Tuesday, December 29, 2009

A Winter's Dream

The Christmas season came and went -- a blur really. I had hoped to slow it all down -- to relish in the simple, spontaneous moments but got caught up in the whirlwind. December started out quickly with a trip my husband had planned to Shanghai, A short trip, really -- only seven days -- there and back in no time. No time to brush up on his Mandarin or much sight seeing -- just business. He has been to China many times. He first went to China during a college overseas program. After China he moved to Taiwan to teach English for a year. Since I have known him (more than eighteen years) he has been back and forth many times. At one point, before autism entered our lives, he had hoped to live there with the boys and me for a summer at least, maybe longer. But like many plans that at one point seemed so reasonable and logistical, it soon became unlikely. But who knows for sure.

We headed out to Chicago for the holidays to catch up with family. Ten days that came and went like wind -- fast and furious and never enough time to see all those who we want to see. It snowed, my parents’ front lawn looking like sheet cake -- smooth and white glinted with sparkles. The boys joined their cousins for sledding and snowball fights, Sean running and laughing his cheeks burning red with chill, his boots wet with melting snow. The days peeled by like Christmas wrapping paper torn from boxes and toys -- the anticipation building and peaking to an ear-splitting crescendo, leaving my mind ringing with echoes days after.

And today, back in Portland, I watch the snow lingering in the dusk -- like feathers from a torn pillow, floating carelessly. The flakes tangling in the empty branches of the elms and maples, like diamond bangles on bony wrists, like silver spider webs in the giant firs, like melting starlight spilling on the ground, the swingset, the lattice in the garden. For an evening, my backyard looks like a postcard -- a winter wonderland and I catch my breath every time I look out the big picture window.

It slows me down, reminds me to take a moment to drink it all in, the reflection of the Christmas lights twinkling off the glass, the sounds of the sleds being pulled into the garage, my childrens’ excited breathless laughter and the wet puddles at the door. This is the gift I have wanted most -- this present with its dreamy bow on top, hugged in ribbons -- a snowy memory swimming in tissue paper.

Tomorrow it will probably all be gone -- the marine layer working it’s way in, the colder winds shrugging off to the east and the snow warming to rain, washing it all away like a shaken Etch-a-Sketch. And tonight will seem only a dream, the branches losing their coats of silver and crystal melting to a swirl, the miracle of it all so fleeting.

Wednesday, December 2, 2009


It was going to be a long afternoon. Sean wanted to play basketball outside which is fine -- the weather, albeit cold, was unusually sunny. He ran to put his high tops on and grab a ball and he headed out to our neighbor’s basketball hoop. The first try, arms between his leg, the old granny-style toss, proved to be unsuccessful, the ball floating through air, touching no net, not even rim or backboard and sailing straight down in front of him. He started muttering. Second attempt was worse. It actually went over the backboard and landed in the neighbor’s June berry bush. His hands began slapping against his legs and his voice got angrier,

“Don’t watch me, Mommy. Go inside!”

“Sean, you are not going to make every basket. You have to be a big boy. No yelling.”

“ No!” he yelled, his voice edged in hysteria, “No! You go inside!”

Sean’s big brother appeared at the door, “Why is he mad?” he asked.

I walked toward him and explained that he was frustrated that he wasn’t making any baskets.

“I’ll help him,” he said and went down to the street. Sean was still angry as his brother tried to steady him, telling him to calm down and aim for the net.

I watched from the porch as each shot missed the intended net and Sean became more out of control.

“That’s enough,” I said walking to Sean and grabbing his arms and shoulders. He twisted and screamed, his body stiff as I tried to carry him into the house.

“It’s okay, Mom,” his brother said. “He’ll be fine when he makes the basket. I know. He does this.”

I dragged Sean into the house, his voice screeching, saying over and over,

“I want a new Mommy!”

All I could think was, “Good luck with that. You're stuck with the one you've got.”

Charlie came back in the house, bent down to Sean and said, “Come on, Sean. You can do this.”

I reminded Sean that he needed to be a big boy and no screaming.

“But I am frustrated,” he said, his face tear stained, even his ears were flushed red.

“I know, Sean, but you need to find a better way to deal with that. Screaming and carrying on like that isn’t going to make it any easier.”

“You stay inside, Mommy. And don‘t watch me.” his voice starting to calm, his order declared.

His brother went out with him and after the third try Sean made it. I watched secretly through the blinds and although my view of the basket was obstructed by the giant red cedar, I could see Sean’s body relax, his fists unfurl and heard no yelling -- every indication that he reached his goal.

The two brothers came back into the house, with the older brother saying,

“Good job, Sean. That was awesome. I can hardly make that shot either.” The last sentence he spoke was untrue -- he could make that shot blindfolded.

Sean was still breathless and anxious. He had built up so much anxiety over making the basket that it took him the rest of the afternoon to calm down and to lose some of his edginess.

By evening he was better, although he was tired and cranky.

“Listen to my music with me, Mommy,” he asked, toothpaste on his chin and his pajamas inside-out. I sat down on his bed while the music floated out of the CD player -- the flute and violin softening the night.

His older brother came in a few minutes later and said, “I will stay with him, Mom.”

“No, that's okay. Thank you, though." I whispered.

Then Sean piped up, “You stay with me, C?”

“Sure, Sean,” He said.
I tucked them in and said good nights and went to my room which is directly across from Sean’s room. I listened to them talk. They do not talk like brothers who are only 19 months apart. Sean talks about things that matter to him and only him,

“Who do you want to be in Monsters vs. Aliens? “

His brother plays along, “Can I be the Missing Link?”

Sean thinks it over and says, “Okay. You are the Missing Link. Is Shrek Pixar or Dreamworks?”

And then, like he always does when he goes through his litany of questions answers his own question, “Dreamworks. Yes, it is. Dreamworks.”

I am about to leave my room when I hear his older brother say kindly,

"You are a really good basketball player, Sean. Maybe someday we can play basketball together. What do you think?”

Sean doesn’t answer. There is just silence for a moment and then Sean says,

“Yellow is my favorite color.”

More silence. “I like blue. Good night, Sean,” his brother says softly.

I really wanted to hear, and for the briefest moment thought I might, Sean answer,

“Yes, I do want to play basketball. That would be fun.”

But my boys don’t have conversations like that. My older child is incredibly patient, but I couldn’t help think that sometimes he must long for the brother who can shoot hoops and talk football and tell jokes with and share stories.

My mother would say, “You never miss what you never had.”

Maybe that’s true. This is the only brother he knows -- a little brother that he has always protected and loved. They are not rivals. They hardly fight. They don’t have a lot in common. But at the end of the day, they are brothers -- and I don’t think either would be the boy he is without the other. They make each other better.

Monday, November 23, 2009

A Letter To My Oldest

Dear C,

Where do I begin this letter to you, my oldest boy. Sometimes the things that are the most precious to us, the most loved also happen to be the most difficult to write about authentically. But I will try anyways.

First, thanks for being such a good son and a great brother to Sean. When your little brother was born, a snowy, blustery January day, the streets running thick with snow and ice, you came to the hospital with Papa to see me and meet your new brother. I was holding Sean in a worn, cotton receiving blanket, a swirl of red hair peeking out. You were not even two years old and you smiled, your sleepy eyes thick with lashes. But then you saw this tiny baby, and a hint of betrayal stung in your eyes as if to say,

"But how could you replace me?” (as if that were ever possible)

Your little body stiffened and you pulled away. I missed you so much when you left and felt terrible watching you go, your small hand wrapped in Papa’s big hand, the back of your head soft with tousled hair.

It took you some time to get used to this little intruder who seemed only interested in eating, pooping and sleeping. Once at Target you hit him with a Barney VHS tape, your face burning with anger and frustration. I scolded you and told you how disappointed I was. But soon after you became more than just Sean’s brother -- you were his guardian, his protector.

Sometimes, you would climb into his crib and sleep with him, a gentle arm around him, your chin nestled in his hair. It was as if there was an unspoken promise between the two of you -- a pact made,

“I will take care of you if you have to carry this -- I will share the load and cushion your falls. We will get through this, little brother. I promise.”

You were always soft with him. I never saw you hit him or scream at him. There was constant tenderness in your interactions with him as if you knew way before your dad and me.

It wasn’t easy. It was never easy. The first time I took Sean to a summer program for disabled children you helped me, holding my shaking hand, fighting back tears as I handed him off to the teacher. We had to move past another child having a terrible tantrum in the hallway -- her body thrashing and frantic hands grabbing at us. When we got to the minivan I cried and you said, “Don’t be sad, Mommy. He’s going to be great.” You were only five years old.

When you grew older you were the one who Sean would go to when he needed peace and safety. You knew how to redirect him and entertain him and make him feel whole.

Once you asked me if you would have a child with autism some day. I felt my mouth go dry and the tears clutter in my eyelids and said,

“Maybe. There’s a strong genetic link to autism so there might be a chance. Does that make you sad?”

You looked at me incredulously as if you didn’t understand why I would ask that.

“Sad? No. I think I’d be an awesome dad to an autistic child.” Sean’s diagnosis to you was more of trait like freckles or blue eyes and not something to be afraid of or dread.

When you overhead Dad and me talking about our future and our worries for Sean you said quietly to me at bedtime, “Don’t worry. I’ll always take care of Sean.”

For such a young boy you have always had such old soul responses. Your ambition is admirable and your concern for your brother is unparallel. I want you to know that we don’t expect you to take care of your brother when we go. You will grow and be a man someday with your own life and family and with that comes your own worries. Besides, Sean may surprise us all in the end. He may be our soft place to land.

I’m writing you this letter so you will always know that Sean wouldn’t be the boy he is without the love and kindness that you have always, unselfishly given him. You make such a difference in your brother’s life. We couldn’t ask for a better son and Sean couldn‘t possibly have a better big brother. All I want is for you to always keep that place for Sean in your tender heart. There is an undeniable connection between the two of you -- something larger than this lifetime.

