Wednesday, May 30, 2012

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)…









Saturday, May 26, 2012


"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.”

“What’s the matter? Do you need to use the bathroom first?”

“Are you sick? Do you have a headache?”
 “Don’t you want to see your friends in Plainville?”

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?

Sunday, May 13, 2012


“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.

Wednesday, May 9, 2012


“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.