Turbulence

by Annette Herfkens

  Early on in the year, “spirited” Joosje was put on a little separate bench in the front at the window. It became our bench. It overlooked the Cooper-Hewitt museum. Very aesthetic. To the left we could see our apartment building sticking out. Not as aesthetic. It is the only postwar high-rise in our prewar neighborhood.

  The sun rays come through the window, lighting up the diverse hair colors of the girls in front of us, their braids and tails done almost to perfection. Joosje is nestled under my arm, with messy hair, playing with my bracelet. We all sing with all our hearts.

  It is as good as it gets. Perhaps because every adult is holding his or her own precious child. Perhaps because the mass is overtly inclusive of other religions; the songs seem carefully phrased to that end. Perhaps because the sermon is plain and simple, about love and friendship. Real and relevant to children. Real and relevant to us. This mass, these songs, these voices help me get through some rocky and rough years.

  It is a bit of a miracle. Here are all these mothers and daughters in all sizes and shapes, nationalities even, struggling with life and the pressure to fit in. There might be rivalry and triviality, but all that disappears when we start to sing. A simple song. Every time I was overcome with a feeling of brotherhood and sisterhood, solidarity, love even. I am no longer seeing that controlling mother on a nearby bench, but a human being surrendered to the beauty of the moment. We are no longer ourselves, just parts of a whole to which we all belonged.

  Why did it have to be an exceptional moment? Why could such moments not be the rule of everyday life?

  “We would love to have stars without the darkness,” the priest says. “But life is not like that. There is always a presence of sweet and sour, joy and mourning, health and sickness, light and darkness. We need the darkness to appreciate the light. We have to embrace the dark with the light, the bad with the good.”

  How appropriate. If the moment were not exceptional, it wouldn’t be life. Would I feel the appreciation if I had not known its flip side? Would I feel this gratitude if I had not known loss? Would I cherish this moment of belonging if I had not known loneliness?

  “But our wisdom does not end there,” he continues. “We have the ability to control our focus. We can choose what to look at. If we want to find fault with our family members, our friends, our classmates, our coworkers, we will. But if we look for their good points, we are sure to find them too. We can decide to look at the stars or at the darkness that surrounds them. Life is made or broken by what we consistently choose to look at. We don’t pretend the darkness does not exist, but we can choose to concentrate on the stars.”

  Oh, jungle!

  I look at Joosje. She is not really listening. Of course not, she’ll have to find out for herself. Fill in all those abstractions. As much as I would like to shield her from darkness, I can’t and shouldn’t.

  She’ll have to learn on her own, and I know she can. She realizes she’ll never have the relationship with Maxi her friends have with their siblings. She sees and accepts that Maxi is different and at the same time she appreciates the “normal” moments as a gift and loves anything he gives her.

  After mass everybody goes their separate ways. We all revert back to our roles. Because that is what they are: just roles.

  COMFORT IN TWO WORLDS, 2004

  At first it was hard for me to accept Maxi’s special-needs world and the time I had to spend there. I felt too cool to be there. I separated myself. I thought I needed to adjust my eyes to what I perceived as a dark place. What really happened was my eyes slowly opened.

  Planted in a more “perfect,” if not plastic, world, I learned that “perfect” shields us from a different world. A vulnerable world, an imperfect but oh-so-loving world.

  I begin to look at things through different lenses: two worlds, two lenses. For a while Joosje and Maxi have after-school classes in the same building at the same time. I skip from bench to bench: from Joosje’s dance class to Maxi’s special-needs soccer. I go from chatting about the girls’ achievements and outfits to talking about how to prevent self-mutilation and bed-wetting.

  In the fall, my children always play soccer on adjoining fields in Central Park. I cannot escape the pitying looks from some parents on Joosje’s team. So obviously congratulating themselves for not being on the sideline of the other field, where the goalie is in a wheelchair and the other kids, looking like drugged zombies, are running hand in hand with a volunteer.

