Monday, May 24, 2010


Where is the boy? Where did he go? Sometimes he is with me -- certain and complete. Happy and smiling. Running with wind on his bare shoulders, outstretched arms and muddy fingernails, his head rolling back in waves of laughter, his eyes closed and his mouth wet with drops of spring rain.

He is not here today. He is gray as if pillowcases of storm clouds are shaking out above him, his eyes squint with anger and his fists are curled, like unripe apples from branches.

I walk carefully -- my back holds onto tension like a heavy sponge and my throat is dry and sore. I want him back -- free of anxiety and anger. Free of autism.

But not today. He pulls away from me like the skin of an onion, translucent and vulnerable, falling to the ground. I keep close but some days it is impossible to put us back together and I hold on to what is left and what I can actually keep in my hands and feel with my fingers.

I haven’t looked at the baby book in a long time. It cradles memories like held breath, suspending time and pain for only so long, until I am dizzy and my lungs shatter. I wish it didn’t have to be this way. For him. And for us. I wish he could live without the diagnosis. It is a lot for such a small boy.

I watch his brother grow into a young man, strong and kind. He ties his shoes, packs his lunch, brushes his teeth, puts on his coat and smiles at me, his freckled hand waving to me as he runs to the bus stop. And Sean is near me, unable to put his shoes on correctly, unable to put his lunch in the backpack, unable to brush his teeth well, unable to zip his coat or to ride on a bus with his brother. There is only a mere 20 months between these boys and yet I feel the gap growing greater with each passing day. Their hands can no longer touch - the distance too great.

There is a picture of my boys, together in a moving box, laughing and falling into each other. It should make me happy but lately it doesn’t. I hastily tape my heart back together. Sometimes it breaks when I think of what we had then. We had hope and energy and love, bubbling like water from fountains, spilling with abundance. Did we know it at the time?

I try to remember that life is so much more than what I can even imagine. Sometimes it’s crucial to let go of the past and leave it behind in the photo albums that collect dust in the bookcase. And sometimes I need to remind myself that each day is full of new, budding moments and that I need to hold still and watch the future unfold, like a fresh flower, each petal unfurling into a silky, damp blossom holding out beautiful possibilities to the child playing alone in the fields.

Monday, May 17, 2010

A Break in the Clouds

There seems to be some room for sunshine lately -- both figuratively and literally. The heavy rains of April and May have lightened up, turning everything a dreamy green and making the roses pop with rich reds and creamy yellows. The dogwood, lilac and magnolias are heavy with flowers, spilling over fences, tumbling down branches.

And Sean has gotten better, too. His meltdowns riddled with anxiety have lessened and he is sleeping more, pillow scooped in arms, covers kicked to the floor, breathing steadily in and out.

I’m afraid to talk too much about it. Afraid that I will jinx it and Sean will fall back into the hour long crying jags or inconsolable meltdowns or the anxiety that keeps him imprisoned. But it has been ten days now of a happier child.

I am not only happy for us -- my husband, older son and me but I am happy for Sean. He was struggling so hard in thick of it. The littlest noise or sudden surprise or unhappy moment would send him into a tailspin. He doesn’t want to be like that. No child wants to feel like that. And all we could do is survive. Keep our patience and strength and love for him constant, even during the days when it felt like we could give no more.

The notes from school have gotten better, too. He’s not perfect but he is doing better. And for now, we have to accept that and remember how much better it is this week than a week and a half ago.

It’s also a reminder that we take this life one day at a time. We vow to experience it, under no set conditions, and we trust that we will do our best to make the most of it. A child like Sean reminds me everyday of this -- to take each day generously, to hold onto it in my heart and to always hope for sunshine, even a peek during the cloudiest days. And if the sun doesn’t budge behind a curtain of clouds then let me remember to bring my umbrella in case it pours!

Tuesday, May 4, 2010

A Bad Day, A Bad Week

How does one define a bad day? And a bad week? Sometimes words can fail me but I will give it my best shot.

Dad is going to China. After track we head to the airport. Sean starts asking about the library.