Love, Mom

Sunday, November 8, 2009

When Did You Know?

Often times, people will ask me, "When did you know that Sean had autism?" I have been thinking about that a lot lately. When did it truly sink in, down to the bone; when it could not be ignored any longer. I thought it best to look through writings and journals that I had kept, in order to answer the question as honestly as I can.

From all accounts, he was perfect. His skin was the color of gleaming ivory contrasting against his bursting red hair. His blue eyes were surrounded by long, thick reddish-blond eyelashes, like petals on a flower. People stopped me all the time when I took him to the grocery store or the post office, “Look at his hair. He’s gorgeous.“ Yes he was. My little angel. He was simply a beautiful baby, my pride and joy.

So I guess if you ask me honestly, when I realized something was amiss, I would have to say I don’t know exactly. There was not one clear moment. It happened over time, like lint collecting in a dryer, little moments accumulating over time to produce something bigger, something too hard to ignore.

I kept a journal for Sean. I had imagined that it would be filled with all these wonderful stories of him as a baby, then as a boy and finally a young man. It would be a gift I would give him when he left for college or the night before his wedding or the birth of his first child. I imagined the surprise in his eyes, the smile spreading across his face as I handed it to him.

These are things I took for granted. I made assumptions never realizing that life didn’t always unfold the way I had imagined. I wrote in it until it was just to difficult to write any more.

There are sweet moments like November 8, 2001 when Sean was nine months old-- “Sean you are officially walking."

In August 2002 it says, “we are having such a great summer, spending lots of time @ the swimming pool…I took you for your first haircut yesterday. You were such a good sport!”

On March 27, 2003, two months past his second birthday I wrote, “You are currently in the 20% for weight and height. You are a feisty little rascal.” I glued a picture of him underneath the entry. He is wearing a sea foam green sleeper, his cheeks apple red, and he is smiling, his eyes holding onto laughter.

By the next month in April of 2003 he started to talk. He said, “bye-bye”, “yellow”, “Mommy” “Da-dee” “dog” and “Papa”. But in the same entry I wrote “You were kicked out of Mom’s Day Out for climbing, pushing and hitting other kids. Oh, I so hope this is a stage! When you are angry you bang your head on the floor.”

There it was. I was beginning to lose him. Even in my writing I can sense my own worry and I hear the panic in my voice. It was the first entry where I had begun fearing what was to come. I was beginning to brace myself for what lie ahead.

Still, I wanted to believe what everyone told me.

“He’s a boy. They talk later.” or “He’s your second. His older brother talks for him” and, “You’re spoiling him -- he needs more discipline. A good hard swat.”

But all I can remember is thinking, “Tell Mommy what is wrong and I can fix it“. How could I fix something that I didn’t even understand?

The last entry before the final entry was in July of 2005 when Sean would have been 4 years old. Simply put I wrote, “You are lots of work. You have a very quick temper and you get very upset at least twice a day.”

That time period is blurry. I stopped writing in his journal. It became too hard. There are no entries for two years. The final entry was intended to be the last -- a couple of paragraphs trying to wrap it all up, the squashed bow on top of the crushed box.

On August 22, 2008 I start with, “Wow, 2 years slipped by and I’ve been afraid to write in your journal -- I am sorry for that. My heart is heavy with worry and sadness. My precious little guy -- what I had imagined for you years before did not really pan out. Since moving to Portland, Oregon (not too long after) we were told by a doctor that you have Autism (it was a fear hidden far in the caves of my mind). We’ve watched you struggle and fight. We haven't always done right by you. We didn't understand…Oh Sean, I wish I could make you all better, make the world an easier place for you to live in.”

The page in my journal is riddled with spots, dried salty teardrops that fell from my chin and free-fell onto the paper. It is a painful reminder of how much sadness a person can hold.

Although I can't say is has been smooth sailing ever since, I can say, honestly, it has gotten better. As a family of four people there are rules we follow -- stay in the present and try our best to be kind and understanding to each other, even during the toughest moments.

So today, Sean ran past me quickly, his soccer cleats leaving pine needles and grass on the floor, his body tumbling forward in delight and his smile, like a life saver, keeping me afloat. It doesn't really matter when I knew for certain ; it only matters that we take each day like a gift and make the most of it. Life is really precious and so is Sean.

Sunday, October 25, 2009

You Are Not Alone

About a year ago I attended a support group for parents of children with autism. It was in a therapy gym and we sat among mats and swings and exercise balls -- we looked like overgrown children spread across the floor trying to make ourselves as comfortable as possible. It was casual. The person running it was an Occupational Therapist who worked mostly with kids on the spectrum. The topic was somewhat general -- basically how to deal with the diagnosis.

At this point, Sean had been given his diagnosis for about three and a half years. I had come a long way, thanks to the help from some really great parents I had met who had been on similar journeys and a doctor who made us see the light and helped us come to terms with what having a child with autism really meant. Her philosophy was to treat the entire family -- we were all affected by this disorder and Sean couldn’t thrive unless we all understood why Sean did the things he did.

She reiterated what my father had said, “No child wants to feel like this. No child wants to behave like this.”

And from that point forward, we stopped taking it all so personally and started regulating ourselves in order to create peace and balance in our home.

Each parent took a turn standing up and telling his or her story, sharing what they felt comfortable sharing. We were all at different places and we all had children spread across the spectrum. No story was the same and yet similar words came out of each story: grief, sadness, fear, overwhelmed, struggle and loneliness.

There was a young mother, with light reddish hair and pale skin, her eyes rimmed with redness, tissues bunched in her hands and I couldn’t help but to watch her taking it all in. I could see that she was in a lot of pain and guessed that she was new to the diagnosis. I saw in her what I had seen in myself -- a confused and sad person who’s world was blown apart and who was overwhelmed of where to begin to pick up the pieces.

When it was her turn to talk she took a deep breath, her shoulders shook and the tears began to slide down her face. She had a three year old boy who wasn’t talking, wasn’t making eye contact, having terrible tantrums and obsessed with lining up his toy cars. She had received the diagnosis from a developmental pediatrician a month ago and although she knew something wasn’t right with her child she wasn’t prepared for the diagnosis of Autism. She was afraid. She was sad. And mostly she was lonely.

I wanted to move across the room and sit with her and tell her that she was going to make it through this. I wanted to tell her that she was going to amaze herself at what she was capable of doing and that she would surprise herself at how much she would come to completely love and adore this little boy who built so many walls around himself. I wanted to tell her that it was horrible and difficult and completely exhausting but that, in time, she would make a life for herself and for her family that would make more sense.

It’s like when you have a cut on your hand and it is tender and sore, but over time it heals and maybe leaves a small scar to remind you of how much it once hurt and how far you have come. It doesn’t go away but it doesn’t hurt like it initially did and it might not look pretty but it’s part of your history, and it tells a story of how you got where you are now standing.

I wanted to hug her and tell her that she was not alone, to look around the room and see all those who had been where she was and to see how far they had come and that they were still standing and sharing and, yes, they were sometimes laughing.

When the meeting was over, I walked over to where she was standing, a table with punch and pretzels and Chips Ahoy cookies and I smiled warmly and said, “Hi.”

She looked up, a paper cup in her hand, her eyes swollen and smiled back. I waited a beat to see if she wanted to talk -- I remembered how I felt at that point, exhausted and not ready to share everything and embarrassed to cry in front of strangers. I wasn’t sure where she was in the whole grieving process and I didn’t want to overwhelm her nor did I want to say, “It’s going to get better.”

The truth is, I didn‘t know if it would get better. It sometimes gets harder. But what I did know is that she would get better. In a few weeks, months, maybe even years she would cry less at night after tucking her child into bed, she would mourn less at the playgrounds and the school yards where the children ran freely and happily, and she would get stronger.

She had an older child, like me, who needed her and she would be there for him. She had an autistic child, who would teach her to love more freely and to find kindness and forgiveness and especially patience in the toughest moments. She would make it.

When I drove home that night, I couldn’t get her sad eyes out of my mind. I wanted to make it better and reassure her but this was her journey and nobody could do that for her but her.

I often think of those who smiled at me, touched my arm, gave me a knowing look (been there and done that) and sometimes that was enough for me to put myself back together, to give me hope that I wasn’t alone and that I could survive this. I sometimes wonder where I would be if it were not for the kindness of those who took the briefest moments out of their busy lives to notice me, struggling and disheartened, and to quietly give me some small gesture to know that I would be okay.

Sunday, October 18, 2009

Wishing and Hoping

I had spent most of this week, organizing fall/winter clothes, cleaning closets and thinning out toys and books -- a nesting feeling that always hits me in mid-October -- when sunlight is fierce and quick and my tired knees ache with the promise of rain. While cleaning out a bookshelf, I came across a journal that I had kept for awhile. I had always loved the feeling of pen against paper, the measured, slow translation of mind to notebook but easily replaced by quick typing skills and the easiness and portability of a laptop. I had filled several pages with my thoughts exactly a year ago, and one page was titled, “My Wish For Sean”.

I was curious what I had wished for, a year ago, in a seasonal setting so similar to today -- the trees changing in a fury of colors, leaves freefalling from brittle branches and wallpapering the lawn. What had I wished for? This is what I wrote:

My Wish For Sean

To smile
Freely and often
Pink lips framing chicklet teeth.

To bite into the goodness
Without hesitation
And not hide in the backseat of the mini-van.

To be happy
Free of encumbrance
And at peace
With a brain
That runs and hops
Ahead of thoughts and words.

To find love
In safe arms of another
A flower with tender petals
Blossoming open
An umbrella of color
Keeping him safe
And warm.
Holding him tight.

