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.  

Asleep

“I shall need to sleep three weeks on end to get rested from the rest I’ve had.” –Thomas Mann, German novelist

Have you heard of the book by Adam Mansbach called Go the F**k to Sleep?  It’s the modern parents’ hilarious rant-in-a-book, a bit of humor to get them through those times when the only desire they have in this entire world is to sit alone on the couch with a glass of wine in peace while the sweet little cherubs slumber upstairs. Lately, I’ve been considering writing a letter to Mr. Mansbach. I’d like to suggest another book for the teen years: Get the F**k Up! 

Allow me to explain.

On Friday morning, I approached the closed bedroom door. There is a half sheet of notepaper taped horizontally onto the upper right quadrant which reads, “Good Parking Ass Hole”, underlined twice for emphasis. It’s something Olivia found on her car a few months ago, to which she has taken a bizarre liking. Some stranger put it on her windshield one afternoon last year while she was at the July 4th town celebration. We both thought it was amusing that the composer of this well-placed note wrote his insult as two words instead of with the correct spelling which, in case you were wondering, is asshole. She admitted it was a poor parking job, but doesn’t apologize for it. “Well, there was no place else to park and I had to fit the car into a space that was SO hard to get into!” 

If only I could find that asshole and tell him how much she loved his little message.

I knocked on the door softly, hoping for the word that tells me she is the responsible version of my teenage daughter today. The word is “Yep”, spoken with her awake voice rather than her sleepy one. The tone and strength of the “Yep” is what determines which scene will be before me when I crack open the door. Will I find her still in bed looking at but not actually focusing on me and mumbling, “What? What time is it?” Or will I find her on the floor sitting cross-legged in front of the mirror putting makeup on her already gorgeous face? I always, always, hope beyond hope for the latter.

Not hearing any response, I sighed, no, I pushed air out of my lungs with pursed lips and the pissed-off attitude of a frustrated mother fighting a relentless battle. Cracking open the door to my daughter’s bedroom, it was not the responsible version I found. It was the other one, the one that makes me wonder where it all went wrong. In my humble opinion, it’s very simple: set the alarm, turn the alarm off, stretch, and get the f**k up. Alas, the figure on the bed was motionless. It was 6:37 a.m. on a school day. Considering school would start in less than an hour, and she still wasn’t showered or dressed, her first stop will be the B House office to pick up her late pass and sign up for yet another detention.

Detention at our high school starts out as a half hour for the first three tardies. After that, late students get what is called an ADP. Not sure what the acronym stands for, but I know this particular detention lasts two and a half hours. Third marking period has barely started and my daughter has already racked up three ADPs. In other words, she is CHRONICALLY tardy.

I’ve finally come to realize at this late date, that detention is not enough of a deterrent. How many times as a teacher have I gotten angry about parents who expect the school to parent their children? How many times this year have I done the very same thing?

So when Olivia came downstairs into the kitchen, I handed her the keys to my car. “You’re taking my car to school today.” It’s the consequence I’ve decided upon and one I hope will be effective. She loves her 2011 Subaru Forrester. She does not love my 2008 banged-up Toyota Sienna mini-van (I wasn't the one who banged it up. Let’s leave it at that).  She didn’t dare say a word. She was already an hour late for school. The next consequence will be worse—Ken or I will drive her there and pick her up. She’ll really hate that.

Will my plan work? I can’t predict the outcome. What I know for certain is before long, she’ll have to get up for college classes and community service work and after that, a job in the real world!  There’s no detention for any of those scenarios.

If my mini-van/car service consequences fail to get her out of the house on time, I'm out of ideas.

I just hope I don’t find a note taped to my bedroom door tomorrow morning that reads, “Good Parenting Ass Hole”, underlined twice for emphasis.

Seth

                                                                                         

“You've got a friend in me
You've got a friend in me
You've got troubles, well I've got 'em too
There isn't anything I wouldn't do for you
We stick together and we see it through
You've got a friend in me
You've got a friend in me” --from ‘Toy Story’, Randy Newman

Seth jumps out of his mother’s car before she can park it, and runs over to join Cliff and me. Arm in arm and smiling, they walk together into the building and head down the stairs to their track and field practice. I follow behind, and, watching their progress towards the gym I’m struck by their similar profiles: each one is about five feet tall, stocky with slight bellies and muscular calves. They are both, in typical “mom speak”, adorable. Theirs is a relatively new friendship, slow to start but very promising. All during the practice, they never leave each other’s side, except when it is one or the other’s turn to race. It’s beginning to look like what one might call a “bromance”, a true friendship between a couple of guys.

We first met Seth almost three years ago at Special Olympics bocce ball practice. That first summer the friendship hadn’t really taken hold. It was a matter of timing. Neither of them attended every session, so they didn’t get to know each other well. Last summer, there was a slight shift in the way they interacted. It was enough for the breakthrough: Seth decided Cliff was pretty cool. Besides, Seth had a stubborn insistence on taking his turn last and Cliff didn’t have a problem with that. Seth, in turn, didn’t seem to mind Cliff’s interminably excessive windup before the throw.

When their birthdays came around, they invited each other to celebrate. Now, with the start of Special Olympics track and field, there will be more regularity to the get-togethers, a time they can look forward to every Monday evening. Each practice holds that extra something, beyond the fun of the sport itself. Seth’s friend Cliff will be there; Cliff’s friend Seth will be there.

As practice comes to an end, the two of them walk around the gym to cool down before the coach’s instructions. Vickie, Seth’s mom, and I sit in the stands cheering them on. We watch as they round each corner and I’m reminded of a sepia-toned greeting card, the one where two people stand with their backs to the camera, photographed as they gaze at something off on the distant horizon. It feels a little bit like a Hallmark moment and I can’t stop smiling. I have wished so hard for Cliff to have a very best friend since we moved here fourteen years ago. A friend who likes Cliff for the person he is, without expectation of conversation or a need for anything more than Cliff is capable of giving. It turns out, neither one exactly has a gift for gab. Somehow, though, they “get” each other!

Friendship sometimes rests on a tenuous thread, especially in a world such as Cliff’s and Seth’s, where parents are in control of arranging outings, and work, schedules, prior commitments, and timing is everything. It’s essential for the moms to like each other as well, because our kids aren’t independent. But the desire to belong is a fundamental need of every human being. We’re not meant to be alone, and there is, in friendship, a happiness factor that one can’t get any other way. Cliff and Seth are no different than other people in that respect. It is a need as essential as food, drink, and shelter. There is a poverty of the soul experienced by people living without friendship or camaraderie with another human being. It’s the reason parents like me will go to the ends of the earth, and be relentless in the search for our kids’ place in the world, especially when they may have difficulty trying to find it themselves.

Such beauty there is, everywhere I look—pink chiffon, white crinkly crinoline, sparkles on new snow, a blood-red moon just settling into the orange-pink sky, a blooming cherry tree about to burst its blossoms, cascades of light on a fireworks night in summer, frosted chocolate cupcakes. Now, added to this hopeful list are the images of Cliff and Seth running, walking, strolling breathless around the track, arm-in-arm on a perfect Monday night.