A Wish for 2011

It has been ten Christmases. Almost ten New Years. You were born in January of 2001 and it is hard to imagine that it is almost 2011. I miss the boy I thought you were going to be. The handsome red head with broad shoulders and laughter. Someday you would break your mother’s heart as you grew up and grew away. I would pine for the soft baby I held in my arms, with eyes fixed on me like milky green-blue marbles and pink, perfect lips. You would grow older and wiser and leave me empty and alone.

But it has been ten Christmases. And almost ten New Years. And you are still a little boy, soft and tender. I have had to let go of the boy you were supposed to be – a heart throb and charmer and remain in love with the boy you are, frozen and still, a five year old trapped in all the makings of a ten year old.

I watch other children watch you in wonder and amusement, your body hopping and snapping like a muscle spasm in a giant’s thigh. I want to protect you and cover their eyes and tell them they don’t know the mighty heart that beats within the walls of your small chest -- a boy who, to know fault of his own, lost pieces of himself, as easily as gritty sand falls through fingers on an ordinary day at the beach. You were somebody one minute and somebody else another.

I loved you from the moment you were born, a twisting, wet seal pup on a scale with a flash of red hair and a determined holler. You were a piece of me, ordered up at a deli counter to be weighed and wrapped and snuggled in my arms, newspaper print leeching onto my fingers, tattooing your story forever on my palms.

If I could make you whole I would. I watch you struggle and cry and I stand helplessly – no parent should go through that. I wish a mother’s love could mend the cracks and repair the seams and keep you whole once more. I can’t help but feel that I have let you down, somewhere along the way and for that I will always feel the rugged braid of scar tissue that interrupts the smoothness of my heart.

But who is to say that it is all final, that you won’t rise like the stealthy Phoenix from gray ashes and shake off the blinding dust. That you might soar once more, your heart and soul scraping against the belly of the sun. It’s the least you deserve, little one, for the frightening and dark world that you have grown to know. Let this new year offer you more hope and opportunity to feel more akin to those who love you and live in this world. Let this new year welcome you home to the arms of those who never tire, waiting patiently for your return.

Band of Mothers

Tonight I went to my oldest son’s holiday performance at the school he attends. The bleachers were pulled out and folding chairs were lined up and down the fading, scuffed gym court. There were performance by violinists, a jazz band, a choir and a singing group. All the oldies and goodies and some old songs with a new twist. I arrived with Sean in tow, my husband travelling for business and no kid sitter available.

Sean was antsy from the start. He needed to go to the bathroom but wouldn’t because the school was too crowded. He pulled and yelled at me and I tried to manage him in an ocean of unfamiliar faces. My nerves buzzed like angry wasps circling a nest and I felt myself perspire under my arms and on my neck. I wrestled him into the gym and found a spot on the bleachers next to the exit. I took off his jacket and put on his headphones to help muffle out some of the noise of the crowd settling into the gym. I could feel the sting of tears burn in the backs of my eye sockets, swallowing hard and trying to breathe my way around the curb of pain that parked in my throat.

He stood up suddenly with his arms opened and said my neighbor’s name softly. I saw her walk up and hug him, his body softening and the edginess fading. He told her he wanted to hop and she asked if it would it be okay to take him for a little walk. I said of course and quickly handed Sean off to her realizing that what she offered to do was quite a favor considering Sean’s uneasiness with the crowd and the difficulties that come with managing an autistic child in a nightmarish situation.

As they left I thought, “What am I thinking? Why did I just pawn Sean off on her like that? That wasn’t very nice of me to do that.”

She came to watch her daughter but instead she was throwing a line into the swell that had gathered around me and she kept me from drowning. A few minutes later she came back with Sean, his hands wrapped in hers and all of his tenderness leaning into her. He was so thrilled to see her there (and so was I).

Shortly after, one of my very closest friends walked up and Sean hugged her too. Another remarkable soul telling me that she could take my oldest home (completely out of her way) if it was too much for Sean. I felt the stress slowly lift with the steaminess of the gym air and felt my heart rate slow down to a more reasonable pace – thankful for the comfort of friends.

We watched the kids sing and dance and I thought how fun it was for my oldest and then I became a bit sad for Sean realizing that he wouldn’t have the same experience. Without the kindness and regulation of my neighbor’s arms around Sean I don’t think he would have even stayed to watch. She kept him in his skin and allowed me to see my oldest perform. I watched Sean watch the older kids, his red hair ruffled by his headphones, his cheeks ruddy and his eyes clear and polished. And I did feel a pinch in my heart - -another rite of passage that he most likely wouldn’t take part in – the idea of a crowd of such size in a packed gymnasium with drums and trumpets and sweetly high-pitched adolescent voices – the stimuli too great for my youngest to ever endure. He would most likely never be a boy in black slacks and a matching shirt swaying and singing with all his heart on a stage with friends. This is one of those moments that I probably took for granted when having children and the reality of the difficulties that my son will face throughout his lifetime leaves me at a loss for any useful words.

He lasted the whole hour and some minutes, much thanks to my neighbor who held him closely and rubbed his back. He was excited to see her daughter who gave him a high five and a warm smile. I couldn’t help think how five years ago, when we moved next to this family, I had no idea how much their friendship and support would mean to us – how much we would come to rely on the goodness of their hearts.

And I am reminded of my dear friend who gave Sean a hug and me a “get out of Jail” free card; who four years ago came up to me after Sean kicked me and yelled at me in front of a crowd at my oldest son’s soccer game and put her arm around me and just walked with me while I cried out of embarrassment and shame. I had only met her once before when our boys got together to play. She rose from a crowd of people that didn’t quite know what to make of the scene unfolding near the swings and with such tender compassion and courage saved me from public heartbreak and gave me a soft place to hang my head and cry.

I am amazed at how the people that mean the most to me in my life are people that I have connected with through Sean. That somehow he is my beacon, a sweeping light in a sea of darkness bringing into focus all the details of survival and constantly reminding me that all we really have in the end is each other and our innate ability to help when we see panicked arms hit the air. That without this little boy in my life I might not know such truth and beauty and strength in people and what a privilege that truly is.

As a teacher reminded me in class the other day -- stars are out all day long but it takes darkness to actually see them. That we are able to see the moon so well in the winter because the trees have lost their shaggy coats and offer up more space between their naked arms. And that without Sean and the chaos that often comes with his disability, I wouldn’t recognize such incredible peace and deep friendship so readily. He is a blessing. I have to remind myself of that, particularly during the dark days, he is a blessing, a torpedo of silver lighting up even the gloomiest night.

A Lucky Mistake

Yesterday I had a calendar mix-up. I looked at an appointment card I had and it said Monday, 12/1 10 a.m. Problem was that it was Monday but the date was 11/29. So which was right – was it indeed Monday or was the appointment Wednesday, 12/1? I called but only got voice mail. I decided it was best to drive there to just be safe. My schedule was sorta flexible and a fifteen minute drive to the east side wouldn’t be too disruptive.

As I drove across the Morrison Bridge to the east, I saw Mount Hood glowing like a polished trophy, cast in shadows of blushing silver. To the north, Mt. Saint Helens popped like a dreamy bundt cake swirled with velvety white frosting. I felt my heart bump against my chest. How lucky I was to see this. Usually late November means that we are socked in with heavy gray clouds, smudged fog and the mountains seem lost to us until late spring. But not this day and I was surprised and happy to be able to catch this seldom seen glimpse. I felt lucky. Like this was a good omen.

At the same time I was listening to a song that I was really enjoying. When the mountains came into my view the words, “I am not the mistakes I carry. I am who I am” sang out from the speakers. It was a strange and serendipitous moment for me. I felt tears in my eyes and my fingers clenched the steering wheel. I have been trudging along these days, feeling overwhelmed and hurried through the holiday madness, watching the slippery sand free-fall through the timer and feeling panicked. And yet, in that moment, time stood still, worries melted and I felt real joy. As if something greater than my small life was saying,

“Slow down. Hang on. Look East. Look North. Listen to the words. There is greatness and beauty in your life and you are not your failures.”

I felt a stirring in my bones, maybe in my soul that this was a moment to be had, an instant to take pause and breathe – to bask in the undisturbed peace that exists in the natural world and to let all the synthetic noise and clatter of the holidays fall silent.