I’ve never been greedy with my wishes
I only want for him
a window left open
A suture
A sling
To help make it possible
To share in the simplest moments
To be more than just this

A year has passed. Another candle added to a frosted cake, a little boy’s new wish (for me, the same wish -- help me help him be all that he can), fall, tumbling into winter, melting to spring and bursting into summer and now back to fall. So much has changed and yet, here I am, holding onto wishes that haven’t changed or been modified.

The other day Sean asked me,
“Mommy, will I be married someday?” his eyes bright, his mouth speckled with grape juice.

I smiled and nodded and said, “Yeah, maybe, Sean.”

I had an overwhelming need to nod my head, to keep the pain and sadness at bay, to not betray him or to let him know that those thoughts never enter my mind concerning him.

If it were my oldest son I would have laughed and said, “Yes if you decide to one day. But not until your at least thirty. You have your whole life in front of you.”

I have always assumed that whatever he might want to pursue he will be able to do so. But I guess I don’t share this assumption when it comes to Sean. Will he find love and marry? Honestly? I can’t even imagine it. And yet, he has this thought, like anybody else. Isn’t he entitled to think it and if so, why does it hurt so much? Am I fast-tracking the rejection that he will encounter in life, the isolation that often comes with autism. And what if he has the desire to belong and to be loved but is too impaired by his disability? Then what?

I try to remind myself that if he can love his dad, his brother and me, then surely he will learn to love others and he will be loved back. Right? But sometimes my heart breaks to think of him heartbroken and alone. Autism has robbed him of so much already.

I think I still need to hold fast to this wish of my boy being happy and loved. We all face heartbreak and sadness and by suffering we learn to appreciate the good in life. I cannot protect him any better than I can protect my oldest son. All I really can do is just love my boys and hold onto hope. And for now I think that's enough.

Sunday, October 11, 2009

He Shoots, He Scores!

My oldest son and I drove across the bridge connecting Washington to Oregon, the Columbia twinkling like diamonds as the last of the sun fell into the horizon. The river was flanked with trees that are changing -- the birch tree leaves have turned golden and the maples are flushed with feverish red. The early night matched my good spirits -- a shift in the air. You see, tonight I saw my oldest son score a goal in hockey. He has done this many times, but this was a first for me.

I wrote about this in a book I have been writing. A chapter, that happily, will need to be revised. Here it is:

It was hard on his brother. There was a time that Sean would hit him for no apparent reason or yell at him. We were grateful that our oldest boy was such a patient and kind little boy. He felt bad for his brother and sad that his brother didn’t always seem well. He loved Sean. When Sean would cry at night his brother would grab his pillow and sleep next to him. So many mornings I found them rolled up like crepes, together, their sweet faces touching. When Sean would yell and cry it was his brother who after looking at my tired face would go to his brother, rub his shoulders and say calmly, “It’s okay, Sean. Don’t be sad. Do you want to watch cartoons?” When I would lose my temper with Sean, his brother would look at me his eyes pleading, “Don’t Mommy. He’s just going to get more upset.” At times he understood Sean more than I did.

As our son got older, it was harder for him to get along with Sean. Sean would bother his friends when they came to the house, poking and pinching them. It was embarrassing. When I would go to my older son’s soccer games I spent the whole time keeping Sean from running onto the field. At hockey games I stayed with Sean in the parking lot or the car, the loudness of the rink too much for him.

“Did you see my goal, Mom?” he asked. His face flushed and his body overtaken by an enormous green and black hockey duffel bag.

“Sorry, bud, I didn’t see it.” I said sheepishly, grabbing his stick.

“Why not?” his smile slowly fading.

“Sean didn’t last in the rink. I had to take him outside. He was getting too loud and he kept covering his ears. Let‘s go. He‘s out in the car.”

“Oh,” he whispered, “Well anyways, it was awesome -- a one-timer shot.”

To this day I have never seen my son score a goal in hockey. He’s a heck of a player -- I know that because that’s what the coaches tell me. “Plays with so much heart.” I would do anything to see his next goal, to see him windmill his stick, skate on one foot, high-five the other players.

He took it all in stride. No complaining or whining. He understood - a boy wiser than his years. His brother spilled his paints, left the caps off of markers, tore up his baseball cards, hid the Wii controller and peed in his bed -- they were all forgivable offenses. No grudges were held. Maybe he’d be frustrated, sigh loudly but he would always end with a soft, “It’s okay, Sean.“ All was forgiven in his brother’s eyes.

And that made me feel worse. I wanted him to tell me that it wasn’t fair. That he was sick of Sean ruining everything. I wanted him to shout, “Enough already!” But he never did. He remained loyal to his little brother. He protected him and made every attempt to love him in spite of the time and attention that Sean took away from him. He would never look at it like that. In his mind, Sean had been dealt a heavy blow and it was up to the rest of us to make adjustments.

So tonight, my son and I smiled all the way home. I am so proud of the boy he is. I am so happy to be his mom. I am beyond thrilled to see him score a goal, his arms pumping over his head, his stick waving in the air.

Sunday, October 4, 2009

Grandma and Papa's Boy

It is early Sunday morning and I am alone with only the sound of last night’s rain dripping from the trees and roof top. It’s cold, too, cold enough where I actually turned the heat on to 65 degrees! October 4th and the heat is on? Not how I was raised. My dad and one of my cousins would see who could hold out the longest as far as turning on the heat. We lived outside of Chicago and my cousin lived in an old restored farmhouse in northern Illinois, in the middle of the plains with only corn stalks to buffer the winds. Sometimes we made it to mid-November even December one year. My mother would command us to “put on another sweater.” Or we would crowd by the fireplace in the family room, going from flaming hot skin back to seeing our breath. In the end, my cousin or my father would break, and the heat would flow through the vents, however, our bodies seemed to be in a perpetual state of numbness. I swore that I would never be cold like that again. Then I married a man, who like my father and cousin, is no fan of turning on the heat.

So why today did I muster up the bravery to rise above hard-wiring reinforced by a husband who thinks similarly? Because he is in Chicago. And because he took Sean with him. So, I am alone with a giddy sense of freedom and even recklessness. Who knows what I will do next? Maybe watch Bravo and eat nothing but bowls of cereal the entire day.

My older son is home. He had football and hockey practices and school. I am determined to make this time with him fun and stress free. Most of his life he has had to be amazingly flexible. Plans that we make as a family sometimes never come to fruition. This is the reality in a household where there is a child with autism. How many movies have we had to leave at previews because something spooked Sean? How many restaurants have we hurried for the bill, asked our food to be wrapped and headed to the car with a screaming boy in tow? The truth is, this is my weekend to be with my oldest son, without contingency planning or nervously carrying the ripcord in damp palms.

I tried to talk with Sean on the phone last night when they arrived at my parents home. He was too excited and wouldn't come to the phone. He was with the two people, outside of his father, brother and me, that love him with such fierceness, free of conditions or judgments. If he wants to hop from one end of the library to other, than by God let him. This is how my father thinks. He is a man who said to me once,

“I don’t love Sean in spite of his autism, I love him more because of it.”

My father has a great big heart. He is a fan of the underdog, a champion of the one that others have walked away from and written off. He operates under the belief that “no child would choose to behave that way.” So when Sean shouts for no reason, or pinches a stranger or hops up and down at a store, my father doesn’t condemn him or yell at him. He redirects him by taking his hand and leading him to an area where Sean can be alone and move and feel comfortable. He recognizes that Sean is not trying to be mean or cruel or ill-behaved but that Sean is overwhelmed and scared. I find great comfort in this. He has always recognized that it is not a parenting issue and he is never once blamed my husband and me for the way Sean behaves. He only supports us with kindness and love and always offers to help us in anyway how.

My mother has Sean’s “back". She, herself, a strict disciplinarian came around quickly to the fact that this little boy was just more than determined or stubborn but something else was at hand. When Sean runs through their house, my mother’s china and crystal shaking, she says,

“It’s replaceable, Sean’s not.”

There is nothing Sean can break or bump into or knock over that my mother will ban him from the house. The keepsakes that she has brought from Ireland or given to by family are put up high (not only for Sean, but she has had eleven other grandchildren run through her home during her lifetime) and everything else is replaceable.

“Oh relax. I can get another.” she’ll say, as I hold up a broken Belek vase that Sean has knocked off of a table, his arms swinging and his feet jumping. As a mother, who is always in frantic mode around my child in other’s home, it is the one house outside of my home that has always given me an overwhelming sense of comfort and belonging.

The funny thing is, I do miss the little guy. His big eyes always reach me before the rest of his taut body catches up -- and I miss that today -- not seeing him coming around the corner. But at the same time, I know that he is in the best hands, that he is being loved and spoiled by his grandparents and that although their time with Sean is finite, the love they give him will last his lifetime. I know that when I pick them up on Tuesday, he will have missed me and I him. And we both might feel more relaxed. I know for certain I will. We do need breaks from each other. Our mother and son relationship can be exhausting. I am his soft place to land, an extension of him, really and he is my lovely boy who makes me (as well as my husband and older son and those who know and love him) better people with each passing day. This does not come easy, but anything worth having is never easy.

Sunday, September 27, 2009

Send In The Clowns

I've always loved to watch my children sleeping. Their soft faces cradled underneath prayer hands, cheeks flushed and hair damp with warmth -- to me, there is nothing so beautiful as that. Sometimes, when Sean is asleep, I will lie down next to him and hold him close, my palms on his beating chest and I will try to transfer as much love as I have to his heart -- to make a connection that transcends everyday affections. A love that will wash over him, that might provide some comfort, even healing. I have always put a lot of faith in love -- and now I have to believe that it could possibly save my son from retreating further into autism.