  I know what there is to find at that other field. I know I just need to force myself to get up from that comfortable blanket, to remove myself from the easy talk about the teachers and goings-on at Joosje’s private school. I know that I have to walk over to the next field where I don’t need to make an effort to relate to the other parents; we are already connected. I know I will find a mother with tears in her eyes because of an achievement she always deemed impossible. I know everyone there will truly share that joy, without rivalry.

  So why do I still resist? Because it is easier on that blanket. It is easier to do the superficial thing than the rewarding one. Always. The easy thing, not the right thing. Like going for a run or meditating. You know the benefits, but you still have a hard time doing it. Once you do it though, you feel disproportionately gratified.

  It is the same for me during the two years my father is dying. The house in Holland where we stay for the summer is one block away from my parents’ house. My neighbors and friends are relaxed and fun-loving people. It is so easy and comfortable to join them for drinks in their gardens. They have easy conversations—comfortable and safe. Walking over to my parents’ and entering my father’s room means entering a world of very different conversations. About the uncomfortable stuff. About life, death, and the hereafter. “Heavy,” my friends would say.

  When I sit in those sunny gardens, I know I just have to put my wineglass down and get out of that comfortable chair to go to my father’s dark bedroom. To the smell of illness. Each time I enter his room, my father’s face brightens, shedding a different light on comfort.

  BRINGING THE JUNGLE TO DAILY LIFE

  “So sorry I’m late,” I say, running into the large, empty yoga room where my teacher is waiting for me. “There were just no taxis!”

  “Don’t worry,” she answers, with her lovely smile. “Just made it here myself.”

  “I can’t believe what I am busying myself with,” I continue, taking my sweater off and throwing it on top of my big shopping bag. “Party favors,” I say, nodding at the bag. “For my daughter’s thirty best friends, who are coming to her birthday party next week.” I sigh. “And I am having fifteen friends at my house this afternoon for lunch. For my birthday. Upper East Side women with Upper East Side standards. What am I thinking?”

  I roll out my yoga mat and sit down. I zoom in on my new teacher: a six-foot-tall goddess with long, blonde, curly hair. A top model turned yoga teacher for all the right reasons. Or the wrong ones, some might say: She had struggled with everything that goes with the high life. Either way, she had come out with radiance and wisdom.

  “Put your legs up against the wall and calm down,” she says. I follow her instructions, still thinking about the gazpacho I am planning to make, wondering whether I bought too much food. “Turn inward. Use your breath.” I try. “Put your hand on your belly and breathe into it.” I do. “Empty your lungs completely and contract your stomach muscles. Hold it there. Pause. Then fill it all the way up with air, pause, and empty it again. Listen to the pause between your breaths.”

  I fill my belly all the way up with air and hold it. Exhaling, emptying my lungs completely. I push out all the air and stay still. It is as if the inside of my stomach touches my spine. I hold it there. My head becomes light. There it is. The pause, the silence, the center, the gold. The jungle.

  SPECIAL ED, 2004

  Maxi’s fifth birthday is a milestone. For taking that last loss. Giving up that last bit of a dream.

  Five is the age where early intervention
ends and special education begins. Where the records start, countless records. It is now official. Very official. We enter a new world of abbreviations, organizations, and institutions. Of rules and classifications. Another jungle.

  It is time to go to kindergarten. So, we have gone from school to school, from the Bronx to Brooklyn, only to be rejected time and again. When we’re about to give up, I hear of a special ed school on Roosevelt Island. The Child School. Miraculously, Maxi gets in, but he refuses to go on the school bus in the morning, fighting his way out like a stubborn little bull. He does not mind taking that same bus back home, however. Like an eager little horse on his way to his stable.