Sometimes I think I might be losing my mind. I am always trying to make sense out of this life of mine. Why things are the way they are. And I can’t help but to trust that grace and beauty and hope are within the distance of my tired, wrinkled fingers. That I can feel them like I can feel my boys heartbeats when they fall fast asleep in my arms.

And I don’t know what that “true” meaning holds for me. I do know that it has something to do with my children, especially Sean. As much as it has been a rough road with Sean, it has been one that has stretched my mind and heart like pulled taffy. He continues to shake me out of my comfort zone of a one dimensional life and pushes me into an ocean of tumble and salt and wonder. I don’t know if I would be as happy and fulfilled as I am with him as I would be without him. That means something, when I consider all the heartache and break we have had raising an autistic child. He is the sweet and sour in our lives. He makes the good days better because we have lived through the rough days and have crawled out on skinned knees and hearts.

When I arrived at the office I was told my appointment was indeed, Wednesday and not Monday. I didn’t mind though. I wasted “valuable” time but what I saw and what crept into my mind and heart was worth it. If I didn’t check on the appointment I wouldn’t have travelled in that direction, to the forgiving east and the vast north, and I wouldn’t have seen the muscle of mountains and shimmering sunlight tickling the horizon. I wouldn’t have heard the song that told me to let go of my mistakes, that they are not who I am but rather a small part of my history. I wouldn’t remember how lucky I am to have all that I have. I am lucky. Despite what others may think of a mother with an autistic child. I am one lucky person.

Here Comes Santa Claus

Last Sunday we took Sean to see Santa. This time we did it differently. No giant shopping mall where the line snakes for miles, weaving through ropes with families pressed against other children and parents anxiously awaiting their turns to tell the big guy in the red suit what they would like for Christmas. We have done this in the past. Sean has some really good strengths. Standing in a long line, packed like sardines, waiting patiently is not one of them. Usually my husband and I would take turns chasing him under the red velvet ropes, catching him mid-hop and pulling him back into line as he threw elbows and arched his back. We were the family in line that seemed to be standing on an active earthquake fault line – swaying into others, my hips and shoulders brushing into moms and dads and my constant apologies falling flat. It got to be such a stressful tradition that we were ready to say the heck with it.

Luckily, we got word of a Santa that was going to be available to kids with disabilities, including autism. This would have to be one understanding, patient, tolerant Santa. The thing with autism is that if you have seen one child with autism then you have seen one child with autism. Autistic children are like delicate snowflakes, similar and yet no two are ever the same. Who is to say how each child may react? Often their reactions differ greatly.

The clinical director, Kathi Calouri and the program director, Eric Hamblen at PACE Place in Beaverton, Oregon (http://www.paceplaceinc.com/) arranged to have a Santa for their many clients who, year after year, have struggled with taking their disabled child/children to see Santa – a typical tradition that most take for granted. In fact, most families with children who have autism don’t even bother. The unpredictability coupled with the lack of understanding and tolerance can make a holiday must-do into a CHRISTMAS NIGHTMARE. It’s no fun when your child hops around Santa and stims, or bites Santa or screams at the elf and the others in line. It’s even harder when your child is not a feisty three or four year old but a growing eight or nine year old. As the parents of these children we can see the fright building in their eyes and the tiredness in their bodies from trying to hold still in the noise and crowd. We are constantly preparing for the impending storms that hit hard while out in public.

We paid for a private fifteen minute time slot to bring Sean into PACE Place. Kathi and Eric were on hand, along with a photographer, a wonderfully charming Santa and an Elf. There was no line, no others milling around waiting for their turns and my child’s excited hopping and yelping was welcomed. We had the opportunity to take a family picture but since my oldest son was at a hockey game and I came in sweat pants and a hair that was in desperate need of a brush, we decided to just get the pictures with Sean. The photographer took a dozen pictures while Sean talked to Santa and hugged him repeatedly. There was no rush, no uncomfortable glances among the others and no heartache for my husband and me. In fact, we were quite happy to see our boy participate in an activity that was slowly becoming impossible to accomplish. Our handsome boy was all smiles enveloped in the arms of Santa and whispering that he would like a Jakers DVD for Christmas.

I am thankful that there are people in this world that share their heart and compassion with families like us – that understand how tricky and lonely the path can be that we must travel and are happy to offer an elbow and share with us a knowing smile. As we drove away, my husband said,

“I’m glad you signed Sean up for that. It’s good to see him so happy.”

Autism makes life a lot tougher for all of us. But it also makes moments like these more beautiful and tender -- a glossy photograph capturing my boy’s smile and happiness while being held in the arms of a kind Santa is one of the most precious gifts.

About A Weak Back

The other day, after picking up baseball cards and missing socks and Halloween candy wrappers from my oldest son’s bedroom floor, I felt a thwack, like the give of a folding chair collapsing. Then I realized that I couldn’t stand straight, my back in the shape of a lower case r, hung over the bottom half of my body. It had felt like a giant punch landed on my lower back and tailbone. Crap. I don’t have time for this. I went to my knees and rolled over onto my back trying to stretch out my spinal column, arms and legs. Then I turned over and did the sleeping child yoga pose. Back to my feet and I could barely stand. I scurried around trying to complete a few more tasks before the carpet cleaning guy was coming. I couldn’t cancel – the rugs had been so neglected that I was quite sure I could start a plague from my kids rolling around on the floor. I pushed the vacuum cleaner, each tug a pierce jab to my back and tried to pick up a couple of chairs and an ironing board and place them on the tiled kitchen floor.

I knew how it started. The past weekend we had gone down to Corvallis for Sean’s soccer match. It was the largest gathering of soccer teams for the Special Olympics of Oregon. Sean was ready to go in his cleats, shin guards and a soccer shirt that fit him like an evening gown – if only he had the right belt and matching hand bag. He is by far the littlest on his team and was one of the youngest at the tournament. He had three games which his team managed to win two and Sean had three goals – unfortunately all goals were scored against his own goalie. Sean didn’t seem to mind as he rolled on the ground, hopped, cheered and clapped – I was certain he’d get a flag for over-celebration but didn’t know if it would count since the other team was already being rewarded by Sean’s misfires.

In between matches Sean would run up to me at full speed, then vaulting his strong, muscled body toward my open arms and I’d catch and spin him. My oldest wanted to get in on the fun and nearly mowed me over. We decided that he could hop on my back instead. So between entertaining Sean and trying to accommodate my growing oldest son by piggy back rides, I had pushed my back to the brink. It only took a few bend overs (BEND AT THE KNEES! I always forget this) the following week to find myself crumpled like a question mark.

I shuffled around the house, greeted the carpet cleaner guy as he surveyed the carpets.

“When was the last time you had these cleaned?” he looked up at me after finishing up in Sean’s room, the worst swag of carpeting in the house.

“A year ago.”

“Really?”

“Yeah. The boys drag everything in the house and with all the rain and pine needles it gets pretty bad.”

“Maybe you should do it every six months,” he said, checking off a million recommendations --- enzymes, extra spot removal, scotch guard...

“Yes, definitely,” I said crouched over like I was staring intently at my own belly button.

In the evening, I made it to my writing class and picked up my oldest from his hockey practice. All and all I muscled through, although my oldest looked at me strangely and asked, “Why are you walking like that?”

I thought of some smart ass comments, like, “trying to mix things up,” or “you don’t think this makes me look younger?”. Realizing it would be missed on him I said, “I hurt my back.”

“How?” he asked almost in disbelief. He might as well throw in, “because God knows you don’t do ANYTHING.”

“If you must know, part of it was from lugging you and Sean around at the soccer tournament. You guys are too big to be jumping on me. And I was cleaning up the garbage on your floor. Is it really that hard to put socks down the laundry chute and to throw out wrappers?”

“I’m sorry,” he said, and he did feel bad seeing me hunched over the steering wheel.

Luckily, today I am feeling much better. The back is stiff but at least I look closer to a forty year old than an eighty year old. I’ve done stretches, filled up a water bottle with hot water every night, took Aleve and slept one night on the floor (my husband suggested this but I think he just wanted the whole bed to himself because I felt pretty stiff the next day.)