“Can we go to the library? Can we?”

“Airport first, then swimming and then library.” I say slowly.

“No swimming! I hate swimming. The pool is closed! No swimming!!”

This goes on until we arrive at the airport. My oldest has smartened up -- he is wearing headphones and singing off key to some song that I don’t know and that makes me feel really, really old. My husband hands out hugs and goodbyes. I know how much I will miss him. Not for the man he is or the husband he is (he is both a fine man and good husband) -- but mostly for the dad he is. He is the relief pitcher -- quick and steady, especially on the days when I’ve given up the lead -- he jogs onto the mound and throws brilliantly -- gets the save and my oldest and I carry him shoulder high off the field.

The tantrums keep coming, although once we get him into the pool with his teacher he is happy again. My oldest son and I walk to the Dairy Queen -- to self-medicate -- I go with the regular vanilla cone and he orders something that looks like nuclear waste with a plop of ice cream in the middle. We sit in the sunshine and let it warm our bodies and melt our ice cream to that perfect texture. We agree, “No library” and brace ourselves for the fall out. We remind ourselves that he has to earn the library. Clearly he hasn’t earned a trip to the library.

When his swim lesson is done I wrap him in a towel. We have hidden all signs of DQ -- even checked my breath and wiped my mouth (he has a great sense of smell.) My oldest gave up on the lime green sludge and tossed the rest in a garbage can. We get back into the minivan and head to the house -- thankfully no mention of the library (that will come in the evening before bedtime when he will cry, “But we forgot to go to the library! I didn’t earn it!!”)

Monday, Tuesday, Wednesday
A blur. Like letting your windshield slowly bubble up with raindrops -- seeing how long you can go before putting on the wipers -- a modest thrill like a game of chicken with yourself. Sean wakes up early -- hops and yells so loudly. I try to let his brother sleep while luring Sean downstairs with the promise of PBS Kids. Make note -- PBS Kids doesn’t begin children programming until 6:30 a.m. At least that’s the case here in Oregon. UGH. Nick Jr? “NO!” Sprout. “That’s for BABIES!” I find a DVD, it is shiny and I’m drawn to it like a castaway is to a rowboat. “Please FAST FORWARD THE PREVIEWS!” he yells, his ears covered with his trembling hands. I catch my reflection in the television - honestly, I can see the sheet lines on my forehead or are those worry creases. Who cares.

Bad day at school. He has started to destroy his classmates food -- squashed kiwi, smashed banana and spilled yogurt and applesauce. When he comes off the bus he is pacing. The tears are standing on his bottom lids and he runs to stomp in the flower bed. I try to stop him as he charges past me like a bull.

“I forgot my lunch box!! I left it at school. I didn‘t take care of it!!” His lungs are on fire.

“It’s okay. We have another one in the house,” I say calmly feeling my own heart rate building, feeling the sting in my throat and eyes.

“NO!!!! I want MY lunch box!” He turns and runs straight down the street, his arms wind milling and screams spilling out from his open, angry mouth. I nearly tackle him and try to wrangle him in the car. Thursdays is gymnastics. This ought to be interesting.

I can’t stop myself. I am crying telling him that he is being unfair and making bad choices -- by this time he has scratched me and his body is flailing like a trophy fish reeled up onto the deck of a boat.

“We can stop by the school on our way to gymnastics,” I say once I have calmed him down.

“Okay,” he says quietly. He is breathless. It’s off to gymnastics. Clearly, this has taken the fight out of the dog.

I take him into school and talk with his teacher (the loveliest person possible. Sean’s luck is that he has had three really great teachers - Miss Rebekka, Miss H. and now Miss Judy). Before I know it Sean has taken a 32 ounce water bottle and turned it upside down, the water pooling in the middle of the class.

I take him to the sink and make him grab paper towels and wipe up the water. One of the para-educator’s gets the mop, an indication that this isn’t the first time. He does wipe up some of the spill but keeps saying, “Get out of here!”

Not too long after, he grabs the big bouncy pilates ball and hurls it out the door. His school is up on a hill, a steep mount that spills down into a fairly busy street.