As silly as it may sound, it’s not nearly as silly as all the promises floating out there to cure autism and to recover our children. There was a time I believed in a lot of it. I removed all the gluten and casein in his diet for 9 months. It didn’t save him. I removed soy products for 3 months. It didn’t save him. I gave him enzymes. It didn’t save him. I gave him high doses of vitamin B-12. It didn't save him. I fed him only organic. It didn't save him. So I gave up on the notion of rescuing my son from the tower of Autism -- from donning my suit of armor and lugging battle axes over my weary shoulders and I climbed off my horse and fell to my knees and refused to move one tired muscle.

Truth is, I am no longer a warrior mom and I am okay with that. I have retired -- a five star general no longer pouring over maps and planning invasions. I needed to gather my strength for things that matter. No more birthday cake made out of potato flour and rice milk (hear the chorus of Woo-hoo from my children), no more sneaking vitamins into juice and no more selling my kidney and corneas to shop at exclusive grocery markets for expensive, hard-to-find items. It was time to find out what I was good at doing. And you know what? I discovered that the simplest things, holding my son while he sleeps, whispering in his ears that his Mommy loves him and is so proud of the boy he’s become, seems to work.

Autism is not a one size fit all disorder. It’s a spectrum that presents itself very uniquely with each diagnosed child. So why should we believe that there is a blanketed cure? This may work for some children and help alleviate symptoms and I am happy for those who find relief. There's nothing wrong with giving it a try. But, unfortunately, these cures often don't work for most children with autism. Why put that perception out there, anyways? This idea that autism is “curable.” It’s counterproductive to most of us who are doing all that we can and finding that solutions are not so easy as a vitamin supplement or diet change.

It’s dangerous to push this message out there into the public. What’s not to stop people from thinking,

“Well why don’t you just cure your child?”

Wouldn’t we all if it were that easy? As a community, we already feel stigmatized. This message that as a mother we have the power to cure our children just isn't realistic nor healthy.

There is a lot of pressure to be the Mom who not only can iron her Super Mom Cape with one hand but also peel potatoes and help with homework with the other. And it’s okay to not be that mom. Heck it’s close to impossible to be that mom. It’s perfectly fine to be the mom who puts on the red nose and rainbow colored wig and acts silly and lives in the moment. I can no longer join the ranks of the warrior mother. Instead, I am a clown mother. I want to pack myself into a mini-cooper with a bunch of clown moms and head out for a night of fun. I don’t want to obsess over how to "fix" my child but instead learn to accept him for the boy he is. I don’t want to sit in a chair with a Kleenex box in my lap anymore. I’m opting for a night with friends, a pitcher of margaritas and karaoke. Life is hard. Why make it harder than it already is?

I used to laugh a lot. I used to be so much fun. I want it back. I want to be happy -- in the moment -- unafraid of what my future holds and content with the life I have led so far. So for now, no more extreme changes in diet or supplements. Happiness, love and laughter seem to be the best medicine at the moment.

Sunday, September 20, 2009

One Stone in the Pond

The Balinese people do not let their babies’ feet touch the ground until 105 days have passed. During this time, they believe that babies are still pure and close to heaven and that grounding the child’s feet could leave them prone to evil spirits penetrating their bodies and souls. They perform a baptism after the three months have passed by blessing the child head to feet and letting the baby’s feet touch the earth. At this point, the baby is now born and no longer attached to heaven.

I have always had a soft spot for this belief -- the idea that babies are still secured to the heavens -- not entirely our own but a sharing between the spiritual and natural worlds. When my boys were babies they would stare intently at nothing, their eyes peaking with purposeful gaze and I often wondered if their tiny eyes were fixed on the ghosts of ancestors.

The older I get the more I am curious about my own spiritual development and what there is to learn in this lifetime. Are both my feet firmly planted into this world or could I possibly unearth myself and float freely into another realm?

Sometimes, when I am alone with my own thoughts and weighted with concerns and worries, I try to imagine that this life of mine is a starting point for something else. What that is, I’m not quite certain, but I often think that everyday I have opportunities to explore, decisions to make and I have to be aware of the implications and consequences -- how my choices affect not only my life but the lives of those who intersect mine. I want to challenge myself to think in these terms -- the ripple in the pond -- that every action has an equal and opposite reaction.

I’m not sure where I am going with this but what has me on this path is seeing a bumper sticker on a car -- a large, gas guzzling Ford F250. It read,

"Why Should I Pay For Your Health Insurance?”

I became quickly incensed. I am bothered that somebody might think this let alone shop around for a bumper sticker to declare this. Most people, like me, who have someone they love that is uninsurable aren’t looking for someone to pay for their insurance but rather compassion and understanding and options. I don’t expect anything free. Those in similar situations like me don’t either.

But those words hurt because they sounded like the shouts of a bully on a playground. “Why should I? Huh?” You know, the boy hurling the volleyball at your head or knocking you off a swing. As evolved, mature people, shouldn’t we demand more from ourselves and others -- to be more human and kind, not to behave in a perpetual state of arrested development?

We often talk about moral responsibilities and doing the right thing -- a popular chorus in politics. And yet when the rubber meets the road, some retreat and care only about how things affect them and don’t take into consideration how their actions impact others.

This truck also had a Jesus fish. Seriously, the irony there almost made me careen off the road. How on one hand can you say you’re a Christian and another place a childish taunt on your bumper -- a selfish, whiny and inaccurate holler? Why should I pay for your health insurance? Well, first, if you had been listening you’d realized that nobody is asking you to pay for my health insurance. Truth is you pay already every time an uninsured person shows up at an ER for medical treatment. If you pay taxes then your dollars go toward Medicare and state insurance programs -- which is health care. Nobody is asking this angry man in his truck to pay more -- what we want is reform -- to make insurance companies accountable and competitive and non-discriminatory and if they can’t be then they should be put out of business.

People rail about death panels -- walk a mile in my shoes and you might think that the death panels are actually the private health insurance companies who aren’t interested in health care but in profits and pleasing shareholders. An underwriter who sees Autism on my son’s application reads no further and reaches for a rubber stamp --the red inked DECLINE tattooed across the top of his application. In the eyes of private insurance companies my son has a scarlet letter sewn onto his chest -- a scar in the shape of an A = Autism = not worthy of insurance.

I am exhausted by the misinformation that is out there. When I am driving my autistic son to school and see a bumper sticker like this, I can’t help but think,

“Who will you answer to someday? How will you explain your anger? Your selfishness? Your ignorance?”

I want to stop that driver and introduce him to Sean. I want to tell him my story, that I am a mother who is trying my hardest to take care of my child -- to help him be all that he can. I want to tell him that what he so smugly sticks on his bumper affects me and others like me who want to believe that we live in a country that reaches out and pitches in and cares. I don’t want a penny from this man. What I want is something bigger than that, more valuable than coins or paper. It’s the currency of compassion and kindness and the generosity of spirit.

Sunday, September 13, 2009

These Are The Days

Sean had a good first week at school. I don’t want to get too excited. He often has these “honeymoon” phases -- everything is new and fresh. But somehow, picking him up from school, his shirt collars poking near his ears, a backpack slung over his growing shoulders and his freckled arms outstretched toward me, I felt that maybe this time might be different. He seemed happy and even content -- a boy that I had not seen in a long time.

The other night I was talking to a very close person to me, filling her in the boys week at school. I told her about Sean, about how he seemed to be adjusting to his new school quite well. But then I got overwhelmed with sadness and heard my voice crack. For some reason I couldn’t help but think (and say to her),

“What if these are the best days I am going to have with Sean? What if this is as good as it gets?”

Then I sobbed. I know it is foolish to try to look into the future -- there is no glassy orb of what lies ahead. But sometimes I have these thoughts and they weigh me down -- cut me at the knees and I’m rendered completely helpless and immobile.

She reminded me that all I have is today. I have no control of the future. And yet, sometimes I forgot that raising a child with autism probably won’t get “easier”. All the work and sweat doesn’t necessary pay-off. My husband reminds me that sometimes we just get better with dealing with this disorder and managing our expectations.

There was a time that I thought Sean would outgrow a lot of his autistic tendencies. He would grow older and begin to read cues better and respond more appropriately. Life would be easier. The truth is, he has improved greatly but he continues to get older and he appears more different as each day passes.

When Sean was three or four or five others just thought he was “acting out” or “being a brat”. But now that he is eight, most people realize that there is more to it and that something is amiss. In some ways, I am glad -- so tired of the looks and comments and the eye-rolls. And in other ways, I feel a great amount of sadness as I am starting to see my son through the eyes of others.

We are so used to Sean’s quirks and behaviors that we forget how truly different he is. I sometimes see how other children look at him -- the younger ones find him fascinating, they smile at him and try to imitate. His peers and children older than him sometimes look at him oddly, strangely -- they don’t know what to make of him. Some laugh at him while others seem to avoid him completely. I don’t know if this all registers with Sean. I hope, for the most part, it doesn’t make him feel bad about himself. I don’t think it does but sometimes if I laugh at something that he says because I think he’s being funny he will stop, his eyes narrowing and say,

“Don’t laugh at me.”

I will explain that I am not laughing at him but at how clever or funny he is. Still, I don’t know if knows the difference.

My very dear friend is right -- all I have is today, the here and now and it’s futile to try to predict the future or imagine what life will be like down the road. Maybe right now are the best days with Sean. Maybe the best days are ahead. Maybe it will be much more difficult down the road and maybe it won’t. Nobody really knows. What I know for certain is that I want to savor the good moments, the bricks of the school shining in late summer heat and the smiling boy running toward me and swimming in my arms.

Tuesday, September 8, 2009

Life's Lesson Plan

The boys went back to school today. The ritual begins, seasoned with nostalgia -- a bittersweet reminder of my own childhood, crawling out of the covers into morning darkness, the air thick with the end-of-summer-almost-fall feel. It’s the passing of time; filled with anticipation and new beginnings and heavy with memories fading like poloroids left out in sunlight, bleaching out the familiarity of smiles and eyes.