It scared me though. What would I do if I was debilitated and couldn’t do the things that have to be done? Sean doesn’t have the capacity to understand that my back had gone out. He has needs and he is short on patience and understanding – it’s the nature of autism. My oldest has a schedule like a CEO of a major corporation. There are hockey games, practices, clinics and school, choir, homework, piano lessons, science projects, friends and birthday parties.
Seriously, there are times I feel like the activities director on a Disneyland Cruise ship. I have to be able to focus and react even though the years are ticking by and the paint is starting to chip.

So what if I did my college term papers with a Smith-Corona typewriter (the last two years we did have computer labs and I owned a couple of FLOPPY discs and printed out my assignments on a charming dot matrix printer); or the current kid-sitter who was born while I was in my early twenties living it up in Chicago. Yes I can get directions from an actual road map and dial a rotary phone and open my garage with my bare hands and drive a stick shift – these are feats my kids will never know as they push buttons, make voice commands and download information to their I-Pods and GPS devices. I didn’t even hold back on the middle school kids who showed up on Halloween night as “80’s girls”, big hair, tights and blousy shirts with large belts and lots of pink lipstick and sparkling eye shadow. I gave them the good stuff, the Reese Cups and Snickers. Secretly I felt really old and somewhat ridiculed and wanted to throw my head into my son’s pillowcase of treats and eat my way to the bottom but I managed to stop myself. It helped that he was in the room and that at first glance all I could see peeking out of his bag were Sour Skittles and an unraveling Tootsie Roll. There’s no saying what could have happened if I was faced with an Almond Joy and Kit Kat.

But I digress. We are all growing older. Each day. I can’t stop it but I can try to make the most of it. I just have to remember the boys are getting big and that I can’t be a human trampoline for them. Other than that, I’ll try to re-commit to yoga and continue to take my vitamins. And to laugh. Somehow that makes everything a lot easier.

A Dog Day Morning

Early this morning I went to drop the puppy off at the vet. He’s six months old and is officially ready to be neutered. There was a woman behind me with a French bull dog, her eyes squinty and red. She smiled meekly and said,

“I’ve been crying all morning about bringing Midge in here for his neutering. I was supposed to do it 3 months ago but chickened out. I feel just terrible.”

I smiled weakly and tried to sympathize with her and her dog Midge, who clearly had no idea what was in store for him, his tongue sticking out and his tail wagging. “It will be fine.”

I was glad she wasn’t there earlier when I was questioning the billing.

“What’s this extra amount for right here, this $140?”

“Well we can’t seem to locate his second testicle. It hasn't descended. It may be in his abdomen.”

“And that’s going to cost an extra $140. Do I have any other options? Does the testicle need to come out if it’s lodged in his abdomen? If it’s in his abdomen can he still be a dad?”

“He can still get a female dog pregnant.”

“Really? It’s just, it’s a lot of money and I have a lot of expenses. I have kids and all. Can I get a second opinion?”

“Well, you are on a wellness plan and you’ve already made payments toward the neutering. Another vet will tell you the same thing and it will cost pretty much the same. We can’t move forward unless you consent and it’s in your dog’s best interest.”

As I talked I noticed the dog nurse getting more irritated by me and my questions. Don’t get me wrong. I like the puppy. He’s oodles of fun and companionship. And I’m all for the neutering – it’s the responsible thing to do and if it means less humping and marking his spot I’m totally game. But learning that he has a unique situation that may require more invasive surgery? The odds once again not in my favor? The puppy’s situation not typical? Seriously?

As my girlfriend, who has two disabled children said,

“When they start with, ‘the chances are minuscule,’ I always have my guard up.“

We are moms who have the one child in one hundred and ten that has autism. We have the one boy in seventy that has been diagnosed with autism. We are part of the statistic. We are not the lucky ones nor are our boys who have to fight everyday to try to feel part of this world.

I sign the papers of consent and hand them to the dog nurse and give him the leash.

“Do you need anything else from me? I need to split and get my kids off to school.”

His arms folded in front of him, he takes the leash, his face still in a frown, “Would you like to say good-bye and good luck to Duncan?”

I must look flustered, my reading glasses perched in my messy hair, sleep still in my eyes. Its 7 a.m. and still dark outside. I wave at my puppy who is more interested in the dog nurse’s shoes and pant cuffs and bend down to scratch his floppy ears.

“Be good, Duncan.” I say, confirming the dog nurse’s suspicion that I’m a crappy pet owner.

“When can I pick him up?” I ask, getting ready to leave.

“We’ll call you when he‘s ready.” He says curtly.

“Yeah, but I have a class tonight and so could I get him by 4 p.m.?

The dog nurse has picked up Duncan, cuddling him and letting him lick his arms and face. I want to tell him that Duncan eats dirt with that tongue and licks sidewalks, garbage cans and curbs but I stop myself.

“I couldn’t possibly tell you right now,” he says exasperated with my line of questioning. “We can call you when he is in recovery. “

“Okay, well my class gets out at seven and I have to pick my son up from hockey so if 4 p.m. doesn’t work I can come by around 7:30 p.m.?”

“We close at 7. We'll do our best to get him ready before 4 p.m. But if it’s later than 4 p.m. you’ll have to make other arrangements.” He says leaving me with the tear stained lady and Midge.

I have somehow offended his sensibilities. What I want to say is,

“I’ve got bigger fish to fry. Yes, my dog is great. The kids seem to like him and aside from his marking the bathmat and Sean’s stuffed animals with his stinky pee, he’s a good dog. But he’s a dog, a family pet. He is healthy except for the hidden nut. And I have a child who has limited options. If I’m going to spend money it will be with my child’s best interest first. It’s the least I owe him. So be patient at my mulling it all over, please.”

I want to tell him that just yesterday at an appointment for my migraines; I told my doctor that I couldn’t do a colonoscopy. He told me I am at a higher risk and that I need to get screened at age forty. I told him if I have an extra four grand to spend it will be on my son. I feel fine and I don’t have time or money to worry about cancer. He told me my insurance would cover it. I said,

“Yes, maybe, once I meet the ten grand deductible which after today I’m looking at only $9800 left.”

He told me to save up for the procedure. I smiled and said,

“Treat myself to a colonoscopy. Sounds like Christmas morning.”

He laughed and said, “I’m serious. Get one in the next year.”

So, dog nurse, forgive me if I seem a little high strung over the billing. Life is about priorities and sometimes we have to say unpopular things that may not go over well with others. We are just trying to do the best we can with our resources and our situations. Yes, I’ll pay the extra money, of course I will. But just because I’m not torn up like Midge’s owner and I balked over the extra $140 doesn’t mean I am a bad pet owner. Just because I didn’t drop to my knees and take my little puppy into a kissy embrace and whisper with tears in my throat, ‘be brave, little one. Mommy loves you,’ doesn’t mean I lack affection. I happen to be a pretty good pet owner and that says a lot considering the pets we owned when I was a kid roamed the neighborhoods and slept in the garage and ate scraps from the table and drank out of the creek.

I just have a different perspective. That’s all. My dog has a charmed life. He eats yummy puppy food, sleeps on a pillow, runs and is joyful. My son, on the other hand, struggles everyday to fit in and to be happy. I can’t muster up the tears for my lucky dog who is getting a fairly normal procedure done. It’s my boy who I cry for when I see how much of life he misses out on because of autism. To me, that’s my worry, that’s my true sadness.

Forgiveness

The past few weeks have been a whirlwind. My husband and oldest went to China together for a trip of a lifetime. They travelled to Shanghai and took a train to Beijing and made visits to many of the ancient wonders -- The Great Wall, The Temple of Heaven and the Forbidden City. They went to a tea ceremony and visited the World Expo back in Shanghai (my oldest desperate to visit the Canada Pavilion to see some hockey. He was equally impressed with the Czech Republic which built part of their pavillion out of of hockey pucks -- travelling all the way to China to see hockey? Go figure.)

After nine days they returned home for a day, each of them heading out the next day for different trips. My husband was travelling to Las Vegas for a trade show and my oldest was going to Outdoor School at a camp in the Columbia Gorge near the Sandy River. Another week without the anchors at home. Another week feeling adrift.

Meanwhile, Sean seemed to struggle more in their absence. He liked having me to himself but I was becoming worn down and less patient than usual and that made him frustrated and unsorted.

There was one day that was particularly difficult. I went to get Sean from the bus and he seemed to be in good spirits. We took the puppy for a walk and stopped at the park, the weather was unusually sunny and crisp. He seemed happy.