  We take Maxi to his new school every day on the tram. The tram is the cable car spanning the East River to Roosevelt Island. He dutifully goes down to the tram station with one of us. By the time the tram reaches its highest point next to the Queensboro Bridge, he is wildly flapping with happiness, with his nose against the window, taking in Manhattan’s skyline. On the island we have to wait for another bus, and it can be freezing out there, but I cherish these trips. There is something very special in taking your child to school. Any child. Is it because there is a set beginning and end that makes it so enjoyable?

  • • •

  Maxi is the only one of his kind in this school. But at least he has the chance to be intellectually challenged. I strongly believe that he needs to use his intelligence to overcome his disability. He just loves to use that well-functioning side of his brain.

  And I am right. He learns to read so fast! From then on, we use written messages to communicate, to tell him what to do and what is coming.

  He goes on to first and second grade. With one-to-one assistance. He does his homework and he learns to comply with verbal instructions. With assistance. He still speaks only in syllables. “With assistance.” It is incredible what those involved with special-needs children help accomplish. Teachers, therapists, school district officers—for a less than adequate salary they sacrifice their professional lives to help our kids forward.

  Reflection: What Hurt

  What hurt were the attempts to get Maxi to fit in. The interviews at schools that could so easily get a “better” fit—a different student to admit. The failure of admissions officers to make eye contact when they told us so. Hearing no time after time.

  What hurt were the endless medical examinations to eliminate any physical reasons for Maxi’s “condition.” The MRI scan during which he had to be held down, and which ended in an overdose of anesthetics because he was fighting so hard. Like a little lion. I had to wait five hours for him to wake up, anxiously sitting next to him, afraid he never would.

  What hurt were the blood tests—I have lost count—during which I had to restrain him, crying, on my lap. They always turned out negative, or positive, however one wants to see it.

  What hurt were the dental visits. Brushing his teeth was never an option. To have his cavities filled, we ended up in yet another operating room. His eyes were questioning me, not understanding.

  What hurt was lying awake all night, beside him, waiting for the next day’s colonoscopy. “To exclude parasites and other possible medical reasons” for the soft stool I stepped in every day. The result would be negative, of course, but who was I to contradict the specialist? I would listen to Maxi’s breathing. I would look at his sweet sleeping face, knowing what was awaiting him the next morning. He didn’t have a clue.

  In the morning, he would be babbling happily to me in the taxi. Grabbing my hand while we walked into the building. Rubbing his cheeks against my arm, planting a couple kisses on my elbow. Just happy. Until he realized where he was. Then he would panic and put up a fight.

  It broke my heart every time. It broke my heart wide open. Was that the price I had to pay for a love I could never have imagined?

  Perspectives

  JOOSJE, SEVEN YEARS OLD: I am Josephine Lupa, and this is my story about my brother, Max, who has autism. He is five years old. He can’t talk, but he is a lot of fun. He is nice but sometimes is a bit annoying. But he can’t help it, so it’s OK with me.

  Sometimes he repeats what we say, like if you say to him, “Do you want more pizza?” he might say, “Do you want more pizza?” instead of yes or no. But sometimes he will say yes or no.

  Just because he has autism doesn’t mean he is bad. Maybe God just said, “I think Max should have autism.” So I shouldn’t get too mad at Max, even if he rewinds a show that I like. Again and again. Max is very cute, and there are so many good things in Max I can’t say them all. Anyway, Max goes to a very good school.

  I looooooove Max.

  A few things to remember about kids with autism.

  • Kids with autism aren’t bad people. So don’t act like they are bad!

  • Kids with autism don’t like to be bullied.

  • Be nice to kids with autism!

  DAVID, A PARENT: The first time I ever saw Maxi was at his home. My daughter was having a playdate with his older sister. I guess I’d heard a little about him. I knew he was autistic, but I suppose I expected someone quite different. He’s such a beautiful little boy. Clear, sparkling eyes, an endearing smile, his mother’s radiant blond hair. You almost want to say, “Oh, but he looks so normal!”

