Fixer

“This my shit.”—Gwen Stefani, “Hollaback Girl”

In the impossible pursuit of perfection, I am like King Sisyphus, compelled to keep rolling a boulder up a hill, only to watch it roll down time and time again.  Even in the face of the proverbial losing battle, after I’ve picked myself up and patched the bruises, I have to keep trying to fix things I believe to be either wrong or at least in need of renovation. My motivation is a general attitude about wanting to balance out the world, my family, my friends, and my home. As with anything one does to excess, my tendency towards perfectionism is problematic, (just ask my husband!) leaving me at times disillusioned and ineluctably disappointed in the outcomes. But isn’t that the very definition of optimism? To continue to try to make things right despite poor odds?

Still, there are days where I am painfully reminded that there are just some things that are beyond my ability to fix. There are people, I am finally coming to accept, whose minds I can’t change and whose beliefs are too ingrained for me to reform. Perhaps it was arrogant of me to think I could do that in the first place.

After Cliff was born, I began to see people in a different light, to scrutinize and evaluate.  I learned to be perceptive, to cull from a person’s words and actions the answers I needed to find. Some of the friends I had didn’t make the cut. I shed them from my life because I would not compromise the happiness of my son and my own peaceable spirit by holding on to anyone who was not accepting and open to the idea that everyone belongs.  Their ignorance made me sad and angry, and I chose to walk away. Nor did I have patience for pity, because I was happy to have Cliff as my son and I needed, needed, them to be happy too.

In the years since, I’ve developed radar which assists me in surrounding myself and my family with the type of people who possess a like-minded philosophy. It always makes me smile to see them make an effort to talk to Cliff or to engage him in some meaningful way. I love them for their persistence even when Cliff doesn’t answer right away or he decides he doesn’t feel sociable at that moment.

It is sometimes a cruel world clearly in need of repair. I won’t stop trying to fix the things which do not support an inclusive, accepting society, or stop trying to enlighten the people who insist it doesn’t matter if they utter the word “retard” if they weren’t actually referring to my child. I will not listen to or support comedians who equate intellectually challenged individuals with dogs, even if that particular horror occurred eleven years ago (he’s not sorry, as there are other examples of his hate speech since that time). I guess my mistake is in expecting too much, and in hoping the fundamental differences between us are not irreparable. It gets to be exhausting, trying to fix things, but “this my shit”, this is who I am. My love for my son and my strong belief in the value and sanctity of each life compels me to roll that boulder up the mountain over and over, despite its immensity and the challenge of bracing against it in the hope that from time to time it will stay put.

Talking isn't doing. It is a kind of good deed to say well; and yet words are not deeds.   –William Shakespeare

My Mother's Song

"Gonna dance with the dolly with the hole in her stockin', while her knees keep a-knockin and her toes keep a-rockin. Gonna dance with the dolly with the hole in her stockin', gonna dance by the light of the moon."

My mother is one of those people who makes her mark on the world quietly but with great style. We are alike in some ways, most notably in our introverted personalities. We can both attest to the challenges of being an introvert in a society in which extroversion is highly valued and seen as a key to success. On those occasions when the extroverts in our lives seem to overshadow us, it can be difficult to remember that we have something worthwhile to offer. I have been discovering, however, that introverts, once they realize their power, can see themselves as God sees them, and claim their own particular kind of success.

My mother made a remark on my most recent visit home that both surprised and pained me. At the time, I brushed it off, gave it short shrift because the meaning and import of what she said didn’t take hold in my thoughts until later.

Before I tell you what she said, I should preface this with a brief description of the man she married, as it figures greatly into this story.  My dad is most definitely not an introvert and in fact, has oftentimes been described as strict, gregarious, outgoing, loud, a storyteller.  As children, my seven siblings and I feared his booming voice when we were caught doing something wrong, so it was always our sincere hope that if we were found out, my mother would be the one to admonish us instead. The decibel count was considerably lower and she would often respond to our minor transgressions by speaking aloud to no one in particular, with her familiar lament: “One word from me and they do as they damn well please!”, she would huff with exasperated surrender.  She was the steady thrumming rain while my dad was the thunder and, on occasion, the lightning.

