Thursday, August 25, 2011

Six years

I guess I'm supposed to have something to say.
Something wise.
Something heartfelt.
Oh - and something new.

I don't.

I actually told someone I was going to post:
and leave it at that.

Not sure anyone wants to hear the same old things.
Especially me.

The tears most bitter
slip silently from
summer sunglasses.

Yesterday was six years since the end.
Not only the end of Dave's life on earth,
but the end of mine as I knew it.

But it also marks six years
of a new beginning.

Yesterday was also the first day of school.
And as we placed flowers on Dave's rock,
I thought about how in an hour or so,
the building behind us would come alive,
empty, echoing rooms would fill
with laughter and lecture,
with cheers and complaints,
and all the drama that is high school.

Dave loved the first day of the school year.
It's shiny and new and fairly bursting
with promise
and hope.

It's a chance to start over,
to get it right this time.
Fresh and clean.
He loved it all.

The acrid smell of just-sharpened pencils,
lined up just so.
Squeaky, too-white shoes.
A box of new crayons,
every point still defined,
neat rows, like little soldiers.
The carefully chosen outfits,
designed to look as if
the wearer didn't give it a second thought.

The empty pages of a grade book,
yet full of possibility,
not yet written.

The warm bear hugs for people he knew.
"So good to see you,
how was your summer?
How are you?"
And he really did want to know
how you were.

Smiles for new faces.
"I'm glad to know you."
And somehow, he could sound,
every time, like he'd been waiting,
just to meet you.

He gave his very best to each one.

"You know Shell,
nobody cares how much you know
until they know
how much you care."

So he found ways to care.
Loud music coming from his portable.
Louder cheering at assemblies.
Crazy assignments.
Crazier clothes.
Briefcase held together with duct tape.
Walls papered with pictures and notes.
Funny cartoons of Sheriff Joe on the white board.
Guitars and Hawaiian shirts.
A listening ear.
A place to eat lunch.
A shoulder and a kleenex.
A nudge in the right direction.

He believed in those kids.
And wanted so much for them.
And demanded so much from them.
He pushed and challenged them.
Supported and believed them.
Stood up for them.
Stood up to them.

Bev Bos tells a story of a little boy who came to preschool one day, feeling a little cranky.  She greeted him warmly, only to be rebuffed.  After a few attempts, she said, "Well, if you change your mind, I'll be right here."  And the little guy looked up at her and said, "Oh hell, Bev, you're always here."

Perceptive for four years old, eh?
Presence is key.

That was Dave.
Always here.
Fully present.
Open door.
Open heart.
Kids could count on him.

The first day of school
is a marker.
It's also a chance
to leave some things behind.

A time to re-create.
To be re-born.
To let go of mistakes.
To do better.

And you don't have to wait for the start of a new school year.
I think this is why Dave actually liked Mondays.
It's a new week.
Another new start.
Another chance.

There's a song by Casting Crowns that says:

Jesus You know just how far
The east is from the west
I don't have to see the man I've been
Come rising up in me again

In the arms of Your mercy I find rest
'Cause You know just how far
The east is from the west
From one scarred hand to the other

Jesus casts out our sin.
We are re-born.

And on this day,
six years ago,
Dave was re-born,
into a new and perfect life.

I, too, was re-made,
into a life far less perfect.

I still have the first day of school.

And so do you.
So make a new start.
Hug somebody like you mean it.
Risk being vulnerable by caring too much.
Believe, really believe, in what seems impossible,
but you know is important.
Stand up for someone.
Cheer louder than you need to.
Forgive someone.
Forgive yourself.
Go to K-Mart, buy a box of new crayons and take a whiff.
It's a new year.
It's a new day.

Sunday, June 19, 2011

Baby flies...

How did this happen?
I knew it would.

My Kate. Little Red. Baby Cakes.
She's in Germany, on the autobonne. Heading to a Mercedes-Benz factory.

I always knew she'd go far.
Not "going far" as in being successful, although that's a certainty as well.
But literally. Going far...far away from lil Walla Walla.

This child has had the world by the tail since before she could walk. She was born into it. Dave had waited through four pregancies before getting his girl. He adored her without reservation. And so did her brothers. On Grant Street, the sun rose and set on a little girl with copper ringlets who wrinkled her nose and stamped her foot and filled our house with sweet giggles.

She was always a little miffed when the rest of the world didn't stop on a dime for her. She fully expected it should. She was a keen observer and a real thinker. At preschool they thought she was shy. Far from it. She was carefully watching and considering. She could describe the actions, thoughts, emotions and motivations of her classmates. She's always been one to look below the surface. To never take things at face value.

When she was barely five she said, "Mommy, is Santa Claus real?" Our policy had always been to be truthful. Our culture is saturated with that stuff and we tried to help the kids sort out what they believed. So I said, "What do you think?" With Zach, this had led to a long discussion about the probabilities of reindeer flying and how to factor in the changing of time zones around the world. When I asked Kate the "what do you think" question, Kate put her hands on hips, in a pose that was already signature, and said, "I didn't ask about what I thought. I asked for the truth." Okay. Okay. This was going to be different.

