby might die. Wrong means something horrible and tragic. My son's birth meant none of those things.
When Ken came into the recovery room he gave me the news. He held my hand and said, "The doctor thinks the baby has Down syndrome, but they have to do a blood test to be sure." I stared at him as relief flooded my face. The doctor had said "wrong". But  my baby was healthy. Down syndrome? The meaning of those words had not yet entered my brain. At that moment I cared only that he was not ill or in danger of dying.
Later in my room, as Ken and I discussed what this all meant, I realized that I had been waiting for over two hours to hold my son. Looking back, I honestly believe the nurses were told to wait until I asked for him, just in case it turned out I didn't want him.
Can you imagine?
I'd like to tell you every thought that went through my head when he was finally put into my arms, but there was only one. I loved this baby! As I gazed at his little face, he suddenly opened his eyes and at that moment I was sure of two things: I didn't need a blood test to know what was right in front of me. And he was mine to keep  forever.
We lay him gently on the bed and carefully, slowly unwrapped him. We marveled at his perfection: the ten fingers and ten toes, the soft brown/blonde hair on his head, the full lips, the roundness of his belly. I thought I knew what love was, but this...this was beyond my imagining.
I hadn't yet cried. That would come...later. be continued...


Friday, February 25, 2011

New Normal

"Where we love is home--home that our feet may leave, but not our hearts." ~Oliver Wendell Holmes Sr.

Used to be I would lie in bed awake, waiting for the sound of the garage door opening. I liked the sound. It brought me peace. It meant that Max was home safe and that I could sleep without startling awake, wondering where he was. Even without the sound of the door opening and closing, I could tell when he was here. He has this way of bounding the stairs, doesn't matter up or down, and taking two steps at a time.  No one else in this house comes in quite like he does. His arrival is as unique as a thumbprint.
From my vantage point, lying in bed with my door ajar, I could even tell it's his hand putting on the bathroom light in the hallway, just the way he does it, with his full hand flat and covering the light switch. He flips the switch between the second and third fingers on his right hand. Is it weird that I know that? It's funny that I could know these small details considering how little I know about what's going on in his head. But kids aren't always supposed to tell you every single thing they're thinking. I discovered a long time ago that our kids have a secret life, apart from what we've known. 
He's the least talkative of my three children. I'd throw out the term "typical guy" here, but I don't think there really is such a thing. I just know that when he does talk about what he's thinking, I am like a soldier! I snap to attention and listen carefully because he doesn't like to say things twice and besides, he lets out his news and information so infrequently, I'm practically starved for his conversation.
He's away at school now and each one of us in this house feels his absence in his or her own way. I miss the way he leaves his fingerprints all over the microwave when he cooks up his Jimmy Dean breakfast sandwiches. I miss him asking ,"Mom, have you seen my work shirt? my wallet? my phone? Can you help me with my earring?" I miss the way he leaves the house and comes back in three times because he's forgotten his wallet, his phone, his iPod. I miss the way he hugs his big brother and jokes around with his sister. I miss the way he'll ask me for permission for something instead of going to his father because I'm the permissive one. 
I've been wondering if I will ever get used to this. How long will it take? Does one ever get used to children leaving? It's the future of every parent after all. After Max, it will be Olivia. Then someday, Cliff, who will need to find his own life before his parents leave this world.
I have to tell you, I miss them already.

Monday, January 17, 2011


"If a perfect parent is not what a child needs,what is? A mother who is, in the words of child psychologist D.W. Winnicott, 'good enough.'" --Brie P. Quimby, from Changed by a Child, Barbara Gill