When in 1985 I presented them with Cliff, their second grandchild, neither of them had had any experience when it came to children with intellectual challenges. Even so, they responded with typical familial joy and an attitude of complete acceptance, and simply loved him like they would any grandchild. From the beginning, my dad was inclined to try to make Cliff laugh whenever he could. It is Dad's nature to be silly, to bark like a dog, recite the lines from Jack and the Beanstalk—the ones that start with “Fee Fi Fo Fum”, break out into song at the dinner table, and dance to a tune on the stereo. While my dad was involved in these various shenanigans, my mother would sit by and smile, or occasionally raise her eyebrows. But one would never, ever see her risk her dignity by making faces or animal noises of any kind. I suppose you could say my dad was the actor at center stage while my mom hung back, off left in the wings in true extrovert/introvert fashion, respectively.

So, getting back to the remark she made, it was just after my dad finished singing a song about broccoli he made up years ago and still sings to Cliff, with consistent results—Cliff sings along and laughs uproariously at the last vibrato-tinged note. Here’s what she said, and I am paraphrasing here, but the essence of it was “I can’t do that, be silly and goofy and make Cliff laugh like that. I wish I could do that. I guess Daddy just ‘has’ it.” Her tone of voice felt a little sad, as if she were revealing that she had long harbored this desire, and not just in that moment.

I began to think about my mother’s relationship with Cliff, to decipher what it was she thought was lacking. I have come to the conclusion that nothing is lacking. Nothing at all.

 If you don’t know my mom, whose name is also Celia, you might not know she is extraordinarily talented.  She graduated from the Juilliard School of Music in New York City and plays the piano in such a way as to make you stop what you are doing, sit down, and listen. She was classically trained, which is why all of us can hum Bach and Beethoven, Chopin and Debussy. If she hadn’t become a mother, she could have become world famous.

Yet here she was, expressing a desire to be something she wasn’t, could never be. In that moment , I think she had forgotten herself, and all the years of memories where she is sitting at the piano, inviting a 6-year-old Cliff, a 10-year-old Cliff, a 19 -year-old Cliff,  to sit on the bench next to her as she plays to him, singing Rudolph, Simple Gifts, America the Beautiful and all the other songs in his repertoire, leaning towards him as she connects his words to her rhythm. Here in my memories, are visions of her sharing her music with him whenever there was an opportunity, a moment of relative calm in the pandemonium that sometimes describes life at 60 Wesley Ave. There is my mother, playing all the music that has formed the background of my family’s life, starting with Cliff, creating the remembrance of precious moments with each of her 18 grandchildren. But her remark was about Cliff and I need to write this so that not one more day will pass without her knowing that Grandma's unique way of delivering the goods is just as wonderful as the song that belongs to Grandpa. She has done that a million times, in the most lovely way for all of Cliff’s 27 years.

Where my father is the lungs, my mother is the heart. One needs both to live. There is no one else who can do what my mother does. She should know that. And remember it forever.

Us, in a Nutshell

1980, Summer

He gazed at her from his spot on the corner, from under the eaves of a small five and dime store. She noticed and looked back at him from where she stood under the bus stop sign. The number 13 bus arrived.

“Why are we always the last ones to leave?” he said.

“I don’t know,” she said.

“Sit with me?” he said.

“Sure,” she said.

“What’s your name?” he said.

“I have a boyfriend,” she said.

“I see,” he said.

“I have a car we can use. I’ll pick you up tomorrow,” she said.

“I need a rug and a couch for my apartment,” he said.

“I’ll help you pick them out,” she said.

The next night he bought a second-hand red Persian rug and a furry, rust-colored loveseat. They went out to a bar.

“I’ll have a pina colada,” he said.

“Bring me a 7 and 7,” she said.

“Thanks for driving me to the store,” he said.

“I’d go to bed with you tonight,” she said.

But he had a friend crashing at his apartment. “ Maybe tomorrow?” he said.

She did not care that she had a boyfriend. She slept with him the next day and began to fall in love.

Years 1-4

“I don’t know how or when, but I’d like to marry you,” he said.

“Okay,” she said. And they were married.

They made love on the red Persian rug.

“I’m pregnant,” she said.

“Let’s name him after my dad,” he said.

1985, Winter

The baby was born. She cried.

“Why did this happen?” she said.

“It will be okay. He’ll be happy. We’ll make sure of it,” he said.

“I love him so much,” she said.

They had a cat named Desdemona who got sick and died two months after he bought it for her. It broke her heart. She taught school while he worked for a company near the bus stop sign where they had met.

Years 5-8

They bought their first house. She missed her family, now three hours away.

“I want more children,” she said.

“Fine,” he said. But she couldn’t have children unless she had an operation.

“I’m fine with just the one,” he said.

“I want more children,” she said.

Years 9-12

Years passed. She had the operation, even though he was scared she would die and leave him alone. Thirteen months later, the next baby boy came. Three years after that, their baby girl. They were miracle babies.