When we left to go back home he started to unravel. I don't know what it was but he became anxious, his body going limp in places and his mouth twisting. He started to pull at his pants and lose his arms in his sweatshirts, caving at his knees and hitting the ground followed by whining, then yelling and screaming. I went to him, the puppy pulling in the opposite direction, but Sean rolled away in the middle of the park driveway, coming up to his feet and running into the street. I panicked. The puppy wanting to go the other way, my left hand engaged with a leash and only my right hand free to reach Sean.

"Fine," I said, "you have your fit. I'm going back."

I thought he'd follow me, shrug off his sticky thoughts or whatever was making him so upset, and turn to catch up with me but he started running after a car. I could feel people starting to watch us, his bare bottom peeking out of the top of his pants, his arms lost in his shirt, and his sleeves wagging like wind socks. I rushed back to him, dragging the puppy with the leash, and righted his pants and tried to grab him with my arm, pulling him into me. He was thrashing and scratching, his eyes not his own, but wild and flecked with yellow, watery with tears. I pulled him as far as I could toward the parking lot where I had parked the car. He continued to scream, scratching my shoulder and I could feel the burn and the sharpness of his nails (I meant to trim his nails the day before) and dragged him to the car.

Any body walking by might have thought I was abducting this child. He was hitting me and snarling and I was strong-arming him into the car, pushing him down into his car seat, my shoulder and arms chalky white from scratches, dotted with blood. I couldn't talk because I was holding back my tears and anger and disappointment.

I buckled him in and got into the car. I was certain people were writing down my license plate numbers reporting me to the authorities -- kidnapping of some sort. I couldn't drive right away. I was trying to take deep breaths, blocking his arms and legs that were forcing there way past the head rest of my seat.

"Stop it!" I yelled. "I can't do this, Sean. I can't do this anymore," and I felt the tears come, my voice hyperventilating and my body shaking with fear.

I drove a bit down the street and called my husband.

"What's going on?" he said hearing the shrilling yells.

"He's out of control. I don't know why. What am I supposed to do? Do I take him to the hospital? Should I take him to a police station? What am I going to do!?"

My husband was in Las Vegas, unable to do much and only imagining the chaos.

"I'm sorry. Can you make it home with him? Just make it home and try to calm him down when you get there?"

"I'm tired. My arm is bleeding. I am so tired of this. We have to come up with something else. This isn't working."

In the back Sean screamed, "I hurt my Mommy! I hurt my Mommy!"

"I know, I know. Just call me when you get home, okay?"

I drove further and Sean came up between the front seats and plowed his small fist into the side of my nose. The pain so sudden and unexpected that I stopped the car and pulled over to cover my face. More noise and rocking from the car. Surely somebody is calling the police. I took another minute to get him back into his carseat and drove the rest of the way home, my nose and arm flaring with pain.

When we pulled into the driveway, he softened. He was muttering over and over, "I am sorry I hurt my Mommy. I am sorry."

I brought him into the house and hurried over to my neighbor's. She has a lot of experience in social work and knows our situation well with Sean.

"What do I do? He was out of control and loud and screaming. I think someone called the police. I don't want them to come and take him away. I don't want any problems."

She assured me that that would not be the outcome. She told me to call his teacher to see if he had a rough day. Follow up with his doctor to see if I needed to take him in. I did both -- leaving messages with the school and the doctor's office while he lay in a heap on the floor.

When he settled down I ran him a bath and fed him. He seemed hungry and tired. He thought he left his backpack at school but he didn't. "That is why I was so sad, Mommy. I thought I left my backpack on the bus or at school."

When I tucked him in I sat down on his bed and said, "Sean, you can't be like that, do you understand? You could have hurt yourself or somebody else. You hurt me, Sean. You scratched my arm and you hit me hard."

"I scratched you?" he said, surprised. How lost he had gotten in his rage.

"Yes, and it hurts." I showed him my arm, dotted with scratches and cuts, swollen at the top.

"No more, Sean. You can't be like that. You have to control yourself better."

"Yes," he said sleepily.

The next day after school he was stimming, going through his routine questions,

"How do you spell Brad? Is there a P in Brad? How old is Duncan?"

I went about putting dishes away, robotically answering the questions. Then he became silent and I looked over at him, his eyes big and doughy staring past my shoulder,

"I am so sorry I hurt you."

I tried to get his eye contact and moved my head into his field of vision,

"Are you talking about yesterday? Is that what you are sorry about?"

His eyes locked with mine, and I saw real pain and compassion in his eyes,

"Yes, Mommy. I am so sorry I hurt you." Then he turned away sharply and began hopping and continued with his questions.

For a brief moment, I saw what keeps me connected so tightly with this child. I clearly saw the boy that is locked inside under layers of tangled brain wire, impulses and neurological storms. I heard that boy calling out from underneath it all, telling me that he didn't want to be the way he was and for that, he was sorry.

"You know I love you, Sean. And I am always going to love you. That's why it made me so sad. If I didn't love you so much I wouldn't care. Do you understand?"

He looked up, his eyes unfocused and said, "Duncan's a baby?"

I stayed with him, "You understand, Sean that I love you, right?"

He was looking at the ground, his fingers moving and he said, "Yes. Yes. I love you, Mommy."

That night when I tucked him in he ran his hands over my arm.

"What is that?" he said, over the edges of the scrapes.

"It's from the scratches when you were upset the other day."

He was quiet, I could hear his breathing and he said firmly, "I will never do that again. I won't."

I pulled his covers up, and brushed his mop of hair from his eyes.

"I know you don't want to be like that Sean. You just have to keep working hard, okay?"

With that I kissed him and turned off the light.

A friend, who has a child with autism, said to me once,

"If I was married to somebody who treated me like my son does I would leave him. I wouldn't stay. But he's my son. And he's autistic. What choice do I really have?"

Thinking back to that I realize we do have a choice. We can run and carry our hearts over our heads, protected and safe from being smashed into a thousand tiny shards, or we can make peace with what it is and stay. Like so many parents in similar situations, we grip our hearts with hands of armor and we hold our children with our achy, scratched arms and we love them the best we can, the best we know how. We learn to let go of the darkness, to release grudges and to not take it too personally. We have to search for love and forgiveness and bathe their tired souls in what we can tap into on those particular days. And in the end, we amaze ourselves at our ability to stay steadfast with our love. We don't run, we stay. Everyday we make that choice. To stay and fight for our kids.

A Thank You to Dad

Two weeks ago, my husband and I headed out 84 East toward the twist and turns of the Gorge, the Columbia shimmering and the firs stacked along the hills, swaying in a fall breeze, shoulder to shoulder like a church choir. We had a suitcase and a backpack and we were leaving it all behind. By it I mean responsibilities, parenting and worry.

We passed over the Bridge of the Gods, a steel and wood bridge stretching across the river from Oregon to Washington. We drove past the Honey man who sells raw honey and candles out of the hatchback of his ancient VW Rabbit. Then turned left into Skamania Lodge, our destination.

A good friend of my husband's was getting married and had chosen this beautiful spot nestled along the river. The wedding was held out on the green sprawling lawn -- the sky electric blue and a sun so fierce, that they seemed to melt against the thick forests and turn the river a silvery black.

All and all, we had so much fun. To be able to eat good food, dance and laugh without the worry of Sean, was a gift we had been given. No 2 a.m. wakeups -- we could sleep until our bodies felt rested. And for me that was 10:12 a.m. the next morning! The person so gracious to offer this to us was my Dad.

Now this is no easy feat for my dad. For starters, he's a busy man. He still works part-time, he also tutors children in English, he manages to make it to most of his grandkids activities (counting my kids - he has been a grandfather to twelve children and one more is on his way this month.) He is a good and dutiful husband and spends time with friends (still manages to make breakfast once a month with a group of guys he went to Catholic Grammar School with -- Hello? He was born in 1933!!) He is seventy seven years young and luckily he swam out of a robust gene pool (you should meet his 90 year old sister!) and looks and acts much younger than his years.

Not to mention, he doesn't like to fly, his hips get stiff and he's a worrier (I can thank him for that.) But when I asked him he didn't stammer, he didn't say, "Ahhh, let me think about it." He said, "Yes." This gracious, good man said Yes.