My oldest wondered about his new teacher. What would she be like? Would she have a quiet voice or loud? Would she give a lot of homework? Sean didn’t seem to share in any of those concerns, although he did say quite firmly that he wanted “hot lunch.“ The last week before the start of school had been like the last couple miles of a marathon -- my patience growing thin, almost threadbare, muscles snapping and mind melting. So today felt like my body leaning into the finish line, the ribbon falling at my feet and arms raised triumphantly.

Another year has passed. Another year begins. And soon another school photo will be placed in the frame in front of last year‘s photos and the school photos before, (smiles with missing teeth, cowlicks and button noses) becoming distant glimpses of another time. My boys are growing, you can see it in these pictures, losing their softness and doughiness -- their features becoming sharper, more angular.

Last night the darkness creeped in, the moon hung high and fat, like a ripe peach waiting to be plucked from the sky. I pretended the moon was a lucky poker chip and slid it into the ante and thought, “I’m all in so let it ride.” I’m hoping this might be the year that I find Sean cuddled up in his bed reading a book or receive an invitation in the mailbox for a birthday party from a friend in his classroom. Maybe it will be the year where he looks at me plainly and kindly and says,

“It’s been hard inside here. But now it’s going to be okay. I’m here and I’ve missed too much.”

That’s the downfall to this time of year. The air moves like whispers, full of possibilities and magic, frosted in a sliver of impending cold. And yet there is only so much magic and often not enough to spread around. But I don’t want to give up hope. I am practical. I have played out the saddest scenarios in my head, hoping to build up permanent body armor underneath my aging skin. I don’t want to break too badly -- disappointment and expectations crumbling in my fists, rubbing dust from finger tips.

So today, I watch the army of yellow busses moving in teams to the schools, the exhaust like white hot steam and the sun struggling to crack the morning like the glossy golden yolk from an eggshell. And I can’t help but hope (or maybe dream) that this year might be a good one.

Thursday, September 3, 2009

To Health With It

I received another rejection letter from a health insurance carrier today. It reads, “Regretfully, the following applicant cannot be approved for coverage.

Applicant: Sean Bevins Reason: Autism”.

Sean has insurance now but anything associated with autism (doctor visits, therapies, medications) is not covered nor do the costs go toward our deductible. Worst of all, we don’t receive an R&C rate -- this is the reasonable and customary rate that insurance companies and doctors/clinics/ hospitals negotiate and put into contracts. This rate is substantially lower than the published rates at physicians’ offices and hospitals. So if a doctor visit costs $225 (and Sean’s visits do) we pay $225. If his autism was covered we would have an R&C rate, and we would pay that rate. Add to that, the $225 does not go toward our family deductible which is quite high. Each month we pay a premium and very little is covered. Our out-of-pocket costs and uncoverable expenses can be staggering. Speech therapy and occupational therapy (not covered) can run as much as $125 an hour. But for a child who struggles to communicate and/or has fine motor impairments these therapies are necessary.

It is strange to me to think we live in a country that allows insurance companies to discriminate against people, particularly children. My son didn’t elect to have autism. It is to no fault of his that he has this. It’s a difficult and trying neurological disorder that not only exhausts us physically and mentally but also financially. And yet it’s perfectly legal for him to be denied coverage because he is autistic. Clearly, we wouldn’t deny somebody coverage due to their gender, race or religion, but it’s acceptable to deny them due to a disability.

The next step is to apply for a state plan that pools together high risk candidates. This will most likely be very expensive and have a high deductible but at least he might have basic coverage for autism. We are keeping are fingers crossed that he will qualify.

It’s interesting to me to hear and read about the current healthcare debate. The people opposing it don’t want government in their healthcare. They say this loudly and with such certainty. And yet I am completely baffled by the irony. Currently, there are nearly 40 million people in this country who have health insurance through Medicare (a government run plan). The nearly 40 million people covered under this government plan are mostly those who are 65 and older. I am glad that I live in a country that takes care of it’s aging population. However, I would like to see more of an effort to reach out to everyone, at the very least the underprivileged and/or disabled and I cannot fathom why this is such a contentious debate.

Also, the idea of a public option is exactly as it sounds, an option. If someone doesn’t desire it he/she doesn’t have to choose it. But for those of us who don’t have options, a plan that doesn’t exclude somebody due to a pre-existing condition -- in our case, our son’s autism, might be an option for us to consider purchasing. Also, it could extend options to those who have no health care benefits through their employers or are self-employed. As health insurance costs rise, less employers are able to offer affordable and inclusive healthcare benefits.

I know many families that cannot provide proven therapies for their disabled children because insurance companies deny them coverage or exhaust them in the fight. For some of these diseases, disorders and illnesses valuable time is ticking away and the window is closing for their children’s success and well-being.

We live in a country that really has taken the care out of healthcare. There is little money to be made in preventive care -- my current policy not only denies coverage for Sean’s autism but it also doesn’t cover immunizations, breast exams or pap smears. It’s much more lucrative to treat cancer than it is to conduct physicals and well-being check-ups. I don’t think that bodes well for a civilized country. I understand that financial costs need to be weighed but at what price do we write off children, particularly those who face adversity in their young lives everyday.

Sometimes it‘s important to tune out the noise and the scare tactics. Let us not forget how critical the art of listening really is. Most times it’s the calmer, more rationale voice that makes the most sense. Take out the my and the me and replace it with the us and the we. Life is not an individual sport -- it’s a team effort.

Friday, August 28, 2009

Keeping the Faith

I have a picture of Sean in his baptism gown -- silvery white with puffed capped sleeves and lace trim. We took him to the church, waited in line with the other parents, to have him blessed in the cleansing waters, bathed in God’s benevolence. It was not so critical for me to participate in the sacrament but more about keeping a promise to my Irish mother that Sean would receive the sacrament -- God forbid he die in infancy and succumb to living out eternity in limbo caked in original sin. She had already administered her own baptisms of sorts on each of my children. When seeing her grandchildren for the first time she wet her fingers in holy water that she had brought back from Ireland. She did the blessing herself. It was no harm to me or the boys and I am a sucker for tradition and ritual. Besides, my mother’s brand of Catholicism fascinates me -- a mix between scripture, mythology, superstition and folklore.

As a child, if I lost something, my mother would say confidently, “I’ll pray to St. Anthony.” If it was a small miracle needed she would pray to St. Jude. If someone was having trouble selling their home then it was an appeal (and a statue burial) to St. Joseph. Saints were housed like a spice rack in my home -- sprinkle one to flavor a moment in our lives. I am drawn to stories, real or not. This idea to explain life’s mysteries through religion or mythology, literally or metaphorically, from a literary standpoint is appealing to me. It is a part of who I am. It is the core of my imagination.

We were raised to go to mass every Sunday unless the Chicago Bears were scheduled to play a game. Then my brothers were allowed to miss or go on Saturday evenings -- for them God ranked right behind the Bears. My brothers, sister and I would try to attend the mass with the priest who chain-smoked. His masses were quick, succinct, his nagging nicotine addiction hurrying things along and we were out in no time. We also would go to mass over at the chapel in the Catholic hospital. Afterwards, we would go to the hospital cafeteria and get donuts and orange juice.

As we grew older, we found ways to cheat out of church. One of my brothers would drive us to the parking lot of St. Julian’s Church. My sister or I would get out of the car, take a look around to see who was at 11 o’clock mass, check which priest was scheduled to say mass, grab a church bulletin and head back to the car.

“It’s Father Stephen and the Driscolls and Pat Edson were there. Let’s go get breakfast.”

Back at the house, we could hand over the bulletin (our proof that we went) and pass our mother’s quiz about mass. My mother used to go to mass everyday. When her mother died she stopped going pretty much all together.

There is no St. Kathleen, my given Christian name. Obviously, I won’t be filling those saintly slippers anytime soon -- I'm certainly not vying for the title. Not to mention no one could confuse me for a Saint, that’s for sure. There was a St. Catherine of Sienna who, for three years in her youth, received celestial visitations and had conversations with Christ. She later went on to care for the sick and dying. I don’t know much else about her butI know for certain that I am not named after her nor created in her likeness.

What I do know, is that from an early age, Sean has been drawn to water -- whether it be the highly chlorinated pools, rocky rivers, muddy lakes or the salty ocean. When he swims, his arms slicing in out of water, I imagine the sacrament of baptism, that he is drenched in enlightened waters, bathed in God and Mother Earth’s mercy and grace, immersed in healing, and his disability, for a moment, shedding from his skin and mind. Then I imagine him emerging in new light, in a new day, a new world where he is not thought of as a broken child or a throwaway, but rather a sage of sorts, a boy who can teach us to be kind and tolerant and loving -- to really capture the essence of Christianity that is so often missed in organized religions -- to be understanding and charitable, to practice tolerance and compassion, without judgment and to love freely without conditions. Leave the fire and brimstone in the hearth where it belongs, not in the minds and on the tongues of the angry and misguided. I'll take my faith sunny-side up.

Monday, August 24, 2009

I Don't Like Mondays

The Boomtown Rats got it right when they sang “I Don’t Like Mondays.” For most of my life, Monday has been a hurdle -- a cyclone fence topped with barb wire -- not the beginning of a new day or at fresh start to the work week. I have started and failed many a diet on a Monday. In my twenties, I pulled myself, completely unwilling, out of bed to catch the 125 city bus in the park for work on Mondays. I have ended most vacations on a Sunday only to wake Monday to the discombobulating racket from the alarm clock getting the boys dressed and fed and out to school by 8 a.m. still in a complete fog.