  It was only when I saw Joosje interact with him, or rather try to, that I saw someone else. He was there, but not there. The sparkling eyes focused on no one in particular; his attention and movements were totally random, without any purpose. He flailed his hands as if flustered, but it was apparently just his way. After a few minutes he left. It took another ten or twenty minutes to convince my daughter to get her things together and come home. As we left Joosje’s room, someone noticed—uh-oh—Maxi had pooped on the floor. Nothing large or messy, rather like little rabbit pellets. I felt so badly for Annette. Someone went to fetch paper towels. And yet, well, that was Maxi. He’s autistic.

  Joosje and Maxi, New York, 2003

  I can’t remember when in the chronology I was visiting my daughter’s art class. The girls were working on projects—a still life of flowers, I think—so there was a lot of chattering in the room. I didn’t hear the exact comment, but someone must have said something about Maxi. Joosje, without rancor or tears, looked up briefly at the other girl and said, “Now you know what’s wrong with Maxi.” It struck me that he was, or rather his autism was, just a fact in this family. She was not apologetic, self-pitying, or—at least outwardly—angry about it. Nor did she try to hide him. I wondered then how I’d cope with an autistic child, and at the same time, I was struck by how they did. Something quite impressive was going on in that household, difficult as it might be.

  I’d see him sometimes coming with his mother and sister to school in the morning. The head of security, who welcomes the girls every day by the entrance, hollered out, “Hey, Maxi, what’s going on, buddy, huh? Gimme five!” I think Maxi did actually make a somewhat uncoordinated gesture to slap hands. But I liked the exchange. I thought, He treats him just like any other kid, even though, you know, he’s autistic.

  I remember one day, leaving school, I saw Annette crying, being comforted by another mother, Susan, a good friend of ours. She put her arm around Annette and kept saying, “I know how hard it is, I know, I know.” I just naturally assumed . . . well, Maxi, you know, he’s autistic.

  Then one day in early summer, I was walking to the school to pick up my daughter. About half a block ahead, I saw Annette walking with Maxi. It was late afternoon, and they had the sidewalk to themselves. They couldn’t see me, and I realized I didn’t want to disturb them. They were swinging their arms and she was singing a children’s song, something with a lilting melody like “Peas Porridge Hot.” I was blown away. Her voice was so playful and tender, and as she sang, she’d lean into him, almost caressing him with her smile. I realized it was the first time I’d ever seen the two of them alone, when they could just be themselves. It was the first time I understood how Annette copes with Maxi. He’s
her little boy.

  PARTICLES

  PARIS, 2005

  My father dies when I am in Paris. That is where I have my last conversation with him.

  Joosje is at the playground next to the Louvre. We have just admired the Mona Lisa, with two thousand other tourists: It is free entrance Sunday. I feel so claustrophobic I leave Joosje with our friends. I call my father, thinking he would understand, as I got my claustrophobia from him. My mother picks up the phone. From the tone of her voice I immediately know what is happening. She warns me that he is very weak. That she had been sitting up all night holding his hand. That after almost sixty years together, he had given her the most beautiful declarations of love. She says she could not be more grateful for having had this night with him.

  I whisper, in that childish voice my siblings like to make fun of, “Dag Pappie, how do you feel?” He answers with a voice so weak that he seems much farther away than the five-hour train ride from Paris to The Hague.

  “Dag Popje,” which means hello, little doll, “I don’t feel so well.”

  “Oh, Pappie, you can let go now, you have been so strong. You can be strong again and let go,” I say, with a lump in my throat. “That’s how I love you, Pappie. How we all love you.”

  He answers ever so faintly, “Ja, I have to go now. Bye, Popje.”

  I rejoin the group. The people, Paris, the playground—it all seems surreal. I feel physically removed from them, as if I am walking on floaters. I change our train reservations to go back to Holland that same day; we will be leaving after lunch. In my friend’s eyes I see an understanding that both surprised and comforted me. She tells me she had lost her father.