“I’ll grab it,” says his kind teacher who is recovering from a pulled hamstring.

“Absolutely not. I’ll be right back,” I say running, too fast, toward the hill and almost falling down the slope. My clogs dig into the wet earth -- clogs -- how impractical. What was I thinking? I should live in track shoes.

A nice man who has put the brakes on his Volvo comes out of his car and chases and catches the ball.

“Thank you,” I say, my voice desperate. “You have done your good deed for the day,” I am almost out of breath. I have an urge to hug him and then secretly beg him to drive me far, far away towards California and then across the border to Mexico. No one will find me there.

“No problem. I saw it coming down and I was like, what??” he said handing me the ball.

Now it’s up the hill, the clogs slipping and my ankles nearly touching each other. And yes, a huge, muddy, round ball under my sweaty armpit.

I give it to Miss Judy, her face so kind. “It will be okay,” she says with such heart I feel the tears aching behind my eyeballs. I don’t say anything to Sean. At this point, nothing I can say can translate the hurt and heat in my heart. I give him a flat, stern look that is completely lost on him.

As I exit out the door I feel the itchiness in my eyes and throat -- moving as quickly as I can to the car so I don’t lose it near the student drop-off line. Please don’t let me see anyone I know. Please don’t let anyone stop me. I just want to make it to my car, to the familiar, faint smells of sweaty hockey equipment and Burgerville wafting through the vents. I am desperate to get into the car and jack the radio up loud to drown out my own crying. I hate the sound of my crying. It is mournful and some how sounds like it is crawling up from the depth of my belly. I make a note to look into a tinted windshield and tinted driver/passenger side windows. I just have to make it out to the main road which minutes earlier I was chasing after a gigantic ball. At last, I drive away, Natalie Merchant singing “These Are the Days” and my achy moans like a dog howling at a full moon are hardly audible. Thank God.

I try to clean myself up in the rearview mirror -- rub my eyes, pinch my cheeks. It’s on to my oldest son’s school where I somehow managed to volunteer to drive some students and chaperone them on a visit to the junior high school that they will be attending. My oldest is growing up and I can almost feel him pulling away. I push the thought out of my mind and race to his school, muttering under my breath and criticizing all of my fellow timid drivers. Pedal to the metal. I hate being late.

Early. Sean is up. Loud. My oldest has a friend sleeping over. I dress Sean and quickly get him outside so the older boys can sleep. We drive to the market and Sean picks out a doughnut that he tears apart like a wild animal. When he is done he has an uneven chocolate mustache and goatee.

It is not even 7 o’clock. On the bright side there is no wait at the Starbucks so my double tall extra hot latte is ready in no time. We cross the street where there is a nice two mile path and begin our walk. The air is perfumed with wet earth and creamy blossoms that gingerly fall from the branches with the slightest breeze. We hit two parks -- do the tire swing, slide and monkey bars. I check my cell phone -- it is after 8 a.m. We head back to the house where the boys are just waking up. I make pancakes and cut up strawberries.

Early again but this morning Sean is sleeping in a bit. I creep out of bed and check Delta’s website. My husband’s flight is not only on time but twenty minutes early. The kids wake up and we head to the airport.

My husband emerges -- I feel the relief instantly. He stands like a tall glass of water and I am a camper lost for days in the desert. Together at last! He gives the kids t-shirts that he has picked up at the Shanghai Expo. They pull them over their heads smiling - they are happy to see Dad. And I am beyond thrill. He takes Sean to track and I mange to go to church with my oldest. I haven’t been to church in ages but am hoping that a friend and teacher will be doing mass. He is not but I am surprised at how much I enjoy the service, mostly the music and the homily.

While we walk toward the minivan I am starting to think that the bad week has passed and maybe there is hope for a turnaround. The dread starts to lift and I reach for my son’s hand as we walk. He doesn’t pull his hand away. I know this gesture is fleeting (he is almost eleven) so I walk hand in hand and feel hopeful and savor this simple, joyful moment.