When my sister booked his ticket I felt a rush of gratitude. It is no easy feat to watch Sean. But my dad would rise to the occasion. When we picked him up from the airport his eyes were red and tired. He was on Midwest time and it was almost 11 p.m. west coast time. And yet, he managed to light up when he saw the kids and me. Oh and how happy my boys were! They had anticipated this day and now it had finally arrived.

The first day he helped me get the boys off to school and then we went out for breakfast and a long walk. My husband was travelling so my dad filled in and when the kids came home he took them to the grocery store for all of the illegal contraband that they only get when they are with their Papa -- frozen chocolate chip waffles, Corn Pops cereal, Rainbow Go-gurts and Keebler graham cracker cookies. My oldest was a bit sheepish about the splurge but Sean was ecstatic -- he'd been holding out since his summer visit waiting somewhat patiently for his Papa to let him scavenge the grocery aisles.

My dad took us for dinner insisting that I take a break from cooking and encouraged me to have a martini with my meal (it didn't take too much encouragement.) He helped me get Sean ready for bed and he and my oldest stayed up a little later talking and reading.

When my husband came home we made steak and baked potatoes and when Sean seemed sluggish my dad tucked him into his bed. I went to check on them. I saw Sean wrapped in covers in the bottom bunk bed, his head peeking out and my dad, on his knees, gently stroking Sean's hair off his forehead. When my dad turned to me I could see his eyes were wet with tears and he said kindly,

"I want Sean to know how much I love him."

Sean's eyes were closed, the hum of the fan and the violins from his music softened the room.

"I think he knows, Dad," I said and I went back to the table and wiped away my own tears.

"Are you okay?" my husband asked, stacking plates.

"I'm not sad. I just want to remember something really sweet and wonderful. I want to hold onto this perfect memory of my Dad with Sean."

And I did. I still tear up thinking about how tender my father was to my boy. My oldest is easy to love. He is fun and kind and interesting but Sean isn't easy. And my dad has always made every effort to let Sean know how much he loves and cares for him. He calls the boys at least twice a week and he always talks to Sean.

"Papa, what does Jimmy Neutron start with?"
"You get me a Justice League toy?"
"Papa, may you take me to Target?"
"Papa, when's Clare's birthday?"

It's never a two-sided conversation, however, my dad doesn't dismiss how much this actually matters to Sean (and believe me it does). I listen to Sean rattling off his questions while I try to get a few things done and then take away the phone from Sean (it's always a struggle -- "I talk to MY PAPA!")

I usually say,

"Thanks Dad. He really likes to talk to you. And I got a chance to put the laundry away!"

My dad always says, "He sounded great." or "I'm glad I got to talk to him."

He sees Sean as a whole person who has the same wants and needs as my oldest. In my Dad's eyes Sean is not broken but rather a boy full of life and potential. And that means everything to me.

So for this post I give thanks to my Dad. Thank you for sharing your heart with so many. And thank you for loving Sean for the boy he is. Thank you for always teaching me how to simply love free of conditions through your actions as a friend, son, brother, husband, father and grandfather. And thank you for being remarkably kind and good.

Oh, and thanks for flying 1800 miles to Portland and letting us get out for a whole weekend. We really needed it and we couldn't have done it without you.

You rock, Dad. xo Squirt

Early to Bed, Early to Rise

The activity level at 5 a.m. this morning was far too high for such a time of day. Sean went to sleep early with a low grade fever and cough. He missed dinner and dozed off as the sun was slipping off the horizon.

The evening was quiet, the soft tin whistle of the Irish music Sean likes to fall asleep to, drifted down the hall. We had the evening all to ourselves knowing full well that the morning would not be ours.

And here lies the problem. If we were smart we would have cleaned up dinner, talked for a bit and turned into bed early, knowing that the morning would come painfully early. And yet, the opportunity to open up a bottle of wine, let the dishes camp out a bit on the dining room table and just lounge on the sofas talking and laughing was too much to pass up. So we did.

My husband was out of town all week for work and had arrived home in the evening. My dad had arrived into town Wednesday night. The luxury to have all this time to ourselves, to spend time together without the interruptions ("What does Knock Knock start with?" "Papa, you take me to Target?") was like a saucy piece of fruit dangling in front of our hungry eyes. So we ripped it off the aching vine and gobbled it up with feverish hands.

Falling into bed, joy bubbling in my veins from my husband's return and my dad's visit, I fell fast asleep. A hard, heavy sleep, like a mallet hitting me square between the eyes. An hour later, I was jolted awake by the cries of the puppy in his "crate" (really more like a jail cell.) I lumbered out of the bed, the kind jailer that I am, and took him outside to relieve himself.

The idea of putting this bundle of licks and fur back into his "crate" seemed unlikely. He crawled up in my embrace, his ears pinned back, eyes swimming in devotion and affection -- all this just for being alert enough to hear him and help him. How I longed for 1/10th of that appreciation from Sean during the nighttimes of holding him after a bad dream,reassuring him that Batman isn't real, his face wet and hot and his angular body like a bag of hangers in my arms, poking my ribs and knees.

The puppy was a present for my oldest, a reward for good grades. He promised he would take the best care of him, he would keep his grades up and he would limit himself to one hour of television. He's held up part of the bargain but the part where the puppy goes for a nice long walk, leaves a mess on the street and the person has to take a baggie, gingerly pick it up and do the walk of shame until a garbage can presents itself -- that role has been assigned to me. I used to secretly mock those people. Now I am one of them.

So after I bring the puppy in from the crisp middle-of-the-night air, I settle back into bed, the puppy curled up against me, his hot breath on my neck and give into sleep.

Three hours later the familiar, squeaky voice enters the room, "Hi Mom,"

The puppy's ears pop up like satellite dishes and I rub my eyes and try to make out the squiggly red lines on the digital clock -- 4:45. My husband turns over and edges toward the left side of the bed and Sean climbs in between us and begins his talk, burying his elbows, chin and feet into our sides. The puppy growls as Sean tugs his tail and I will myself awake.

"I'm hungry," he announces to no one in particular. I get out of bed and take him to the kitchen to make him some breakfast, the puppy whining in my absence.

While I am making him breakfast my husband peers into the kitchen with tired, small eyes.

"Go back to sleep," I say, "it makes no sense for both of us to be up."

"I'm awake. I can't fall back asleep. Why don't you go back to sleep." he says, rubbing sleep out of his eyes.

"I can't go back to sleep either. I'm totally awake."

We make coffee and try to keep Sean upstairs. He constantly tries to break for the downstairs to shake awake his Papa. We take turns slugging down coffee and detouring Sean as he bee-lines to the stairs.

When I am finished with my mug I go to wash it and read the fading gold cursive writing on the inner lip. It's a coffee cup I got at Target after Christmas, a glittery holiday-ish cup that was on clearance. It had little shiny stars glued near the handle (which have since fallen off -- guess it wasn't dishwasher safe) and glittery curls of salmon pink and tangerine orange licking up the sides. And inside, written like fading ribbon reads,

"Gratitude leads to joy which fills our hearts with love and peace."

I stood there a moment, my eyes aching from lack of sleep and my lower back stiff and then smiled. Sometimes I need to be reminded of all that is good and tasty in my life -- whether it be seeing my dad, my husband returning from a week of travelling or the coffee warming my insides, keeping me alert for the moment.

My boy runs back and forth, a flash of red hair and pale skin and muscle, his eyes bright and laughter spilling from his handsome face. The puppy chases him, nipping at his heels, his tail wagging like a windshield wiper in a storm. The mug from Target stays in my hand, almost like a held prayer, and I am reminded of all that I have and I can't help but to keep smiling, tiredness lifting like fog from my head, my heart.

And So We Tumble Into Fall

It is that time of year - the hustle of school buses, the morning air so crisp that I shuffle into my robe pulling it tightly around me as I wait for the coffee to brew. Coldness settles on the windowsill and the box elder bugs are starting to huddle on the screens searching for warmth. Even the bees are flying slower and stinging more impatiently.

Another summer has gone by, slow at times and other days passed with the quick, focused speed of a bullet train. My boys wake earlier, sleep in their eyes trying to adjust to the inky morning darkness, their limbs and eyelids heavy.

I scramble eggs and make toast and cook bacon, feeling my life coming back to me, my time returning. And perhaps I do this too greedily, forgetting how quickly this time does pass and how even the rough days will somehow be lost to me and I will probably miss it. It is the hard days that make the good days taste that much sweeter.

