While the four of us are in the booth in the restaurant waiting for our pizza to arrive--the girls on one side, Ian and me on the other--I am sipping a diet cola and Ian is drinking an orange soda.
"That looks good," I murmur, having not had an orange soda in years. His mother is cutting his pizza into small pieces for him.
"Try it!" he says, and pushes the glass over to me and starts to lean the straw toward my mouth.
I defer. I'm a pretty uptight guy: I don't share straws with anyone other than my wife and my daughter.
"Really, Chris, it's so good," Ian continues. "I want you to have some." Ian speaks quickly, and the combination of his deafness and Down syndrome means that it's difficult to understand precisely what he is saying. It sounds sometimes as if he is trying to speak with a soggy English muffin in his mouth. Ian's intent, however, his desire to share something that he cherishes with me, is clear. And so I reach for the straw he is aiming at my lips and take a sip. It is good--considerably sweeter than the diet stuff on which I subsist, and a comforting echo of soft drinks from my own adolescence--and I thank him. He nods, smiling. Then abruptly he wraps both arms around me in a ferociously affectionate bear hug and tells me that he loves me.
Even my brother and I have difficulty saying that to each other.
Roughly one out of every eight hundred to a thousand children is born with Down syndrome. The odds increase dramatically as a woman gets older: A twenty-year-old has a mere one in two thousand likelihood of giving birth to a baby with the genetic disorder; a forty-nine-year-old has a one in ten chance.
Grace Freeman was thirty-six when Ian was born. She had done no prenatal testing--no amniocentesis, no ultrasonography--both because she wanted a baby so badly and because there was no history of Down's in her family. She told herself it wasn't possible that her child might be born with a disability. Nevertheless, she admits that while she was pregnant she wondered sometimes if she was whistling in the dark, and she wasn't completely surprised when he was born with the syndrome: "I'd sensed something was wrong," she recalls. "I had no concrete reason to believe this, but Ian started moving around late, and when he moved, he just moved so slowly."
Down syndrome is named for John Langdon Down, the nineteenth-century British physician who described the characteristics of the condition and differentiated it from mental retardation. The condition is the result of a chromosomal abnormality: Instead of the normal forty-six chromosomes in each cell--twenty-two pairs, plus the two that determine gender--a person with Down syndrome has a forty-seventh. The vast majority of the time, that extra chromosome is linked to the twenty-first pair of chromosomes. The scientific term is the pleasant-sounding alliterative "trisomy 21."
Grace says she was devastated when, ten days after Ian was born, she received the news that the chromosome tests had indeed confirmed that her little boy had Down syndrome: "We were at my mom's, and I just went completely to pieces. I was beside myself. I remember people telling me that I had to have a funeral for the baby I didn't have--that perfectly healthy one."
People were also telling her that she should consider giving Ian up for adoption, that as a single mother she couldn't possibly raise him on her own.
"But I didn't have any doubt," she says. "I knew I could do it. I had two brothers and their wives here in Vermont, my mom and dad, a lot of cousins, and a niece living nearby. We'd get through this." Her mother has been her greatest support: From the very first meeting with a geneticist through Ian's five separate ear surgeries, invariably she has accompanied her daughter and grandson to his doctors' appointments. But Grace has also been helped enormously by her friends in Lincoln, the central Vermont village in which she and Ian live. When logistics prohibit her from bringing Ian with her to a rehearsal, neighbor Lisa Dobkowski will stay with Ian until she gets home; when an overnight class trip to the Children's Museum in Boston prevents her from returning to Vermont until the next day, Lisa's fourteen-year-old daughter, Emily, will spend the night in the guest room in the Freeman house. Other times Ian will have a sleepover with friends up the road. And, these days, Grace is comfortable leaving Ian home alone for hours at a time, making sure he understands that if he needs anything he should simply press the redial button on their cordless phone and, for instance, their friend Barb Aitken will pick up.
Once when Grace went to Burlington and left Ian alone, she had keyed the redial into their neighbors, the Pertas, where thirteen-year-old Amaia was home. That night when Grace returned, the teen girl said, her voice a combination of incredulity and wonder, that she and Ian must have spoken a hundred times that day. Ian loved the redial feature, and the nearly instant connection it offered.
Nevertheless, Grace insists that the real secret to raising Ian alone is that she is a "hyperactive workaholic overachiever." In addition to her job as a schoolteacher and the time she commits to community theater, she spends her Tuesday nights playing an African drum with a group of musicians and dancers. She and Ian have horses in the meadow behind their home, a pair of miniature Arabians. And their 175-year-old farmhouse itself is a steady home-improvement project, with Grace doing much of the work herself. Right now she is replacing the joists in the basement and strengthening the first floor.