Mondays my husband gets an early start -- his cell phone alarm buzzing and ringing on the windowsill -- my oldest son, sleeping on the floor after having a bad dream mid-night, and Sean wide-awake, sitting on the back of my legs saying over and over, “Mommy, wake up.”

I can’t hand him off like a baton to my husband, he is not running in this race today. He’s participating in a different race, better known as the rat-race. On early Monday mornings, it’s just Sean and me, getting ready for an intense sprint.

Even when I was a kid, I despised Monday. My sister and I, still to this day, laugh about the ticking sounds emanating from the old Zenith on Sunday evenings -- my parents Pavlovian response to the tick-tocks -- clearing dishes from the table just in time to collapse into the sofa and watch 60 Minutes the Newsmagazine Show. For my sister and me, it was just a painful reminder that the weekend was closing -- all work and no play in front of us. Time to finish up homework and get our clothes ready for tomorrow -- for Monday. Time to start the cycle all over.

Mondays stretch out for me like the vast wilderness, the landscape perilous, the geography problematic and the dangers uncertain. And yet I have no other choice but to journey ahead, picking my feet up and throwing them forward. Mondays can set the tone for the whole week -- a difficult Monday can mean a difficult week. And Sean, he is the Magic 8 Ball who can determine what the future holds -- Ask again later or Not likely or Yes. I don’t think he wants to have such power, but the truth is, he does. Our lives are often mingled together -- a good day for Sean equals a good day for me -- an equation that relies wholly on the parts equaling the sum no margin for error, no rounding up. I say this with math not being my strong suit -- disappointing since my father is an accountant and one brother is an actuary.

So today was bumpy. Some fits and crying that didn’t make much sense. I let Sean ride his bike, careening across a large expanse of black asphalt, his legs pumping with purpose and power. He became whiny shortly after.

The afternoon we went to the swimming pool at a nearby college. Sean flirted with the pretty young co-eds and said to one of them, “I am going to marry you.” His brother turning scarlet behind him. They laughed and let Sean splash them. Not long after, he asked to leave because the water was cold, his body pimpled with goose bumps. In the car ride home, his brother practiced his guitar and Sean made up songs and then complained that he was too hot.

So now Sean and I are in the kitchen and he is talking about strawberry season,

“It’s over, Mommy. Strawberry season is over. No more strawberries.”

He is commenting on the empty strawberry patches in our and our neighbor’s yards. Truth be told, there hasn’t been any strawberries since late June, but this hasn’t stopped Sean from mentioning it everyday since. It’s blackberry season. Tomorrow on our walk we will pick the wild blackberries, careful of the thorny branches. I can’t wait to see Monday in the rearview mirror. Welcome Tuesday.

Friday, August 21, 2009

All The World's A Stage

The other day I called my husband at work, my nerves frazzled. Sean was having a tantrum for no reason that I could think of. If I don't know why Sean is upset there is no way to talk him down, to give him the peace of mind he so desperately needs. He spirals out of control until I can't discern any useful language. He grunts and screams, his arms and legs flailing, completely frustrated. I sent him to his room where he stormed off, yelling and crying and falling to a heap on his floor like a pile of laundry.

Add to that the toilet in the kids' bathroom wasn’t working properly. It kept running and filling up with water and the shut-off valve was intent on ripping off the skin on my palms as I tried to wrestle it shut with not much success. I couldn’t keep it together. It was Sean’s third tantrum and it wasn’t even noon. I was afraid that I was going to lose it -- scream and cry just like him and knew that if I did anything like that, the situation would be completely unmanageable.

After I sent him to his room, I began shutting all the windows to keep the hysterics contained to our home. I went down to the laundry room and paced back and forth taking deep breaths and covered my ears in an attempt to block out his yelling and screaming.

Then the thoughts came to me, crawling in my head, making the sadness almost unbearable. What is the point of this? Why does he have to suffer? Why do we have to live like this? I realize it’s pointless. It’s entering that dark black hole, circling the rim, then spreading arms wide open and falling forward into nothingness -- and who knew nothing could feel like a thousand pin-pricks. I called my husband and said plainly,

“I cannot do this anymore.”

My husband is having a stressful time with his work. His only employee gave him notice and he’s scrambling to fill a vacancy that he really can’t operate to long without. His wife can’t hold it together anymore and he can hear the not-so-faint sounds of his hysterical son in the background.

“Hang in there,” he says but he knows whatever he says will not be the right thing to say. In fact, he can’t win for losing.

“Hang in there?” I say, quietly seething. Not so much at him but just at everything. “I have been hanging in there for the past six years. Something is going to have to give.” '

Days like that are hard to balance in my weary hands. Like a heavy pane of glass, teetering in my tight grasp, every muscle cramped holding it steady so it won’t crash into a thousand tiny silver shards.

Sean eventually calmed himself down. He has gotten much better at this. When he came out his eyes were swollen from crying and his breath was quick and shallow.

That evening, we headed to our neighbor’s home. She is lovely and kind woman who has offered to have Sean be a part of a childrens’ theatre group that she teaches during the summer. This group is made up of seven neuro-typical kids and Sean. It was the debut of their play that they had worked on most of the summer.

I had put on some mascara and lipstick, pulled my hair back trying to hide the stress of the day. The room was packed with kids and parents and I was soaking with sweat, so afraid Sean wasn’t going to be able to do it.

He did it. Just fine. He had two small parts where he danced with the other children. His excitement was palpable. He do-see-doed with another little boy and he was perfect. My eyes were stinging with tears and I couldn’t stop them once they started. I have never felt such a surge of love for him as I did watching him with the other children. In the last song he danced with a red scarf, tugging it through the air, the gauzy material floating like a dream. He knew what to do and he was doing it. He had transformed in front of me -- not the autistic boy in his own world but any boy in a bigger world. He was accessible. It was a beautiful sight.

When the play was over I met up with my husband outside. He smiled at me and I could see he was overcome by the moment.

“He did great.” he said. It was the same look he had when our older son outplayed an opponent in hockey or lacrosse. He was proud.

I must have looked crazy. My face all red and wet with tears, I had an uncanny resemblance to Alice Cooper--my mascara puddling on lashes and cheeks. I should’ve known better than to put on mascara. When I found Sean, he grabbed my hand and he was back to his usual hopping and pinching the other kids. When we walked home he looked up at me and said,

“You sad, Mommy?” worry creeping into his little voice.

“No, Sean, not at all,” I said, my breath choppy, overcome with such a great deal of emotion. “I’m just so happy. So happy that you did so well. You were awesome, little man.”

The truth is, I saw my child in a different light. He was brave and eager, not afraid. He kept asking, “Is it my part, yet?“ his heart thumping against my hands as I held him back.

"Almost, Sean. Almost," I said rubbing his tight shoulders.

Earlier that day, in the heat of the battle, I questioned what was the point of this life and what lesson was there to be learned. By evening, my face still flushed, I came to the realization that despite all the challenges, this life of mine, these children of mine, this family of mine are meant to be. They are all that matter. It’s not something I can put into words. It was a profound and certain feeling -- something that makes me less afraid and hopeful for better days ahead.

Monday, August 17, 2009

Off We Go...

I found a picture of Sean and me at the Cliffs of Moher in County Clare. I am hugging him so tightly, his hair whipped by the heavy winds, his pink lips bent with laughter, behind us, the Atlantic Ocean pounding against the cliffs. The swollen clouds above us lingered, spitting rain and coldness on our necks. Sean was two years old, feisty and unpredictable. I am smiling but I know how scared I was that he’d be swept away by an indiscriminating current of air. I showed it to my husband and said,

“Remember when we took him on that long plane ride, when he was just two, to Ireland? What were we thinking??” We weren’t.

It was a family trip --my parents and all my brothers and sister and their families were going to the wedding of our cousin in Galway. We didn’t think twice. When we arrived at Dublin Airport Sean was a mess. His big brother, only four years old, trying to calm him as we waited for what seemed days in line at immigration. He cried, screamed and squirmed, too much for us to handle with the luggage and car seat. We ended up abandoning the car seat in a corner near the baggage claim area in order to free up our arms to help contain him.

We took a bus that dropped us off too far from our hotel. We were like the walking wounded, jet-lagged, strapped down with too much luggage, carrying one child and pushing the other in a stroller down the uneven streets of Dublin looking for our hotel. When we did check-in, we collapsed, exhausted while Sean, still wide awake, ran around the room, climbing on chairs and jumping on the bed. The three of us managed to sleep through it all.

We took Sean and his brother all over Ireland by bus. Up to the north, to the county of Donegal -- a little town called Drumkeen where my mother was born and lived for a time. We stayed with cousins who adored the boys, especially the little red-headed leprechaun that never stopped moving. We caught another bus down to Galway to stay in a little carriage house we rented in the neighboring town of Clarenbridge. The boys loved it but my husband and I felt that we were living in the Keebler Elves’ cottage, with tiny beds and chairs and a mini-stove. The rose bushes spilled over the fences and the boys ran up and down the gravel with a soccer ball. We went to the Galway races, hung out in the pubs and had lunches with family and old friends of my mother’s. Finally we took yet another bus after the wedding back to Dublin where we caught a flight to Chicago.

There is something completely innocent and blissful about not knowing. Sure Sean was a handful, but he was so clever and bright and beautiful. We had never suspected that he might be autistic. In a way, I’m glad we didn’t know. We might have never taken that trip. My children and their cousins played on the same land that my mother’s ancestors lived and loved and died. What a gift to share with them. We made the trip, unsuspecting of what was happening on the inside to our lovely child, not realizing that little by little, he was slipping away.

He remembers the trip. Or maybe it’s just the stories we have told him, creating pictures in his mind as real and alive as anything. I show him photographs of us in the hills of Donegal, where the land comforts the sea, the hills thick with heather.

“That’s me,” he laughs, “that’s me where Grandma’s people come from.”