“I love them so much,” she said.

“They’re beautiful,” he said.

Years 13-30

More years went by. They had two dogs named Sammi and Jojo, a mean cat named Toughie, and various hamsters and blue Betta fish. They had moved again. She still missed her family, so far away. They muddled through, always coming together when necessary, always returning to love even when their children gave them headaches, even when they didn’t like each other very much.

 “The kids are almost grown,” she said.

“Yes. But here they still are,” he said.

“Perhaps that’s a good thing,” she said.

“Perhaps,” he said.

They got older. Their muscles ached. They slowed down. She had bad knees. He lost most of his hair.

“Wanna fool around?” he said.

“The kids are still awake,” she said.

“Maybe tomorrow?” he said.

“I would have gone to bed with you the first night,” she said.

“I know,” he said. 

“I love you the same,” she said.

“I love you the same, too,” he said.

 

The End (at least, for now)…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Play

"After all, tomorrow is another day."--Margaret Mitchell

Yesterday Cliff refused to get on the van to go to work. It is always puzzling when he does things that go against his routine. While the rest of us rail against the predictability and sameness of Monday through Friday, Cliff thrives on it. While some of us wish we could just hit the lottery and never have to work again, my son looks forward to seeing friends, arriving to fanfare in the building where everyone is happy to see him. There are no office politics or cliques or frowning bosses. There are sign language classes and dance group, a workout room and a Wii. There is work that is meaningful and engaging. Did I mention there are girls?

At 8:15, as the bus driver waited in our driveway, I reminded Cliff of all the wonderful people and activities that awaited him, to no avail. Here’s part of the conversation:
“Cliff, the bus driver is waiting. Time to go to work.”
“No!”

“What’s the matter? Do you need to use the bathroom first?”
“No!”

“Are you sick? Do you have a headache?”

"No!”

 “Don’t you want to see your friends in Plainville?”
“No!’

Perhaps you see a pattern emerging here? Outside, I approached the van driver, Gidget, and told her what had transpired. She suggested that perhaps he just needed a day off.

Now that is something I hadn’t considered.

Back inside, Cliff was listening to his iPod, dancing around the family room at a frenetic pace, perfectly fine. Not sick. Not tired. Not anything but joyful. Gidget may have hit on something. He did a lot of nothing yesterday, and the world didn’t stop. There were no regrets. His demeanor was that of someone who had just exercised his right to choose.

So what do I make of this day? Just because he doesn’t communicate particularly well, doesn’t mean he has nothing to say. Just because he doesn’t want to go to work occasionally, doesn’t mean he’s sick or tired, or that something is wrong.  Maybe, just maybe, Cliff Taylor wants a day off in the summertime, free to dance around the family room.

And really, how different is that from you and me?

Transformed

“In order to see the opportunities, though, you must accept what happened as if you have chosen it.” –Arnold Beisser

Becoming a mother changes you. Becoming a mother to a child with a physical or intellectual difference is less a change than an upheaval. Whatever you thought about yourself before, you find yourself defined in ways you never imagined.

First of all, you have achieved fame. Everyone knows you as the mother with the autistic child or the mother whose third baby was born with cerebral palsy. More often than not that’s how people will refer to you. “You know Christine, don’t you? The woman with the daughter with Down syndrome?”

You will discover how “special” you are. In an attempt to comfort you, you will hear the platitudes over and over again, like how God only chooses special people to be the mother of a “child like this.” You’ll have to smile and nod, even after you’ve heard it a thousand times. You’ll have to patiently listen as your child is limned as an angel, rather than the human being he is.

Writers will make us other- worldly, attributing characteristics to us that make us candidates for sainthood. Remember Erma Bombeck’s 1993 column titled, “Blessed Be Moms of Handicapped”? The angel asks God whom she should assign to be the patron saint of a mother soon to give birth to a child with a disability. God smiles and says, “A mirror will suffice.”

As much as we desire to be “just a mom” the truth is, there are fundamental differences between the “haves” (those of us who have children with disabilities) and the “have nots.”(those of us who do not) But they are not the differences the “have nots” think they are. Our lives are not necessarily harder or less fun. We don’t necessarily experience more sadness. It’s all relative.  A person whose child was born without complications may be coping with a failing marriage or struggling with alcohol. Their kids may have difficulty making friends or be dealing with an unexpected pregnancy. Even the most outwardly perfect family has its troubles.

We spend a lot of time trying to be regarded as regular people, in much the same way we emphasize that our children are more like typical children than unlike them.