The summer was tough but I shouldn't let that put an overcast on the entire season. We did have some family fun. We camped at the central coast of Oregon near Florence surrounded by mountains of sandy dunes that led to the tumble of ocean. Sean scurried up and down the dunes, sand spraying like silver glitter.

We went to the high desert and slept in cedar cabins and ate corn and flank steak with friends. We hiked a dormant volcano, trudging and balancing up the sharp edged and polished black obsidian rocks.

We went to the Cascade mountains, and set up camp right next to a fresh, clean alpine lake. At night the sky throbbed with fat, electric stars, our faces sparkled in starlight as we tucked into the tent.

These were definitely glimpses of grace and beauty, reminding us that we live in splendor and that if we are still and far away from the noise and bustle, we can bear witness to the movements of angels and hear the hushed whispers of earth and sky. And although the moments were fleeting, when I close my eyes I feel I can see those stars as they were, unreal and pulsing, and pick them one by one like fresh, dewey apples, a bushel of stars to hold in my heart.

Losing Sean

Today I felt numb. Sad and numb. The reality of our situation over the past month has been on my mind, gnawing at me periodically during the day.

I am losing Sean. I always seem to notice this in summer, when the heat pours in and stills the days. When the summer is coming to a close and my husband and I look at each other like runners on the last lap, our hamstrings locking up, our bodies falling forward and our knees and elbows bursting with scrapes and pain. It's as if we have fallen to our knees trying to make it to the end -- not concerned anymore about our time or placing but only about being able to stay in the race and cross the finish line. It's the very least we can do for our son.

I am losing Sean. I am with him all day. I try to finish laundry, sweep the floor, make a phone call, clean up the dishes and he is there, next to me, his big eyes staring up at me and his voice, always a stammer, "Y-y-you talk to me, Mom?"

I try to let go of the heat and mess and stress and give him my attention, slowly I answer, "Sure, Sean, what do you want to talk about?" knowing full well what our conversation will be.

"Is there a Pixar movie that starts with a T?"

My mind scrambles and answer Toy Story.

Then he asks, "Why don't I have an L in my name?" I tell him he just doesn't but tears spring to his eyes, "But I want an L in my name."

We've gone as far as "renaming" him as Seanly -- he also desires a Y very badly, too.

He goes on and on about his favorite topics.

"I can kayak in the deep blue ocean?"

"Remember that stupid time in Kaneeta?" (how could I forgot -- it was Mother's Day weekend and he had a meltdown because it was too crowded.)

"I can like the Justice League?"

"Is there a person's name with a Q?"

"What's your favorite sea creature?"

I have answered these questions and others like it probably over 1,000 times (Yes, you can kayak. Yes, I remember Kaneeta. Sure you can like the Justice League. Quentin, Quinn, Quimbley, Queenie. Dolphin, I guess.) And so it is that I find myself losing bits of my son and bits of myself, swirling quickly down a dark drain with no hope of stopping it.

My neighbor stopped by to check on us. Kind and discreet. She came up my back porch steps, her eyes tender and I felt my own wet.

"How are you guys doing?" she asked.

I felt my heart tear a bit. She has been our neighbor for five years, ever since we first moved to Portland. Her daughter, older than my kids, played with Sean, outlined his hands and feet with chalk at the block party, helped him carve his pumpkin at our first Halloween and went swimming with us in the summers.

I said to her, "I didn't know it would be this hard."

I am lucky to have such kind good neighbors who try to rally around us. Some of Sean's behaviors are really intense and hard to contain. She let me know that she loved my kids, loved hearing Sean playing earlier that morning with his Superman cape chasing the cat around the yard. She told me that whatever we needed that she and her family were always there for support, help or an ear to listen.

"Thank you," I said. "Thank you very much."

And yet I still feel like I've let everyone down.

Yesterday, Sean wanted juice and I told him no more juice. He threw a bottle at me and I found myself boiling with rage, my back throbbing from where the bottle hit. I grabbed him by his shoulder and pushed him into his room. He thrashed and yelled, opened his window and tossed a couple of books out onto the lawn. I ended up having to subdue him by getting him on his back, sitting over him to pin his legs and holding his hands down above his head. I just held him, watching the wildness leave his eyes and face.

"I will let go, but you can't hit me, you understand?"

He nodded, "I understand."

He went to touch his hair and I thought he was going to hit me and I felt my whole body flinch and I covered my face. When I took my hands away, I saw him for the little boy he is, flushed cheeks, damp red hair, bright eyes, "What's wrong?" he said, his voice soft like butter.

I tucked him into bed that night and when he drifted off to sleep I held his hand and prayed to somebody, anybody to release him from all the struggle and pain and frustration that he has had to deal with his entire life. His small, sweaty hand, the pads of his palms swollen with blisters from the monkey bars, so small and full of promise and I couldn't understand why he had to carry such heaviness in his lifetime.

"Give him a chance," I whispered over the hum of the fan. "Please, he's my boy and I can't bear losing him."

Check Engine Light

The other day my husband came home after driving the beloved loser cruiser (powder blue mini-van -- a model of car I swore I would never own let alone drive...) was in peril. It had smelled funny for a few weeks and was leaving sweaty spots on the driveway. We kept putting more oil in it realizing that there was a leak of some sort. Finally, the light came on to tell us to cut the crap and take the car into the mechanic.

Luckily, my husband prefers to ride his bike to work so being down a car wasn't a major problem. And luckily it turned out to be a minor problem -- a crack in a gasket and a sensor working improperly. The loser cruiser, with its 110,000 miles and counting, would continue to roll forward. Paid off, covered with Cubs, Blackhawks and In and Out Burger bumper stickers, a generous dent on the back door, and riddled with scratches along the sides, the van would continue to be a part of our family life -- toting kids to school, weighed down with rafts, tents and coolers in the summer, and dolled up with snow tires chugging up the mountain passes for skiing and hockey tournaments.

I thought how nice it would be if we humans had Check Engine Lights illuminate in our chests, reminding us to take it easy, slow down and mend the cracks. I think our family has been sailing along most of the summer with our invisible Check Engine Light on and yet we haven't pulled off the road, popped the hood and let the cloudy steam rise off the boiling engine to get a better look at why we feel so out of sync. It's a luxury we really haven't had.

Summer has been hard. I am feeling lost in the long days. I spend most of my day with Sean trying to keep his moods even, his body regulated and his thoughts happy. Meanwhile, I have neglected my writing, chores and most sadly to me, my friendships. It's as if we have to put so much on hold. Our child doesn't do well in crowds, doesn't like to be in public much, can't socialize well and even trips to the pool or parks have ended disastrously with Sean being out of control or yelling or hugging strangers.

My older son is struggling with this. Sean is getting bigger. He is harder to manage. And he's quick and fast and can't control his impulses. We take turns watching him but inevitably he gets away from us, whether its jumping on a person sitting on a bench or hugging a woman's knees, most trips out can end badly.

My husband and I have grown thick skins -- practically Teflon. By my oldest is getting to a point in his life where he is much more aware of the dynamic and struggles with the love he has for Sean and the embarrassment that he often feels at how his brother behaves. It breaks my heart sometimes. I know my oldest is kind and good and tolerant, mostly because he has had to be in order to be a part of this family, but I can't help thinking how some days must be very tough for him and how I wish I could make it all better.

So I guess we all continue down this bumpy road, our Check Engine Light beeping and blinking and yet summer doesn't afford us the time or opportunity to fix ourselves. We have to keep making little quick mends until fall when school begins and we have the luxury of time. Twenty seven days and counting...

The Dream House

I had a dream again about the old house. It was the first house we bought after we were married. It was the house we brought the boys home from the hospital after their births. An old dutch colonial that was previously a barn back in the 1850's. It was cut horizontally and moved across the street in the 1920's and made into a home. We bought it in 1996 and lived there for eight years, replacing windows, a boiler, a water heater, the roof, plumbing and God knows what else. We had an invasion of digger bees one summer and worried about flooding after the grassy lot across the street was filled in with expensive town homes.

In my dreams of the house I am sneaking in the side dutch door, swinging open the top window and unlocking the door from the inside. I move about the house, the hickory floors scuffed but shiny, past the knotty pine walls and the built in maple shelves. I creep up the old staircase and down the hall to the baby room, the walls still a tender celery green, the wicker rocker chair facing out but there is no crib. The boys have grown and moved on. I am sad for a moment but then out the window I see the current owners coming in the front door. My heart races and I am in a panic and when I move down the hallway the floorboards creek and I shrug into a closet. "I shouldn't have come back," I think to myself and then I wake up.

