The news that the baby has been born comes by email. There are exclamations around the office, like neighborhood fireworks whose rhythm of release is never quite mastered. There are gaping silences, then an “Oh!” and a “Baby!” I hold myself quite still and reread the email. A baby has been born to my coworker and his wife. It was a long delivery. A successful delivery. As they say, Mom and baby are doing fine. But I am looking for something else. I am sniffing for a hint. A hint that maybe not all is fine, and maybe I am not alone in having my idyllic dreams snuffed and reduced to smoke. I feel terrible, certainly. Write to a friend, the only one who understands: “Envy. It’s evil.” People use the phrase “murderous rage” as if it is the worst emotional pool a person can drop into, a force that will make a person do unspeakable and unforgiveable things. My envy may not cause me to kill, or maim, but I understand how it can because I feel poisoned by it. There was a murder here a year or two ago that was as horrifying and bizarre as any you’d read in the 14th book by a mystery thriller writer who has upped the ante with each book until she has ultimately run out of even semi-reasonable plots. A woman, desperate to have her own baby, murders a pregnant woman and removes the baby from her belly, hoping I suppose to keep it for her own, but kills the baby while performing the gruesome surgery in her basement. I would never. I know this. But I understand the pickling that spoils the heart, kills off empathy and human kindness like alcohol destroys bacteria. I want no one to ever be happy with healthy babies and fulfilled dreams. I must actively work to flush these feelings, drain them with a flood of self-talk to drive them like cattle back into the perimeter fence. The envy lives in me like a child. It grasps for someone to come and join it in its misery. Oh yes, misery loves company. How can I feel so alone among the rubble of my dreams? Won’t somebody come and play, somebody come and play today, I hear in my head the Sesame Street song that my now 8 year old son still listens to. He should be watching Star Wars or Disney films that I was all prepared to hate in all their lack of sophistication and misogyny. But I would kill to watch Aladdin for the umpteenth time, if only Noah’s mind could develop enough for him to fall in love with something new. There is so little new in a life set on repeat. Some parents write about how glorious it is when their kids with whatever kind of delay spit out a new word, or show a new interest. And it’s true. So true! There was a spark of joy when I asked Noah last night when he was playing in the bath with small animal figures who jump and splash into the water (a game he has played for 6 years made all the more fun when you accuse the figurines of being “bad” and not allowed to go the mall, which is Noah’s greatest fear) who the Bad Penguin was? He held him up over the lip of the bathtub and said, “Him!” It’s cute the way he said it. The way he says a lot of things, like “Day Du” for “Thank you.” And I celebrate it. Tell the story to Mark when he comes home. And we laugh as though we are happy and really feeling joy. But there is no true joy to be had in hearing your 8 year old son say a word that most kids master both verbally and grammatically many years prior. There is no true excitement that this work, this “him” might lead soon or someday to a sentence, or a story, or even, a glimpse into his inner life, if he has one. Does he? Does a child who has watched the same Elmo’s World episode 50 times have an inner life? Or is it like driving on autopilot? Sometimes I think being Noah must be like being a bit drunk all day, every day. His ataxia and nystagmus have him listing from side to side, and he trips and falls more times during a day than most of us in a year. But he shakes it off like a drunk might when pushing through the door of the bar the wrong way, or stumbling off a curb, or hitting a shin against the corner of the coffee table. He fumbles for words, spews emotions like a sad drunk who moves from giddiness to sadness between sips. He moves through is world with the same haze that I do when I’ve had too much to drink, but drive home confident that I know the way, that I will stick to the deepest worn grove, like I do when I get home and careen through the house to get water, Advil, let the dog out, stuff something salty in my mouth, brush my teeth, dress, not thinking keenly about anything. Everything is just a movement that leads to another movement that leads to another movement. And I hope I haven’t truly hurt myself in the process, and I’m certain that I will feel like shit the next day. How does Noah do that? How does he spend each day in some kind of quasi-coma that just leads to yet another day in that same fog and stumble and keep your head down kind of living. I know it is assumption. That I have no idea what his life is like. That none of us as parents know who our child will be. And for most parents that’s what’s so damn exciting. That’s the novelty. And that’s where our hope lies: it lies in potential. And my friend, the one with the new baby. He looks at her and sees the embodiment of all she can be. While I look at Noah and see what he will never be. How can I not be envious? Not of my friend’s good luck. But of his new daughter’s life? How can I not be envious of that life for Noah?