But we ARE different, don’t you think?

Our children with special needs have produced profound changes in the way we think and act and feel.  Our child’s difference makes us different. Just as our child’s disability is integrated into his identity, so is it integrated into our own.

Being different is not a negative state of being. At least, it doesn’t have to be. It can be an opportunity to grow and to recognize our own strength and power to change the world.  Everyone knows that all the positive changes we have seen in the last fifty years—the closing of institutions, IDEA, inclusive schools, jobs and communities—are the result of mothers and fathers who have fought for it.

Our difference means we are more attuned to finding and surrounding ourselves with the best kind of people.  A lot of us have radar for that sort of thing and we rarely waste time with anyone who cannot appreciate the gifts and beauty and humanness of all people living with a difference. Some of us have a completely different set of friends than we did before our child was born.

No matter how quiet we once were, how often we acquiesced to the will of another, or how uninvolved we were, our experience with our child has made us forceful advocates. Whether that change happened right away or later in our lives, we no longer stand silent when something is wrong or unfair or not what we wanted.

We mothers of exceptional children have forged new identities since the birth of our child. We needn’t allow ourselves to be defined by our child’s disability, just as we shouldn’t allow our child to be defined by his.  But we can appreciate how our child’s birth has transformed us. We are who we were meant to be, better versions of ourselves.

18

                                                             

“She needs wide open spaces/Room to make her big mistakes/She needs new faces/She knows the high stakes.”—Dixie Chicks

Sometimes age is not just a number. Sometimes age is a harbinger of change, a jumping off point after which the heart and mind are too open to turn back.  In my mind I imagine an invisible tether, pulling my daughter along a path still uncertain in its direction, except that the path leads away from home.

I recently sold Olivia’s childhood bedroom set for $750. Two weeks later I had her pink and purple flower wall (complete with white picket fence) painted over with a color named “Baltic Gray”. The plain, solid gray accent wall, the full size mattress she insisted on putting on the floor to fulfill a desire for a style she calls “indie”, and her ill-advised (and unsupported) desire to get a tattoo have become the latest in a barrage of hits against a proverbial wall of my own denial. But then, I’ve always resisted my children’s maddening insistence on growing up.

When your baby turns 18, it heralds a distinct call to a next phase of life, not just for her but for me. With a light heart and an eager willingness to find where her life will lead her, Olivia is ready and I have to let her go. She said to me the other day, “I feel like I’m going to do lots of things before I find that one thing to do. I can see myself taking all kinds of classes because I’m interested in so many things.”  It’s funny to think my sleepy girl, the one who has been late to school more times than I’m inclined to admit, is this enthused about learning!

Besides college, she’s been contemplating joining Americorps, a kind of domestic Peace Corps, if you will. The idea of taking a gap year before college appeals to her sense of adventure, her belief that she can learn critical life lessons outside the traditional classroom. It’s not the conventional way all her friends are going, so I admire her even more for bucking tradition and taking a chance with an unknown entity.

She is ready to go, though as much as it all appeals to her, she does not deny she’s going to miss us, miss home and its predictable comforts. We will miss her too, more than we may realize right now. Her beautiful spirit, so evident whenever she walks into the room, is going to be absent for more days and weeks than it will be present. Seeing her face every day, especially when she shows up after her curfew, gives me the kind of peace only a parent knows. It will be difficult to learn to give that up if she leaves for parts unknown to help build a house, tutor inner city kids, clean up a bog in Louisiana. I have to trust others to take care of her and trust that she will take care of herself. Did I do a good enough job teaching her what she needs to know?

 A few days after her birthday, I invited three of Olivia’s best friends to our house and surprised her with a small, intimate birthday dinner. It was mostly a grown-up affair, with flowers and fancy dishes. Oh, and a birthday crown with an “18” on it that lights up. I tried to make it elegant, and it was, until I brought out the silly masks. Each girl held a half mask on her face, so that they looked like half themselves, half a mustachioed man or a buck-toothed clown or a furry bear. After dessert, each girl took home a goody bag. Did I mention Olivia is my baby?

Before she leaves for college or Americorps, whichever is her destiny, before I have to look at her empty bedroom, before her chair at the kitchen table goes un-sat in night after night, I want her to know, without reservation, that she is loved. I also want her to know all that I have learned in my 54 years, but she probably won’t listen. She’s got to figure it out, like I did. It really is the best way. Not that that will stop me from trying, of course.