Ian is in their den today when I arrive for a visit, meticulously acting out the first half of the 1997 blockbuster movie, Titanic. One moment he is Leonardo DiCaprio showing Kate Winslet how it feels to stand at the bowsprit of the massive ship as it plunges through the Atlantic waves, and the next he is trying hard to turn the vessel away from the iceberg that has appeared out of nowhere. He is so focused on his performance that easily fifteen minutes pass before he puts his head into the dining room where his mother and I are sitting to say hello. When he discovers I am there, however, instantly the movie is forgotten as he leads me upstairs to show me how he and his mother have rearranged things in the loft in his bedroom, then the exercise bike in the guest room, then the map of Massachusetts he has completed at school, then downstairs to the work his mother is doing in the basement, and then outside to visit Gypsy and Little Fellow, their horses.
Like his mother, Ian has a lot of energy.
Ian is short, as are many people with Down syndrome, but he's not that much smaller than I am. I am five-eight. Most of the time he dresses like the other teenagers at the public high school he attends, which these days means baggy blue jeans and T-shirts.
Unlike his peers, Ian will occasionally break a few fashion rules. Once when I went straight from the airport to meet my daughter at a rehearsal--I'd been out of town for five days--I arrived wearing the black sports jacket I had worn on the plane. Ian tried it on, rolling up the sleeves because my arms are longer than his, but the makeover was uncanny. We have, apparently, similar-size shoulders, and so with the sleeves cuffed the jacket fit nicely. Ian was transformed into a man before my eyes. His posture grew from the casual slouch typical of many teen boys to the erect posture of a foreign diplomat. He put his shoulders back, his chest forward, and positively strutted around the corners of the dance room where his mother and my daughter were rehearsing.
Ian is a chameleon--or, as Grace calls him, a mimic. He understands instinctively the maxim about clothes making the man, and loves costumes. After he saw Joseph and the Amazing Technicolor Dreamcoat, he would don the multicolored cloak his mother had made for him and parade around the house as Pharaoh. Currently, with his mother in Once on This Island, a musical that features four temperamental gods pulling the strings on a mystic Caribbean island, he is often costumed in the majestic robes worn by Agwe, the show's god of water.
In this production, Agwe is played by a young Vermont actor named James Blanchard. James, twenty-three, and Ian have been friends since the two met when Ian's mom and James worked on another musical together, and James offers Ian one of the few things his mother can't: a male role model. It's one thing to stop with Mom for an ice cream after rehearsal; it's a considerably bigger deal to stop to have one with James.
This evening James and the ensemble are learning the blocking and choreography for a song called "Rain," in which Agwe unleashes a fierce storm upon the island. The dance has broad arm movements, prayers and pleas, and some very fluid dancing. The choreographer is moving quickly because there is a lot to cover. Nevertheless, standing there between the lip of the stage and the front row of seats is Ian, watching Agwe carefully and mirroring precisely the way the water god lets loose a tempest.
When the actors finally take a break, James sits down with Ian and teaches him precisely how Agwe will summon the squall.
"Ian has a natural theatrical bent, and so he loves to recite my lines with me. But basically we just play together the way I might play with any children in the cast. We goof around, we have fun," James says. Then, after considering Ian a moment, he adds--his voice rising slightly in wonder--"He has to be one of the most cheerful people I've ever met."
So long as Ian's mother is in a show with an Agwe or a Dr. Craven--or any of the other stage dads who've passed through his life--the teenager doesn't seem unduly concerned by his father's absence.
My wife wonders what it says about our world that it's the people among us with the lower IQs who hug unashamedly and love unconditionally. Ian is the only teenage boy either of us knows, including our nephews, who actually wants to embrace people.
These days I'm a theater person because my daughter is a theater person. But I've noticed as I chauffeur my Grace to the different shows she's been in that theater people hug, too. They hug even me, and all I do is drive one of the cast members to rehearsals because she's seven years shy of her driver's license.
Consequently, Ian is in his element in his mother's community of actors and dancers and singers. He may never play Tony in West Side Story, but someday he might lip-synch "Something's Coming" and make us imagine, for a moment, Richard Beymer's fiery gaze and fervent conviction that he has a miracle in his future. He may never reprise Mandy Patinkin's Broadway performance as Archibald Craven in The Secret Garden, but he sure can belt it out in the car.
Me, too--at least when I am with Ian. When we're driving to rehearsals together, I handle Neville Craven's songs and Ian sings brother Archie's. The two Graces are responsible for the women around them. And though I realize that my singing voice hovers between laughable and appalling--I am incapable of either carrying or distinguishing notes--my inhibitions slide away when I'm around Ian. I succumb completely to the boy's energy and enthusiasm and spectacular joy in the moment.
Certainly there is a long litany of things that Ian will never do in this life, but that's true for us all. Unlike many of us, however, Ian makes people happy--and that is a mighty accomplishment for anyone.
*
PART IV
THE
LOCAL WILDLIFE
Chapter 1.