Bath night is every other night. I wash his hair, brush his teeth, dry him off.  In the morning I shave and dress him, make him breakfast, clean up after. He gets a pill in the morning one half hour before breakfast, another exactly two hours after his last meal but one hour before the next one. Mondays I take him to dance class, Wednesday is music therapy. I watch his diet, clip his nails, give him his medicine, use cream on his hands and acne medicine on his face. He likes to shop so I take him along to the supermarket, Target, Wal-Mart, the mall. I attend his ISP meetings, call his program to check in, ask how he's doing. I write in the communication book. When he has a cold, I blow his nose and bring him to the doctor. I call to cancel the van and call him in sick to work. I make his appointments. I comfort and cajole and reward when it's time for a shot or blood test. I find respite workers, doctors, information, educational toys, music that he'll like. I try to make his day easy and his mood happy, or at least, content.
These things I do for my 25-year-old son. I do it with a grateful feeling in my heart because a mother's love for her children is boundless, and I do not know another way to be.
But if I'm going to be truthful, sometimes I get tired.  Sometimes, just every so often, I don't want to do any of it. The feeling never lasts for more than a day, but sometimes it's a few hours. I feel so guilty when I think about wanting to feel free, for just a little while. What kind of mother am I?
I am afraid to say I feel this way, ashamed to admit it. Hell, my fingers have gone to the delete button three times since I put these words to print. I prefer to present a positive face to the world at all times.
Am I normal? Is it normal to feel like I must do these things while at the same time feel like I want someone else to do them? This paradoxical way of thinking is uncomfortable for me. I hate it.
When I need inspiration, I flip through a book I've owned for many years. The author has a gift, not just for words, but for getting to the very heart of feelings that mothers like me experience. Here is what I found today:
Barbara Gill wrote, of raising children with a disability, "We are knitting on at least a dozen needles. It is complicated and it is hard. But we do it. We drop a lot of stitches, but we knit our lives. And what interesting, varicolored, unique garments they turn out to be."

Wednesday, January 12, 2011


"I like you just the way you are."  Fred Rogers, Mister Rogers' Neighborhood

When people first meet my son, Cliff, they make a lot of assumptions about him. They expect that he's a "typical" person with Down syndrome. They assume he can talk and have a conversation; they ask him if he likes the Patriots and the Red Sox (or Yankees depending on the state we are in) as if it's the most natural thing in the world to know who they are. (He doesn't) They attempt to connect with him and I think that's so kind. Instead, a lot of the time I end up answering their questions for him, explaining a lot, smiling my head off, excusing his inability to respond to certain questions (and re-posing strangers' questions for him in a way he can understand), and trying to get through an initial meeting without making the other person feel awkward.

But my son is not what you might call typical of people with Down syndrome. He has very limited speech for one thing. He is unable to read or write. He's dependent on other people for most of his wants and needs. He's not the guy who can tell a joke (though he can be a total goofball), independently perform all his tasks at his job, or play a game without someone else doing most of the work. He's not the guy walking around town by himself or getting on a bus alone. That's just how he rolls. I, however, think he's perfect. Naturally.

I can recall the countless meetings I've had over the years while Cliff was a student. All I'd hear was "Cliff is unable to... Cliff can't...Cliff won't...Cliff doesn't know how..." I'd sit there listening to what my son did not have the ability to do, as if I didn't already know. When these meetings were over, I'd feel wrung out like a dishrag, exhausted, depressed, angry. A friend gave me some advice. She said, "Don't let a meeting go by where you don't insist that the teachers, the therapists, or the job coach tells you something positive. What CAN Cliff do? Focus on his strengths, not his weaknesses, and build on those." I never forgot that advice, and from then on, I asked them specifically to tell me something Cliff was able to do, and I think it went a long way towards changing their attitudes about him and the way they chose to teach him.

In the spirit of thinking positively, I will tell you that Cliff can make people smile. He can make you feel like a million bucks with one of his hugs. He has created a family dynamic which focuses on love and understanding and compassion. He can teach you things about yourself that you never knew. He can surprise you with his joyful belly laugh. He can change how you think about people with developmental disabilities. When he is singing at the top of his lungs it will make you laugh, or annoy the hell out of you if you're trying to do homework, watch TV, listen to music, have a conversation. He wants you to be happy. As limited as his speech is, he can sing the words to all the songs I've taught him since he was a little boy. If he gets mad at you, he doesn't hold a grudge for very long. He can say "Fuck" at the absolute most appropriate times, something I cannot say about my husband, who uses the word too often for my taste. (A blog post for another day perhaps?)
The thing about Cliff is that you can't know who he is with one accidental meeting at Stop 'n Shop. You've got to give it some time. As I move through my days there will always be someone I run into around town, at the store or the post office or the bank. And more often than not, Cliff will be with me. He is my almost constant companion. On those days, I hope you know that behind my words of explanation and introduction, of excusing and re-posing, lies a sincere wish for you to give my son a chance, to see who he is as a person, not merely his diagnosis. I hope you know that even if he doesn't answer right away, or at all, he appreciates your humanity. He doesn't know the meaning of the word, but he most certainly feels it. And so do I.