Once the Druids and Irish pagans roamed those same hills, chanted around stone circles worshipping elves and fairies; and in the glossy pictures my children tumbled through those ancestral lands, carrying the humid wet winds on their shoulders, unaware of the sacred ground beneath their tender feet or the sweet breath of earth-gods rising up from the holly and hazel.

Friday, August 14, 2009

Tree Boy

Wednesday night I tagged along with my husband and Sean on their hike. Usually twice a week or more, my husband takes Sean over to Tryon Park -- a state park located in Southwest Portland. It was raining (unusual for August in Portland) and the trees and ferns were damp and the trail had turned muddy. Sean set off -- running and then stopping suddenly to climb into the arms of a tree. Sean knows each of these trees as he has hiked this area numerous times. He pulls himself up against the slick tangle of branches, careful not to crush the giant sticky slugs that are parked all over the trunk and arms, and he finds a sturdy bough. He climbs onto it and affectionately hugs it, his body one with the tree, camouflaged in moss and wet leaves, tickled by raindrops that make their way through the forest ceiling.

It is tender to see this. A boy happy with nothing else but the dependable muscle of a tree, embracing it like an old friend, his cheeks wet and dirty and a smile peeling across his face. I have to stop myself from wiping his face, pulling his wet, damp shorts up, tying his shoes or shouting after, “Careful, watch out for the tree roots!” I think he could navigate this forest in the dark, alone. There is a connection between him and this lush secret garden, a force pulling him through, the familiarity of the trees and the paths -- he feels more at home here than in the rest of the busy world.

He finds the little trails that bring him down to the creek, branches slapping after him. He immediately jumps into the water, a baptism of sorts, his gym shoes filling with the creek, and bends his head down to swirl his hair, his head soaking wet and water running into his eyes and smile. My husband watches him closely; he and Sean have done this probably a hundred or more times. This is their place.

“Daddy take me but you can come.” he said to me when we left. I’m a visitor by invitation only. I am grateful to have come along.

When we come home I scoop him up in my arms, burying my face into his tummy, cautiously, like the belly of a kitten. He is mine. He commands me to dance. “Dance mommy.” he says laughing, twirling in hypnotic circles, his arms open wide. I twirl with him, letting go of the day, just me and my boy, laughing and spinning.

Monday, August 10, 2009

Being Present

Sometimes I carry fear between my throat and the back of my tongue, like orange safety cones slowing me down, reminding me to be cautious but making my breath sluggish and my lungs overworked. The panic catching and closing my throat. Hope for me is sometimes like floating soap bubbles, glossed with rainbows, but far too tender, easily popped between careless fingers or a wayward branch or just simply out of my reach.

My son can’t read. He can’t write legibly. He can’t tie his shoes. Or wash his hair. Many times he puts his clothes on backwards or inside-out. What I fear most is what will happen to him, down the road. I can’t imagine my life without Sean but I also think he couldn't imagine life without us. We are a house of cards, each needing the gentlest support from each other. If one of us falls then we all do.

Sean is teaching me to live in the present by example. The past is in the past and the future is a luxury that I can’t afford. What is certain is the littlest moments, the ruffled red hair peeking out of covers in the morning, the boy spinning on the wooden merry-go-round, back arched, laughing or little sunburned arms and cheek smelling of chlorine. This is what I have. Today.

I've spent a lifetime musing about the future or over-analyzing the past. Taking so much for granted. Moving with speed and greediness, forgetting that life is finite, wishing it away or letting it slip through my fingers like wind -- until it is gone, distant memories that make me incredibly nostalgic.

I recently wrote this poem about Sean when I was thinking about how much he enjoys life without caution or concern. He swims in the ocean, rivers and lakes without much thought. As a toddler he climbed high up in trees or over fences, balancing his small body with perfect ease. I want him to be safe. I can’t bear to think of him hurt or scared or alone. And yet I admire his bravery and how he embraces the moments -- without over-thinking the past or future. He only knows how to live in the present, unencumbered and free.

A Bird in the Hand

I held him tenderly
a ruby throated hummingbird
his racing heart too quick
and impatient for this world.

He begged me to unfold his gossamer wings
Tucked gently behind angel bones
To lift him into humid air
Toward flowers drenched in nectar
His body growing restless

In my palms he thrashed and scratched
His escape futile.
I am far too selfish
To ever let him go.

Katie Donohue 2009

Friday, August 7, 2009


The weather has changed sharply. Last week it was topping out at 107 degrees -- Sean and I scrambling for relief in the public fountain park and the local pool -- and today the thermometer is struggling to make it to the seventy mark. It has just passed mid-summer, as far as the school calendar goes, and the school year is less than five weeks away. And honestly, I am worn out.

Sean needs constant movement so we have taken advantage of going for long walks in the cool mornings, just the two of us and the incredibly irritable scrub jays arguing in the treetops. During our walks, Sean skips and turns and breaks out into full-on sprints. He loops back to me and asks me more of the same questions,

"Why you have a nose?” “

What was your Grandma’s name?", and

What cartoons did you watch when you were a little girl?”

Sometimes, exhausted from this, I don’t answer him and he says to himself, “God gave you your nose. Margaret is both your grandmas and you used to watch Felix the Cat.”

Over and over this routine goes. We stop at a park in the middle of the path and Sean heads to the monkey bars, his arms and shoulders already showing signs of muscular development as he effortlessly pulls himself back and forth across the bars. He swings on the tire swings and goes down the silver slide. It is early enough so we have the park to ourselves. He starts his questions again.

"What is your Papa’s name?”

“How many people are named Mike?”

“Where is my Grandma from?”

I answer him (“Tim, Lots of Mikes, Ireland”) although sometimes to myself I think, “Please stop talking. No more questions.” This thought is quickly followed by a dose of guilt. He is my child. Clearly, it gives him comfort to go over and over with this routine. Be a good sport and play along.

Sean does not have much in the way of friends. Most children don’t know what to make of the boy who is clapping and hopping, making odd noises. There are few, if any, camps and activities for children like mine. He wants friends and he wants to play sports (“Daddy, what sport can I play?“ He asks when his brother is dressed in equipment for hockey or football or lacrosse) but he struggles to do either. Sean has to work twice as hard (if not more) than his typical peers. He is wired differently. Things we all take for granted are hard work for him.

As a parent, it can be extremely sad to see this -- a little turtle trapped lying on it’s shell, it’s small arms and legs kicking up in the air. I wish I could “right” it for him (and I wish it were that easy) -- place him correctly on the ground and watch him scatter away with an army of friends or onto a baseball field with teammates. What comes so naturally for my older son is a complete puzzle for Sean. He wants it but he's not quite sure how to get it.

It can be a lonely world for him. When I am annoyed with his questions and feel crowded by his constant company I will remind myself that he has the same needs as any of us -- the comfort of others, the need to be listened to and the desire to belong. It’s really that simple.

Monday, August 3, 2009

Locked Out

Lately, Sean has been removing the knobs off of the kitchen cabinets, dresser drawers and door handles. I don’t think he’s intentionally trying to make us go mad, but nonetheless, we slowly are. He is also locking doors; the doors to our bedrooms, to the bathroom, the sliders to the kitchen and the deck, the front door and garage door. We find ourselves constantly stalled -- grabbing a knob that catches on the lock and keeps us from moving forward.

My older son has put pennies underneath the trim of all the doors.

“Look, Mom, if you get locked out there’s a penny right under the door.” he says removing the penny and sliding it into the lock to unlock it.

He grins, impressed with his solution. He is such a flexible boy -- laid back and forgiving. He tries to work around it, while my husband and I bubble over with frustration.

“Sean! Why is my door locked?” I yell, my arms filled with laundry that needs to be put away.

He hustles up the stairs, grabs my thigh and says breathlessly, “I’m sorry, Mommy. I love you.”

“Sean, do NOT lock my door anymore. Understand?”

He nods his head but his focus is waning and I know that it is a struggle for him to manage these compulsions. I know, at that moment, he means it. He will not do it. But minutes later, he has given into the compulsion, his promise lifting like fog and my door is once again locked.

When my husband parks his car in the garage and cannot enter the house, he bangs his fist and shouts, “OPEN UP!” He has had a long day, the weather is unbearably hot and his entrance to our home has been hindered.

I open it up and he looks frustrated. “Why are all the doors locked?”

I look back helplessly, “Don’t get upset with me, I didn’t do it.”

He lowers his head, wipes his brow with his hand and says quietly, “I know. It’s just so annoying.“

We both know this. We are always having to manage our stress -- like ice building up on street curbs, we have to remember to spread the rock salt, lower the temperature, melt away the hazards. We have to work as a team. There are the moments, “You’re blaming me!” or “I can’t be responsible for him 24/7.” But at the end of the day, we are on the same side -- we just want our boy to move forward -- to unlock his potential.

This will fade. He will move onto something else. Last month it was switching the lights off and on and off -- our house looking like a European disco at nighttime. Before that he refused to use his fingers to carry things, he pinched his toys between his wrists. And before that he used to lick his shoulder every couple of minutes.

When I told him not to do this, his eyes grew wide and he said, “I don’t have to do it?”

It took everything in me not to cry in front of him. Poor little guy. When he said that it was like passing me a decoder ring or showing me on a map the strange place where his mind roams.

I have to remember this. It isn’t deliberate. He is just a boy with small shoulders and a heavy sack strapped to his lean back. He does his best to carry it but sometimes he needs a break. He needs somebody to lift the burden, to put it on her stronger, larger shoulders and to occasionally lighten his load on this journey.

Friday, July 31, 2009

Back Back

I often think how much less our parents were in our lives than we are in our children. They preferred to watch us from a distance, offer us independence early on while we stand so close, anxious and eager to smooth every little bump and stumble for ours. It’s not a criticism but more of an observation.