Tag: otherness
Preying on Time
I am driving, and I am happy. I am streaming George Michael’s greatest hits–Ladies and Gentlemen–from my iPhone and into the speakers of a Toyota RAV we were given by your parents, a gift, no doubt because they feel somewhat sorry for us, for the lost dream, but it has a JVC bass and a V6 engine, so the music sounds good and I can accelerate through traffic when every car seems to move more slowly than I can possible stand. I am driving from an hour spent with my physical trainer, who is good-looking but not very interesting, and so the perfect recipe for a stranger who might touch my body, watch how my body works, correctly it with a slight touch of fingertips. He costs me $52 an hour and I have been seeing him weekly for a year, and have something like 18 pounds and a more defined waistline to show for the investment. I am driving from two hours spent under the not-so-tender ministrations of my hairstylist–(I am too Minnesotan to utter an “ow” when she pulls a brush through my hair which still knots up into a rat’s nest like it did when I was 7)–who has made my long hair copper, and my eyebrows less sprawling, for $170 dollars (including tip.) I said yes, when she produced a new product from her cupboard, to be used during the dying process to increase the likelihood my hair will “take” the color, though she can’t guarantee it, because everyone’s hair is different. I justify my acquiescence by reasoning that the dye is expensive itself, so why not try to make it last; plus, any time I walk into a Target or Walgreens, I seem to buy $25 dollars worth of stuff I’d never planned to buy, so why not spend it deliberately in this way? I am heading across town, my workout behind me, my hair gleaming and straightened, the music I wrote my undergrad thesis–short stories, not all of them about love–to, this one: Praying for Time, playing in the cocoon of my car, heading up north to a shop that specializes in “ski, tennis, and snowboard” and is as high-priced as it seems. I am getting my tennis racquet restrung, possibly because my elbow has started hurting and new strings may solve the problem, but also because I have been losing a lot, losing to both better players and to players that shouldn’t have the skills to beat me. I know I am mentally suspect. I know that when push comes to shove, I tighten up, and that is why I lose more than I should. But maybe new strings will turn my luck around, lift my confidence so I can fire off the forehands that make up the majority of my game. My game. It’s pretentious for a 44 year old woman who has only been playing tennis for 10 year to refer to herself as having “a game” and no doubt I’d roll my eyes at any middle-aged weekend basketball player or early-morning round of golf before going into the office who referred to himself has having “a game,” but I spend a lot of time and money on said game, because hitting a down-the-line winner during a match feels as good to me as a kiss, and winning? Definitely as good as an orgasm. Since my husband and I have no time or energy for sex, I take what satisfaction I can get by hitting a backhand slice dropshot against that one lady who called my T-serve “out” when it was obviously in. I try not to let her gamesmanship affect me, but it usually does. I try to shake it off; I try to lighten up; I even call one of her in shots “out.” But I’m shaken. Put on the defense. Forgetting to play my game. At the shop, I see that they are offering a sale on last year’s racquet models. Spontaneously, I buy one for $125, as a backup in case I break mine–it’s becoming more frequent that I bang my racquet on the hardcourts when I make a particularly dense error–or even just break a string (which likely will never happen because I simply don’t put that much spin on the ball.) Better to be safe than sorry, and it is a good deal. I justify spending money on tennis as a way of investing in myself. I’m not thin, and I don’t run, and I like to eat too much of just about anything, but I love tennis–I joke that my last life was as a labrador because I’ll only stop eating if I’m chasing a little yellow ball–and I’m glad something gets me moving. Perhaps that one form of exercise will amount to even the smallest increase in my life expectancy, because it’s true that I can never die. I mean, I will. But, this thought, fleeting as the shadow of a hawk as it glides low over a field in search for a mouthful, a talonful, of field mouse, comes again, right then at this moment when I am so happy, when I am doing the right things to be happy, because this is a good life with a good job that allows me to buy everything I need to be happy in this and any moment, and a good marriage that allows me to the freedom to find and do these things that make me happy, but really, how can I ever be happy, knowing that when I die, when I die sometime between now and, maybe, another 44 years, I will leave behind a son who will never be able to care for himself by himself. Another new fissure is added to the many, too many, that striate my heart at that moment when I swallow the truth that there is no happy, just forgetting. A friend once told me that people are like antelopes in the plains of South Africa. We have to forget that there is a lion, a predator lurking just over the rise, or our anxiety over dying would subsume us, exhaust us for the escape. When Noah began having seizures and a futureless future was like a blackhole looming on the horizon of my life, I spent a lot of money, money that we didn’t have, in order to distract myself. Maybe that’s what I’m still doing. Maybe I’m buying back some of that lost dream. Because every life needs evolution, some kind of stone-rolling that justifies our experiences, painful or no, and we often live our evolution outside our bodies, through the lives of our children. We put everything we have become into them, hoping they stay safe, alive really, and learn from our knowledge, knowledge that has long evolved past what our parents knew and their parents knew. But my son cannot. He simply cannot. So I evolve for him. I will do what he cannot. I will be happy because I can make myself be happy, like clay into a vase that holds happy, an extra supply because maybe then my happy can be his, because unhappiness cannot not touch him as long as I am alive.