It's not surprising I had the dream again. I had been back home and our first house was a mere ten minutes from where I grew up. I drove past the house. The new owners pulled out the evergreens and shrubs in the front and put in an above-ground pool in the small backyard. They kept the wooden blinds, the front door green and added only tiny improvements to the screened in porch. I felt strange driving past it, sneaking looks like I was casing the place. It was an old house sold "As Is" and I didn't want to meet the new owners and be regaled with the improvements they needed to make. I also wanted to keep the memory of it frozen like I had remembered it. A simple, loving home where my two boys spent their earliest years.

I drove past it twice and then went past the train tracks, the commuters waiting for the 7:25 a.m. to Chicago, newspapers folded under arms, briefcases slung over shoulders and coffee balanced in hands. I had done that commute for years. I couldn't help thinking where did all the time go?

I often think how little we knew back then. We had the world at the tips of our fingers. We had two healthy boys within a 19 month span. I had quit my job and my husband had started his own business. I had so much to be grateful for. I had no idea that there was anything wrong with Sean. He was strong and handsome. He walked early, moving nimbly around the old house. His huge eyes always met me before the rest of his taut little body caught up. My boys posed for Christmas card pictures in the front room sofa, my oldest hugging his little brother, their smiles wide and beautiful. They tumbled in the silver maple leaves in the fall, piled snow from the driveway into forts during the winter and followed me to the train station to see their dad come home from work during warm summer nights.

The house holds all that for me. The early days before life got complicated, before needing to learn so much about autism, before knowing how our lives would forever change. By the time we had put our house on the market, I had known, deep in the belly of my soul, that my son had changed. He was no longer the happy, engaged, laughing baby. He had become a more serious, less flexible and easily agitated toddler.

The year prior to our move he qualified for early intervention under the developmental delay category -- his speech was behind and his social skills were impaired. He had done a year of special education and a summer camp for children with delays. I had known what was to come. I wanted to come to terms with it all privately, to absorb the impact without neighbors, friends and family with me. I wanted to leave Illinois and to start over with what I knew was to come. I had to say good-bye to the home that held such hope and dreams and promise for us. I had to walk away to a wider, open space where I could start from scratch.

I have always known that I was to live here in Portland. Maybe not forever, but at least for part of my life. The first time I came to the Northwest it was like walking into the arms of a lovely, good friend who I had missed for too long. Strangely, I felt I had come home.

The hardest part was leaving my family and friends behind, saying good-bye and moving forward. And saying good-bye to the innocence of that life, to the bliss that moved like purposeful and easy breezes, in and out of our daily lives.

So I dream about the old house on Center Street. The silver maples and birch trees dotting the street, the lawns shaved into green postage stamps and the baskets of petunias swaying on the light posts. And the winters where the snow caked like creamy frosting on the roofs, the paper lanterns burned peacefully on the front porches during Christmas night and the mournful whistle of the last train out of the city echoing through the bare arms of cold trees. I keep my baby boys there, remembering their sweet red cheeks and pale eyes peering out at me through the crib bars, the old floors creaking as I walked toward their outreached little arms, pulling them into me, safe and warm.

Road Trip (From Hell)

I suppose we might be gluttons for punishment. Or perhaps really disillusioned people. But somehow, after weighing our options, we decided that it made most sense fiscally and pragmatically to DRIVE to Chicago from Portland, Oregon for our summer trip to my hometown.

As the day drew near, we began to rethink our launch strategy. Should we just toss the kids in the car after dinner and begin our trek? Would they sleep in the car and allow us to cover more ground? We had planned to make the trip with two full sixteen or so hours a day of driving. It may be the equivalent of swimming in a tank of sharks or particpating on the show Fear Factor and having snakes dumped over us while we lay in coffins protected by goggles and a lycra body suit (Lycra! god help me - maybe worse than the snakes?)

We decided that was our best option. The boys were excited. School was out and the highly anticipated trip to see all of their cousins and grandparents had finally arrived. My husband drove the first 6 hours stopping in Ontario, Oregon near the Idaho border for gas and coffee. All three of our heads popped up like jack in the boxes -- my oldest spying the Arby's at the gas station and Sean asking, "We are in Chicago?" It was maybe 4 a.m. but the idea of the boys falling back asleep was quickly fading.

The ride continued through Idaho, the landscape greener than most summers due to a rainy spring and wet summer. And then we crawled into Utah, followed by Wyoming, every few minutes a chirpy voice asking, "Are we there yet?" or "Can I hop?"

We made it to Rawlings, Wyoming around 3 p.m. and exploded out of the car like a trick can of cloth snakes. My husband took Sean to the pool and my oldest and I brought some luggage up to the room and melted into the hotel funiture.

The next day we ate a quick breakfast and headed back onto Highway 80, heading east, with half of Wyoming and all of Nebraska and Iowa and most of Illinois in front of us. Day two seems to always be the hardest. When I was younger I did a bike fundraiser with a gal pal. We had biked sixty miles the first day. We felt proud and strong, but after we ate dinner we were sore and started trolling the little town we had stopped in for industrial size Ben Gay. We almost cried on Day Two when we mounted our tired and sore bodies on our bikes and headed out for another sixty miles. I can't even remember Day Three but I know we smelled very minty and our bodies were fairly numb from the pain and the loads of Ben Gay.

This is exactly how Day Two on our Road Trip from Hell felt. Our bodies were like parenthesis, slouching in the car (we took the small hybrid to save on gas -- left the roomy, gas guzzling loser cruiser van @ home in the garage), never free of the sun's steamy glare.

We drove forward, the land like wet slick quilts, softly billowing into gentle ripples, jeweled with fences, crops, ponds and livestock. We had come from the mountains, from the muscle of the intermountain west, sliding down into the placid and predictable heartland, where we could see for miles with no surpises.

By evening thunderstorms had moved down from the north and the radio warned of tornadoes and flash floods. My husband white-knuckled the drive, navigating through sheets of rain, over swelling rivers, thankful for the lightening that would light up the inky darkness, and the boys shuddered from the shaking thunder.

By 1 a.m. we made it to my parent's home. Sean hopped into the house, hopped onto my parents and laughed, so excited to see them. After hugs and talk we fell into beds, so happy to arrive safely. To think of the journey back home sent chills up and down my spine so I tried to remain in the present, to enjoy the sight of my mom and dad, to relish in their laughter and smiles and to let go of the stressful ride and the "what can go wrong on the ride home" thoughts. I just wanted to be in this moment, to frame it with hope and happiness, to keep that feeling frozen into a tight cube, to save for another day when I needed to find joy.

Making the Cut

It was time. When I looked at him it was getting tougher to see the big round eyes under the haystack of red hair. I had been putting it off. A quick toss in the shower or matting it down with "No More Tears" could barely hide the nest that was growing on top of his head.

After his last haircut, we left without being completely finished. Amanda, the gal who cuts our hair, had battled Sean fairly effectively while he slouched and pulled and yelled as she tirelessly worked the clippers and sprayed water on his head. But the battle was too heated and when the comb snagged hard on a large knot it was time to call it quits. Besides, his sides were shaved clean and neat and some of the top thinned out so I waved the white flag and unleashed Sean from the plastic cape, an unappetizing sucker covered in red fur clutched in his sticky hands. We'd have to learn to live with the swath of red hair that spilled like a waterfall down his forehead.

When my husband got home that evening he remarked that Sean looked like he was the lead singer from the Flock of Seagulls. I thought it was less retro and more faux-hawk. After three weeks, when it became almost a backwards mullet, I went for the first pair of scissors I could fish out of my drawer -- a pair of rusty old poultry scissors and followed him around as he hopped and swatted away my hand. I gave it my best shot with the dull, worn poultry scissors -- a clean snip across the front. I tried to thin out some of the top but the blades were dull and I didn't make much progress. When it was done, the backwards mullet was somewhat more tamed replaced by a jagged curtain of red bangs across his forehead. I thought it didn't look too bad but my husband, who wouldn't notice if I painted all the walls of our house magenta and replaced the dining room table with lawn furniture, noticed my handy-work and said, "I didn't think it could get worse."