SURLY COW DISPLAYS NO REMORSE
SOME YEARS AGO, my wife and I were driving south through Hinesburg on a foggy night in the spring, when out of the mist came a herd of cows in the road, charging north. We stopped the car and prepared for death, and then watched as the animals ran past us on both sides.
When the animals were well behind us and the ground had stopped shaking, we exited the car and started screaming and hollering as loud as we could. The farmers who were chasing the cows were yelling too, and so they thought we were trying to help corral the cows back into the barn where they belonged. This made for a perfectly fine arrangement: We could shriek, the cows could run, and everyone got a much-needed cardiovascular workout.
In all fairness, I actually did wave my arms a bit at the cows and try to push a few in the general direction of the barn. A number of times I even explained that I was a vegetarian, but obviously these cows were female, and they knew they were in no danger of becoming Quarter Pounders.
Eventually we got the cows home, and we did so without spilling any milk on either the asphalt or our car's fender.
I did learn a valuable lesson that night, however: Cows can be ornery.
Farmers, of course, learn this at an early age. Cows can be surly. Cows can be stubborn. Cows can be stupid.
And so I think it speaks volumes about Curt Estey that he has 110 cows on his Bristol dairy farm, and there is only one with whom he has a somewhat contentious relationship: No. 26.
Now No. 26 isn't huge, but she's 1,300 pounds of solid Holstein. She offers roughly sixty pounds of milk a day, and the amount is steadily climbing. She's an admirable producer.
And she's good to look at: cow eyes as deep as precious stones, a nose that looks like a scoop of blackberry sorbet. When she lows, her moo is a cross between a foghorn and the alto in a more than adequate choir.
But No. 26 grew testy during the last trimester of her pregnancy this spring. It was the first time she was with calf, and she grew demanding in unattractive ways. She grew piggy. Mulish. Downright bullheaded.
The folks on the farm found themselves steering clear of the cow. They couldn't wait for her to become de-calfeinated.
Finally, in early May, No. 26 exploded. She was eight months pregnant, and she'd had it with mud and Curt and the other cows. She'd had it with being an animal that had to cram four stomachs and a baby inside her. And so while Curt was training her to enter the milking parlor, she became a one-woman World Wrestling Federation wrecking crew. A Bovine Boxer. The Great Holstein Hope.
One moment she was a cow and the next she was a blur, slamming Curt into the wall of the barn, and breaking two of his ribs.
Now this was not the first time that Curt had had his ribs broken on the farm. A scant thirty yards from the spot in the barn where No. 26 had hip-checked him into the boards, a tractor had toppled upon him when he was eleven.
This was by far, however, his most painful accident, because the cow in question has shown absolutely no contrition.
"I've seen no evidence there's any guilt inside her," Estey says, "and that's very troubling. I've seen no sign of regret."
Moreover, No. 26 has now had her calf, and the farmer has yet to witness any indication that the new mother will instill even the most rudimentary sense of right and wrong in her progeny.
Consequently, I called a variety of people who've spent their lives around cows to see if No. 26 was typical of the species: Hard-hearted. Amoral. Quick to anger, slow to remorse.
The sad news? No. 26 is not merely typical, she may be quintessential. Said retired Lincoln farmer Fletcher Brown, "How difficult are cows? Why, they're as bad as some people!"
Chapter 2.
DEAD BAT DUTY DRAWS THE LINE
IF YOU ARE among the especially strong-stomached who occasionally read this column over Sunday breakfast or brunch, stop eating. Right now. Chew whatever is in your mouth, swallow, and push your chair away from the table.
OK. Ready?
There is a dead bat inside my woodstove. It looks glued to the inside of the door, its little bat head half-buried in the wrought-iron damper, its little bat body pressed flush against the creosote paste. Its furry bat back has upon it what I believe is a furry bat fungus.
I would tell you more about what the dead bat looks like, but I can't look at it long enough to give you the sort of idiosyncratic details of decomposition that might bring this piece to--forgive the irony--life.
See, the bat's been there since Labor Day.
No, that's not true. I discovered it Labor Day, but for all I know, it has been there since the Fourth of July.
It's still hanging upside-down inside my woodstove because I am dead-bat-removal-challenged. As a matter of fact, I'm pretty much any dead-animal-removal-challenged, but bats are especially problematic for me.
This is because a bat looks like a small flying rodent that happens to move at supersonic speed, while squeaking like a bath toy on crack.
And as my friend Ron Rood says about bats in his book, Animals Nobody Loves, most bats have a face "as endearing as a Halloween mask" (which makes me especially glad the dead bat in my woodstove decided to auger into the wall face first).
My sense is that removing the bat would be a relatively less stomach-turning proposition if the animal were simply dead on the woodstove floor. I'd simply adapt the method I use to remove dead mice in the attic, and push Mr. Bat Cadaver into Mr. Paper Bag with a stick, and then run like an Olympic sprinter to the Dumpster next door.
Idyll Banter: Weekly Excursions to a Very Small Town Page 9