The Patience for Bread
A tan froth floats along the surface as I stir yeast and sugar into warm water. According to Google, the yeast is alive, ready to do the heavy lifting on this bread, if it bubbles when added to the water. There doesn’t seem to be much life here. No bubbles, just foam the color of the organic strained pears I shoveled into Noah’s mouth when he was a baby. That brown goop collected in the corners of his mouth and ran down his chin as he refused the sweet mush, pushed it back out with his tongue. I read the recipe again: dissolve yeast and sugar in water between 100 and 120 degrees. Maybe the water wasn’t warm enough to activate the yeast.
I dig through the drawer that holds all the various kitchen utensils I’ve collected over the years when I had unlimited time to cook high-maintenance meals for just my husband and me. Rummaging past multi-sized whisks and vegetable peelers, a citrus juicer, a melon baller, I find only a meat thermometer, grab it with shrug, and slide it into the scummy liquid. But then I see that the little numbers on the face start at 130 degrees, not the 100 I am looking for. I squint; I mark with a fingernail where the numbers would be if they were printed there; I wait as the indicator slowly rises up the dial.
Already this exercise in bread making seems entirely too difficult, not at all worth this kind of scrutiny of basic ingredients. What if the yeast is not alive? What if the water temp is not hot enough? Wasn’t there a different recipe I had browsed that said to add the yeast directly into the flour? I project my mind into the day and imagine the burden of coming back again and again to the bowl where my bread dough will rest, will rise, where I will poke in fingers, punch the mound of dough until it deflates and wrinkles like the skin of my belly. And I feel the demand of that process lay over my shoulders and I am already exhausted by the commitment.
But today I am testing of my patience. I remind myself of the golden, crunchy crust I enjoyed as a child when my mother made bread. I remind myself of the reliably wonderful smell that will fill the house, regardless of the success of the bread. Today, I am baking bread.
First activate the yeast. Next, add the yeast mixture to more water and then to flour, sugar and salt. Stir until a ball forms. So simple. But the success of the bread all depends on this yeast. For levity. Without yeast, there is no bread. And to have faith in this bland, tan substance, planning your day around the process, desiring a perfect loaf of bread… It’s that looking ahead thing, the dread of the process, which puts the burden on the creating.
The water registers just below the 130 degree mark. Despite the lack of bubbling, I forge ahead, pushing away the doubts, the predictions of failure. Sift the dry; mix in the wet. Whizz it through the food processor until it becomes a ball and threatens to bust the plastic bowl. Out and plop it down on the floury board, knead it like I saw on TV: push with the heels of your hand, turn, and push. Well-known cooks often like to say that kneading bread is therapeutic. Again, I worry about the right way: how many times do I turn the dough…if too many and I’ve activated the dough’s strong gluten, will it be too tough? Will my baked bread resemble a football again, like the loaf my brother threw down the basement stairs when last I attempted to bake bread when I was 14?
I know that I need to trust the feel of the dough beneath my hands. The heat of the oven as it hovers over the burners. The sound of the loaf when I knock on the top crust with my knuckle. This is old knowledge at play here, something like instinct whispers if you listen. I have learned that if you simply pay attention, you will know when a food is done baking by the smell that permeates the house as it nears its doneness. But bread is not cookies or cakes or casseroles. Bread demands a commitment, a faith that not much other food does. First, I must trust the yeast.