After another three weeks, when his hair poofed like an atomic mushroom cloud on top of his head, I knew I couldn't put it off any longer. I had failed to make an appointment with Amanda, who I thought could use a break after the last appointment. Besides, she cuts my husband and older son's hair and does a heck of an eyebrow wax on me -- we couldn't chance ruining that relationship. She was too valuable to the rest of us.

So on Saturday, while my husband was up in Canada playing rugby and my older son was down the street at a lacrosse tournament, I gathered up what little courage I had to take Sean to a random barber shop that I had no intentions of EVER returning to.

When we walked in, the bells on the door was the first noise to irritate Sean, followed by hairdryers, clippers, a loud television and barbershop talk. Luckily, there were two chairs open and the only woman cutting hair there, pretty and small, motioned us over. I whispered to her that Sean had autism and could be squirmy. After that I sat across from him and held my breath.

She went to work, slowly at first and then, seeing panic in my eyes and hearing Sean's growls and at one point, he pinched her wrist, said "I should make this quick, huh?"

I nodded and said "Thank you," over the drone of clippers.

The barber next to Sean did a running commentary on Sean's behavior.

"Guess he doesn't like haircuts?"

"Stay still, son, or you'll get clipped and it will hurt."

"We can do this the easy way or the hard way."

"You're just making it longer."

I glared over at him. Behind him displayed proudly on shelves were Star Wars and Lord of the Rings figurines entombed in boxes. He wore a wrinkled t-shirt half tucked in and pants that could sure use a belt. I did my own running commentary of him in my head beginning with,

"Nice toys, Man-Boy."

The barber on the other side was kind. He was cutting an older man's hair and kept looking over at Sean. Several times Sean tried to make a break for the door and I leaped out of my seat and wrestled him back in the chair. The nice barber said, "Maggie is great with kids. She'll do a good job."

I waited anxiously and could feel the heavy stares of other customers on Sean and me. I didn't care so much as I saw gobs of hair fall from the clippers and gather into little mountains on the floor. I would never be back here. Another bridge burning in flames behind me. It's all part of being a mom.

She did the best she could and even tried to make his sides completely even. I told her it was fine, that his hair looked great and paid her.

"Let me get you change," she said.

Which I replied, "No, keep it. I can't pay you enough for this haircut."

We hustled out the door and into the minivan. I let Sean know that his behavior was lousy and unacceptable to which point he said, "Could we go to Target?"

"Really?" I thought to myself, "Are you KIDDING me???" I didn't even respond and when we turned away from the barbershop and passed the larger than life Target bulls eye sign he said with utter disbelief, "But why we not going to Target?"

Clearly, he missed the main points of my little talk. I explained it again, "You need to sit and be good for your haircuts. You yelled and even pinched the lady. That is not okay."

His eyes went wide in the rear view mirror, the tears slowly filling in and he said with shock, "I didn't earn it?"

I didn't know if I should laugh or cry but I opted to shake my head no and turn the radio up to drown out the impending tantrum.

When we arrived home I had a message on the home phone. It was from the irritating barber who was doing the play-by-play of Sean's haircut. He wanted to let me know that I left my cell phone there.

I hung up the phone, had a silent scream in my head, got Sean back in the car and began the ride of shame back to the barber shop.

I parked the car and told Sean to wait a moment while I ran into the barber shop.

"Remember me?" I said walking in and laughing but really on the verge of a nervous breakdown.

The woman who cut Sean's hair grabbed the phone from the other barber's station (maybe he was blowing his tip money on the new Shrek toys at Target)and handed it to me. I was relieved that he wasn't there and that I would be spared a lecture on raising children or the dangers of leaving my cell phone behind in random stores.

"Thank you again. You were very patient and I really appreciate it," I said securing the phone in my back pocket.

"You can bring him in anytime," she said with a generous smile affirming my belief that there are some really good people in the world.

As I left, I bit it on a parking curb -- ass over tea kettle and fell in front of a parked car with a couple of teenagers. I scrambled back to my feet and headed to the mini-van that was shaking up and down. Sean had decided to hop in the car, his laughter spilling out of the back vented window.

My palms were scratched and bleeding and my pride was a tangled heap at my feet but I manged to say a simple prayer of gratitude -- "thank you" into my aching clasped hands. I had finished what I had set out to accomplish, as little as it might seem to a stranger. Sure it didn't come without a lot of aggravation, not to mention my wipe-out in the end (at least I didn't knock out any teeth) but it was complete. Done. Finished. Yey!!

Searching

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.

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!

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.

Sunday
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.

Thursday
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.

Friday
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.

Saturday
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.

Sunday
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.

Keeping on Track

Sean runs track through Special Olympics. He just started a couple of weeks ago but my husband couldn’t imagine a better fit for a boy bubbling over with energy. The team meets on Sundays at a high school track near our home. We didn’t know what to expect. Sean did soccer through S.O. and we were extremely happy with the outcome.

The first practice was unusually sunny, the grass was bright green cut short in the middle of the track. We decided that Sean would run the 400 and do the long jump. My husband stayed close to keep Sean focused.

They broke up into groups and Sean was paired with Jeff, a man probably in his twenties who had Downs. The buzz about Jeff is that he was clearly the fastest. He had a strong pace and good form and he was proud of his reputation. Sean and Jeff ran a practice run of the 100 and the 200, Sean’s pace strong, keeping in his lane a bit of struggle but full steam ahead. Jeff finished first followed by Sean. He waited for Sean and gave him a high five. I was near the fence waving madly at Sean, clapping and telling him that he did great. Sean gave me a quick smile and looked back at Jeff as Jeff placed his hand on Sean’s shoulder and said kindly,

“Let’s get back over to where the rest of the runners are.” They walked off together.

I wanted to hug Jeff and thank him for taking such tender care of my boy. Would this happen in a typical situation? Would a typical peer put his hand on my son, a gesture of friendship and kindness, or would a typical person not really know what to make of Sean? It didn’t seem to matter to Jeff. Sean was a little kid with fast legs and big eyes and he was looking out for him.

Later my husband and I waited by some benches near the track. A young woman, maybe twenty years old or so came up to us with her hand out and introduced herself,

“Hi, I’m DJ,” her hand searching for mine.

She wore an “Oregon School for the Blind” t-shirt and she had a tick disorder, maybe Tourettes syndrome and possibly had high functioning autism. We talked for a bit. She was going to do the shot put and the 200 -- these were the events that she felt where she excelled. At the end of our conversation she said simply,

“I enjoy enjoying life.”

My husband smiled at her and said, “We should all have that attitude, DJ.”

I couldn’t respond. I was falling through her words, lingering in the peacefulness that she brought to us. She was legally blind, had a constant tick and social impairment issues and yet she took nothing for granted -- the sunshine warming her bare arms, the rush of wind against her skin when she ran and the weight of the shot put in her arms. Life was not going to be wasted on her. She was not going to sit in darkness and loneliness. Absolutely not. She was grateful for the life she had been given as imperfect as it might have seem to others.

Sometimes I think our definition of success is too narrow. We translate success to the houses we build and lavishly decorate, the imported sleek cars we drive, the expensive vacations we take, the country clubs we join and the jewels that hang on our wrists and fingers. In our culture this symbolizes success -- we have arrived. We have made it.

And yet that Sunday, on a high school track field, I saw achievements that are intangible and often forgotten but are so much more important and valuable. I saw a young man take Sean under his wing, his generous feathers protecting and guiding my child. A man who some may feel sorry for or think how lucky they are to not be him never knowing how beautiful and kind he was.

I saw a girl, who many would guess carried the world heavy on her shoulders, but instead walked with the lightness of an angel, spreading her smile like wings and offering up hope and happiness. She said it perfectly, she “enjoyed enjoying life.”

How often do we ask ourselves this --- are we enjoying our lives? Do we work too hard for stuff that we think will make us happy; forgetting to slow down and to spend time searching each other’s hearts where happiness is truly housed.

I learned more from these two people on a Sunday in April then I have learned in a long while. Driving past this track meet, some may laugh at, make fun of, feel pity for or be frightened of my child and the other disabled athletes. But the members of that track team will have the last laugh -- they get it. They know that life is what you make of it regardless of limitations. That life is a present, wrapped and hidden deep in our souls. A present to be opened and cheerished.