I hope she has a blast. I hope the adventure is even better than she had dreamed. I hope 18 will be a year of finding love, of finding meaning in the memorable moments big and small. I hope she finds reassurance in times of doubt, peace amidst chaos, sisterhood among her peers.

Most of all I hope she remembers the invisible tether goes both ways.

Inedible

“It just goes to show you, it’s always something.” –Roseanne Rosannadanna

April, 2000. It was a week after Easter and our kids were still enjoying the Easter baskets of their dreams. They overflowed with crap galore. It was like Christmas only on a slightly smaller scale.

When I was a kid, we woke up to baskets my dad had brought home from Woolworth’s, the kind with the most appalling chocolate and “toys” contained inside the shrink wrap. We liked appalling chocolate in those days. We didn’t have anything to compare it to. One Easter, my sisters and I went downstairs and couldn’t find our baskets anywhere. When we ran upstairs crying to our sleeping parents, my mother sprang to life from a dead sleep, shot darts with her eyes into my father, and then suggested the Easter Bunny hid them, like he hides Easter eggs. “Go and look in the basement. Wouldn’t that be such a silly thing for the Eastern Bunny to do?” Yeah, real funny. Our basement was dark and scary. The Boogey-Man had himself a cozy little corner down there. So the four of us traipsed down the rickety stairs into the gloom, or should I say, the depths of Hell, and sure enough, there they were: four pink wicker-like baskets sitting there in front of the old refrigerator on the damp cement floor. That Easter Bunny. What a jokester. I got a half-naked plastic fake Barbie and a gun that allowed me to pop off a yellow spinny thing “inadvertently” at my sisters’ heads. The 3-page coloring book with crummy plastic crayons that stuck to the page was a head-scratcher, but who cares? We had a giant Palmer hollow chocolate bunny and jelly beans and foil-covered chocolate eggs to eat!

No Woolworth baskets for my kids. I’ve spoiled them with fancy Easter baskets filled with the most delectable chocolate known to man. The other basket items include everything from the very practical (socks and pens) to the impractical but essential nonetheless (Magic 8 Ball, a Vote Republican lapel button, something called Flarp, or as it is more widely known, Fart-in-a-Cup).

But I digress.

April, 2000. It was early morning, and I was expecting twelve little girls that day at our house for Olivia’s sixth birthday party. Then disaster struck. I called my good friend Kerry. “We have to take Cliff to the doctor. There’s something really wrong with him!”

I asked her if she would come over and give Olivia’s birthday party for me. I was asking a favor that was ridiculously overstepping boundaries, but I was out of my mind at the time. I couldn’t cancel my little girl’s party! I had spent hours the night before filling pink cardboard purses with glitter nail polish and five thousand other kinds of shoddy merchandise. And that morning, 15-year-old Cliff had woken up, vomiting and miserable. I’m about to write something disgusting here, so if you’re eating, click out of this right now.

The reason I was certain Cliff was dying was that his vomit looked like pieces of a liver or a kidney or a lung. He was literally coughing up a lung!

Once Kerry got to my house, Ken and I rushed Cliff to Dr. Luloff’s office, along with a bag filled with Cliff’s lung/kidney/liver parts. First Dr. Luloff had to calm us down. He took one look at Cliff and said, “You know, he looks not so bad for someone who expectorated a critical body part.” He examined Cliff and found him to be slightly pale, and a little tired, but not feverish or about to expire.

Examining the baggie full of I-didn’t-know-what, he asked, “Could he have eaten some raw chicken from the fridge?” Raw chicken?  There were cupcakes, M & M’s, cookies and pizza for the party! Why would Cliff have chosen raw chicken?

He calmly threw out the baggie and told us to go home and figure out what Cliff had eaten because in his practiced opinion, all his innards were intact.

When we arrived home, we looked all over his room but saw nothing suspicious. The next stop was Max’s room and suddenly, with great clarity, we realized what Cliff must have eaten. Sitting innocently on Max’s side table with the cover off was the culprit: Flarp.

What is Flarp you ask? Just the most fun toy a kid could find in an Easter basket. It’s a plastic cup of tan-colored stuff similar to Silly Putty. But here’s the great part: you stick your finger down into it, creating a disgusting wet fart-like noise. It’s hilarious. Just not edible. “Do not eat!” “Not for human consumption!” “Will cause mild irritation of the stomach lining!”

In the end, the birthday party was a success, but the basket full of the most delectable chocolates known to man, the gourmet jelly beans and the organic salted caramels, were all still sitting uneaten in the Easter basket. If only I could have said that about the Flarp.
That Easter Bunny. What a jokester.