***
My son is almost 2 ½, with developmental delays, not yet walking, not yet talking…so the metaphor here is an obvious one. But this bread is not a metaphor to me, instead it is a step. Maybe someday it will be a practice. I’ve not yet mastered the art of meditation, but I know in my own novice way already that the key to surviving this lifelong journey as caretaker, parent, guide, defender, cheerleader of a child with special needs is going to be to stay in the moment. Tend to the process and let the yeast do its work.
I gave birth to a baby boy whom I thought would be perfect. And of course, before genesis, what is perfect but a myth created by Johnson & Johnson ads, the anecdotes told by relatives and friends of the joys of baby smells, first steps, and that oft-memorialized first day of school? The picture snapped as the child stands before the yellow school bus. Maybe another taken as the child ascends the stairs and does a quick wave goodbye over his shoulder, the fear and excitement held guarded on his face. I looked into the future with that same look, boarded the bus of parenthood with some trepidation, but eager to become the person I needed to be to survive middle of the night feedings, choosing a daycare, searching the internet for a miracle cure for stained clothing, teasing a smile from a pouty face at the bedtime. Oh yes, I was ready for the long haul as I perceived it, wasn’t I?
But there is no way to proof an egg or a sperm or zygote or embryo or infant like I can proof yeast. Though we try with folic acid and a quad screen, the many visits for a sonogram, the Apgar tests, the counting of ten fingers and ten toes. We read books and take classes and listen to the stories of other mothers to provide us with a roadmap for this very precarious journey we are about to embark on. And after the baby is born, we pay extra on our cable bill each month to get “Baby TV” to stimulate our child’s learning and we join playgroups to motivate them socially and we start to research the best preschools in case there is a long waiting list. We are a generation of completely prepared parents.
Sometimes, when I’m at my most cynical, I think must I have had “sucker” stamped right on my forehead because I believed in it all. I believed that if I did everything right, I was guaranteed the happy beginning of a new life, just as I had prepared for. But what I was not prepared for was a reality where even the smallest thing—a smile— might be denied me. Sound idealistic? Maybe it was, but…it was also very, very normal.
When you first suspect your child is not developing in the predicted manner, you stare your fear in the face…flinch…and either log onto the internet or pull out a mammoth guide to babies and search desperately for all proof that your baby is just doing things a little later than normal. You tell yourself that normal is on a continuum. And you can still log your child somewhere on that continuum with a penciled hash mark. You believe you can still fill out each page of his baby book as they are presented. Until you can’t.
There are certain things in life in which you can have a reasonable amount of expectation in regard to the product. If I buy a loaf of Wonder Bread, then I expect to get a slightly saggy loaf that smells subtly of plastic, but tastes like childhood when swiped with some peanut butter and jelly. If I buy a peasant loaf from the local bakery, I can expect a thick crust, something that would laugh at jelly in a mocking tone and demand right then a nice block of aged cheddar. For those who aren’t the adventurous type, but enjoy a bit of homemaking, prepared bread dough can be found in the frozen food aisle. Sure there is some thawing and rising involved, and it is raw when you start out, but let’s get real: you are buying bread dough because it is damn intimidating to make dough from scratch.
Making bread from scratch takes time. It requires the baker to commit a part of a day to the process. And in our culture, other than sitting at our desks or typing on a computer or staring at a tv screen…well, we’re pretty much abhorrent of spending half a day doing any one thing.
And this is how time passes, slower than you can imagine, when your infant, maybe nearing his first birthday, doesn’t do anything, or doesn’t tolerate anything, or doesn’t say anything. Every guarantee you invested in so heavily when deciding to have a baby has been stripped away and your future with your child is an open expanse of nothing. Nothing, but commitment. And commitment is neither black nor white. It is neither hopeless nor full of hope. It is both. It just is. And it is forever. It is a weight on your shoulders. It is a dread in your heart. It is the power of loving this little being beyond the moon and stars while being so angry that he has denied you your dreams for him.