We seemed to run free in our neighborhoods. There was no such thing as a “playdate.“ That would have seemed absurd at best. We would play in the corn fields all day. The field mice running quickly near our feet and the flies buzzing against our sunburned faces. We didn’t have sunblock, of course. (Add to that, no hand sanitizer, either.) If it was around it was far too precious to spend money on. The word “proactive” wasn’t part of anyone’s vocabulary. Instead, we had Palmer’s Cocoa Butter or Noxema to slather on our burnt necks and legs. Or cold baths with vinegar. “Reactive” was a word and that’s how most incidents were handled.

My older brothers collected beer cans (can you imagine today, letting your kids collect empty, dirty beer cans and letting them display them pyramid-style in their bedrooms??) and my sister and I would catch salamanders and trap them in the steel milk box. We never went into people’s houses to play -- we played outside mostly, unsupervised. I couldn’t tell you what the inside of our neighbor’s house looked like -- I do know that all of their kids’ birthday parties were done in the garage and the mom used to hand us windmill cookies out of her screened door.

My parents also had a cottage on a small lake in Wisconsin. On the summer weekends we would hustle into the VW bug and head up old Route 12 to the lake. Seven of us piled into a tiny VW bug. My youngest brother and I would call “back back”. It was the tiny boot behind the small backseat -- really in modern terms, a death box. No car seats, no airbags to decapitate the heads of children weighing under eighty pounds, only the sudden rear-end crash that would clearly end us all (at the very least, my brother and me). We squished in the back back, with hardly any room to breathe. the growl of the engine blocking out any dialogue and yet we were delighted. Yet, somehow, we seemed to always remain unscathed. We were a lucky bunch, weren’t we?

It's one of my favorite memories -- the red VW bug, all seven of us squished together, heading to the cottage, a weekend of swimming and playing at the park. Up until Sean's diagnosis, my life has been pretty carefree -- for that I am grateful. When I think of my life before Sean‘s diagnosis I laugh sadly to myself and say “back, back.” During the tough moments, when Sean can't be soothed and we are all exhausted, I wish I could, for the briefest moment, go back back. I want to ride carefree and happy, hot wind knotting my hair, not knowing what is about to crash into me.

Monday, July 27, 2009

Good Grief

When the diagnosis was definitively made, it felt like falling through time and space, my arms stretched wide open and my chest burning red. I had known it was coming. I had put Sean’s “symptoms” into a Google search engine, like a vacationing retiree stuffs quarters into a slot machine, hoping to come up with stacks of golden bars or ripe red cherries but walking away with only empty pockets.

When the words were said out loud by a doctor it was like being punched in the throat. I could hardly breathe. Once the words were spoken it all became real. It had breath and muscle. It was not going away. This was nothing that I could fix.

I still remember that day. I can still see Sean playing on the floor with stacking rings. I remember seeing my husband reach for my hand but I could hardly feel his, my fingers numb and my palms damp. I knew the words were coming like a commuter knows the time of his morning train. But when it arrived I remember wishing I had put off the appointment, covered my ears or left. It hurt so much more than I had anticipated.

Sean's official diagnosis is PDD-NOS Pervasive Developmental Delay - Not Otherwise Specified. Somehow the NOS part always makes me chuckle. PDD-NOS -- the acronym sounds so definite and exact. The Ah-ha! When the reality is that it's incredibly uncertain and vague. That's the tough part of autism. There's so much ambiguity. The spectrum is large, a vast sea of symptoms and degrees. It's the holding cell where you are initially placed.

It took a long time for it to really sink in -- the diagnosis. I would watch my older son at the park or on the soccer field, his face salted with freckles and his cheeks flushed, laughing with his friends, and I would feel such sadness in my bones. I would walk past a park full of little kids on swings, their small feet tapping the sky and my heart would catch in my throat, my eyes stinging. Why? It wasn't the end of the world. We would make the best of it, right?

I couldn't understand it until a friend explained to me that what I was feeling was grief. I was grieving for the life I thought Sean would have. For the life I thought all of us would have. I was sad for my older son who wouldn't have a brother like I had promised him when Sean was born. A play mate. A best friend. And mostly, I was grieving for the boy Sean might have been if it were not for autism.

In time, I learned that grieving was actually good and normal. I had to dry out the wounds, let go off the heaviness and to love, completely and fully, what I had and give thanks. I had to not only for me but for my husband and children. I had to grieve and I had to move forward. I couldn't remain stuck. The diagnosis already took away so much from me and I couldn't afford to let it take anymore. My family needed me. I needed me.

Life is tricky. In a blink of an eye, everything can change. One moment your course is set for one direction and in an instant, it breaks like a thick vein of lightening bolting you in the opposite direction. Is the lesson not to become too comfortable or to live in the moment or take nothing for granted? Maybe it is all three. Maybe it is none of these.

I used to think I had much more control over life's outcome. The older I get the more I realize how complex it all is. I've learned to take each day as it comes -- peel off the skin and head in teeth first and eyes shut. In the end, it's all a gamble. There are no guarantees. There are no sure bets in life. I'll take my chances.

Thursday, July 23, 2009

Poetry in Motion

Some days I like poetry best. It's powerful, yet can be wrapped tightly in the fewest words. Poetry can be impatient -- I like how firmly and smartly it gets to the point -- it doesn't have the luxury to "talk it out". It is certain and yet dreamy. Good poetry is a sliver of the best chocolate that melts slowly and the memory of it stays with you all day, all week and even a lifetime. It might be a handful of lines on a napkin and yet the dimensions and shapes of the words can be potent and limitless. It's the McGyver of literature really -- the fewest odd words can be constructed into a bomb that can tear an enormous hole in my heart.

Sean is poetry to me. He is limited in how he can express himself, and yet when he does, sometimes it is the most lovely observation. My favorite is on a rainy fall day when he started sniffing the air, a trained bloodhound it seemed and said simply,

"The clouds smell good. Can you smell the clouds, Mommy?"

It was the scent of cold damp earth and wet evergreens - it was simply the smell of clouds. I would have never thought that clouds would have a particular scent, but after he said this, I was completely tickled. He also loves the smell of sunshine.

On a warm day in June on our way to school he stopped with sudden purpose and said simply, "Smell the sun."

I took a deep inhale and smelled the ripe strawberries in the patch, the bloom of rhododendrons and azaleas, and the musky leaves of the Japanese maple. Where would these all be without the sun's warm caress? This was not lost on Sean.

When Sean dances and spins and hops there is rhythm to his movement, there is poetry echoing in his ears. His smile is large and eyes bright, the look of an old soul surfaces and I wonder if he is much more a part of this world then I and/or others give him credit for.

The first poem I wrote about Sean is one of my favorites. Mostly it is a favorite because it is a reminder of how far he has come. I wrote it in third person because I needed to find safety in distance -- we were new to the diagnosis and unfamiliar with what it would mean to us as a family. At the time, it was too hard to write in first person -- I needed to buffer myself from the sharpness. I sat outside of myself and looked in and this is what I saw and this is what I wished for.


Flapping arms,
a flightless bird
in a nest of wooden train tracks.
He stops for a moment --
Small fingers curl around a tank engine.

He pulls away from her like
a cheap iron-on
or the peel of an apple
into the sink,
to the drain.

She wishes on
fallen eyelashes,
other children’s’ birthday candles,
pollen that she catches
like a whisper
in her fingers
that he will wake with words
wet on his lips
like shiny drops of rain
spilling from his tongue.
She will ask,
"Where have you been, my boy?"

katie donohue

Monday, July 20, 2009

The Climb

This past weekend my husband, two boys and I headed to the Mt. Hood National Forest to camp. The mini-van stuffed full with a tent, blow-up mattress that had a not-so-slow leak, a grill, propane, swimsuits, food, pots, pans, cooler...

We got a campsite along the Salmon River, an icy tributary of the Sandy that meanders down the mountain, tickling over rocks and fallen trees. Sean knows this spot well. He has camped here almost a dozen nights. He gallops down the trail, over uneven rocks and splashes his feet into the water, throwing his arms back and squealing -- his balance certain.

"Careful," I tell him, in the middle the current runs quick and the rocks get larger, more intense. He puts his arms into the water and then dunks his head -- his red hair slick and dark. This is where Sean is the happiest -- away from asphalt and traffic, people and expectations. There is nothing here except thick firs and cedars, blackberry bushes, lush ferns and the rush of the river, his body keeping time with the rhythm of water.

At night, we sit around the campfire, Sean roasting his marshmallow over the heavy flames, the fire licking his melting glob, turning it to a black bruise. He doesn't mind. His lips and fingers sticky with sweetness and ash. He is delighted.

The sky turned into inky blackness. We could see very little but shadows from the fire and the citronella candle burning on the picnic table. The kids and I made our way into the tent, the mattress slowly depleting of air, a mushy sheet of plastic covered in velour, not protecting us from the rocks and sticks underneath the tent floor. My husband slept in the mini-van -- his hip sore and the sight of the dying mattress completely unappealing. We slept soundly, the river rushing with fury and muscle.

In the morning we drive to Lost Lake, a gorgeous alpine lake, crowned with gigantic firs -- the jewel in the middle -- a perfect view of Mt. Hood. My husband and the kids rent a canoe and I went on a hike around the lake.

What I like most about Mt. Hood is the snow that ices it's edges and points. The glacier is resilient, not giving in to the unrelenting heat from the sun. Never surrender. I wish I could have such perseverance, that I could hang on so tightly, the proverbial David battling Goliath. How does it remain so undisturbed by hot, piercing sunlight? In the valley the weather tops ninety degrees, but the mountain remains frozen like held breath.

When I am tired and feel like giving up, I want to remember that view -- the north side of Mt. Hood -- like rippling muscular shoulders with the brightest white snow -- sturdy and dependable.