I dreamed of sending my son to a language immersion school so that he could learn two languages very young and have the opportunity to travel to another country as an exchange student. I dreamed of ways I would lead him toward his becoming: gymnastics to learn how to control his body; karate to learn how to be strong of spirit and ward off potential bullies; volunteer work to teach him compassion. I dreamed of dancing with him at his wedding, he at least a foot taller than me, and tolerating my tears. To survive these first two terrifying and tedious years of his life has required me to pack away these dreams in a box that will never be reopened.
So, instead you play with scenarios. Okay, so you are certain your hypotonic son will not become the quarterback of the high school football team. You can live with that; he can do something studious. And, well, he might not join debate or the science club, since learning seems to be somewhat a problem. He can do something creative! And so what if he’ll need to start out school in a special needs classroom? We’ll give him what he needs now; he can be mainstreamed later.
But where do the modifications of our expectations end? And when do we take a hold of the great eraser in our minds and allow for the future to make up its own path? When do I allow my son to unveil himself like a late-season rose instead of throwing on a blanket of Miracle Gro and rushing his rise?
Many parents with kids with special needs feel like we are caretakers first, parents second…always tending, never harvesting. Many feel the burden of the invisible golden chain we clip to our kids’ belt loops each time they go out into the world, hoping to pull them back from rude stares, harmful comments, dangerous intersections, lurking new dangers we can’t even predict. And yet, perhaps the greatest cruelty of all is that we had to learn too soon to let go. Since I cannot predict his future–not this child who has run the rails and determines to make his own way–, then I must simply allow the future to spin out like a good thick story.
And like a story, there is something organic to be found in raising a child with special needs, I suppose. Certainly we take advantage of every possible medical intervention, every therapy, every assistive devise, every medication and supplement; not much of that feels organic. And of course, we know we live in a world of typical people doing typical things and that simple reality can make going to the grocery store a nightmare. But, at some point, we are forced to start listening to our hearts, or to our child’s spirit for clues on how to be, how far to go, when to push and when to hole up in our houses and warm ourselves at the stove wherein bakes a loaf of bread. There are limits to our ability to shape our child in our image, or even our image of them, and instead, we are forced to find joy in the discovery of the person they are.
I don’t aim to romanticize the life of a special needs parent or child: looking on the bright side is not a normal act for me. My heart bursts with anger at all the potential my son has been robbed of. In a perfect world (which I think we have proven does not exist, otherwise my son would be walking and running and asking for a popsicle), Noah would be free to go his own way, unshackled from the expectations I couldn’t help but create for him the moment I planned his perfect delivery into this world. But the world will expect much from him, possibly too much, and from me. The world will attempt to label him, categorize him by aptitude, by accomplishment, put him in his place. As his mother, I hope to present him with a blank canvas, perhaps one with a story told in invisible ink, a story we will know only once he has lived it.
***
The dough is on its second rise. It has taken 2 hours of attention and inattention to come this far. With Noah and his dad out swimming, I have organized the spice cabinet, paid the bills and surfed the internet while I wait, visiting the kitchen every half an hour or so to peek at my loaf of bread warming on top of the stove. I poke two fingers into its smooth, floured surface and the imprint stays. Ready to be kneaded once more, rolled, shaped and laid in the pan copiously coated with grease. A swipe of beaten egg painted on with a kitchen brush will bring the crust to a golden brown when baked. I am ready for the home stretch. An hour at 350 degrees and my bread, for better or for worse, will be done.
I consider what I expect when, in an hour, I pull open the oven door and slide out the loaf pan. It will smell remarkable certainly; I can already catch whiffs in the few minutes it has been in the oven. Since it did successfully rise, it should not be flat as a pancake. Since I think I overdid it a little in the food processor, it may not, regrettably, have a airy interior. And I wonder, will this recipe have that slightly sweet aftertaste of store-bought white bread, or will it have a dense, salty taste from the soda, perhaps better dipped into a bowl of soup than smeared with jam?
The bread bakes, and already I am planning my next loaf. A different recipe that includes a spin of honey at the very end or maybe a handful of hearty wheat flour dropped in for texture. I realize that it doesn’t really matter how this loaf turns out. I have watched and waited. I have, to my surprise, enjoyed the process: my hands on the dough, the rise and fall of the loaf, the heat of the oven, the smell of the bread. Because it is in the doing that I find the patience for bread.
Rough Drafts Only 