And different she was. Delightfully so. Dave said, "She has music in her head that only she can hear," as he watched her dance across the floor. Like Dave, she rarely walked. Step-ball-change, cheney turn, leap, glide, bounce, twirl, skip. But not walk.

Her brothers love life in Walla Walla. Kenny is fiercely loyal, and Zach likes the pace of life here. Slow and rolling, like the hills that surround the town.

Not Kate. She regularly asks to move to Seattle. She loves the big city life. The noise, the people, the lights, the hustle & bustle. She was perfectly at home in Chicago, not awed by the skyscrapers, not at all amazed by the fact that you had to take TWO elevators to get to the top. Not intimidated by the El or the taxis or the airports, navigating her way like an expert. Completely in her element. "I love it here," she beamed. "I can tell, baby, I can tell." Her sense of confidence is amazing.

The big world calls to something in her. And she responds. She wants to see it all. Go everywhere. Do everything. I always knew her inner landscape was wider than most. She reaches for things that others can't see, or even imagine. I knew those wings, curled in and waiting, would stretch out someday and carry her away. I just didn't know it would be so soon.

She's off to Germany and Spain. She'll be gone a month. A month. And she'll be fine. She has talents that world travelers need. She can pack for a month is a small suitcase. She can find all the important signs. She never gets lost. She gets me un-lost all the time. She doesn't worry.

Me, I worry. Not about her. About planes and weather and people in too-fast BMWs. About e-coli and sunburns and all kinds of things. But her? No. That little red has the world by the tail. And if the world knows what's good for it, it will cooperate.

Fly high, baby girl. My love is in you and my prayers surround you. This is just the beginning.

Saturday, April 02, 2011

Autism Awareness

Open Letter to the World: (from!/AwarenessIsNotEnough

(The first part is from the Autism Understanding and Acceptance website. I have left it in its original format, even though I would change a few things - particularly the capitalization :D. I have added our story after the words "This is what autism means to me....")

Awareness is not enough.

We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance.

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.

This is a call out to the world to understand the people and the disorder.

This is a call out to the world to accept the people and the disorder.

You can not understand or accept the people until you understand and accept the Autism they have.

Autism is a part of who they are.

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves... we ask you... no, we need you to know what Autism really is.

Today, we ask for your Autism Understanding and Acceptance.

This is what autism means to me.

Autism means grief and loss.

I found out I was pregnant with Kenny on the first anniversary of Kyle's death. Such dreams were symbolized in that little pregnancy test stick turning pink. A new chance, new hope. I imagined, as most expectant mommies do, a million things about this child to come. What would he look like? Maybe he would be tall and strong with warm eyes like his daddy. Maybe he would be a reader, loving words like his mommy. Maybe he'd be like his grandpa and find satisfaction in solving complicated equations. Would his heart be okay? I wondered and worried and painted endless new realities in my mind.

Then he arrived, beautiful and perfect and healthy. Such absolute joy, fueled by relief, filled my home and my heart. It was going to be okay.

He grew into an active toddler with blonde curls and eyes that were neither brown, gold, green or blue, but a kaleidoscope of all those colors. He laughed and cuddled and ran us ragged. He talked. And talked. It was going to be okay.

Until it wasn't. One day, at Wayne Deckman's wedding, Kenny was restless, so I took him out of the sanctuary to a church foyer. Kenny was climbing up and down the steps. I tried to amuse him with the usual games. "Kenny, where's your nose?" Ordinarily this resulted in delighted squeals and a small index finger placed on that cute nose. This day, nothing. "Kenny, where's your nose?" Nothing. "Kenny, where's your tummy?" Nothing. Now tinged with a bit of alarm, "KENNY, where's your chin?" I pulled him close, and in what was to become a habitual gesture, touched his chin to turn his face to look at me. His eyes darted away from mine. Seeds of doubt were planted in that moment.

Within six weeks, Kenny went from 70+ words to almost none. He screamed. And didn't sleep. And ran through the house in a frenzy, jumping and climbing on everything. Was he deaf? Was it allergies? Was it teething? Was it his shots? Was it me?

It took months to get a diagnosis. And the day the doctor said, "Yes, it is what you thought. It is autism." In my head, I screamed, "NO! I take it back, he's fine. He's fine. He has to be fine."

But he wasn't. I wasn't. Dave wasn't. Nothing was fine. I watched the dreams I had for my baby crumble and fall. What would his life be like? No-one could answer this question. No-one. Would he read? Would he drive? Would he make a friend? Marry? Be happy? Questions flooded over me, like a waterfall over a rocky cliff.

Autism has robbed my son, my family. I remember looking at Kenny, riding his little scooter down the sidewalk, knowing - this is the very same child I loved yesterday. I love him today. That is the only thing that hasn't changed. Everything else is different.

A recurring lesson in my life has been to love what you have, to not live in the grief of what you no longer have. But, still, that grief has to be acknowledged. The loss is very real.

Kyle's death was nothing short of devastating. And I do think that his death allowed me to be a better mother to Kenny. On our very worst days, I could still be grateful. I could place my hand on his chest, feel that heart beating solidly, and be glad. I knew it could be so much worse.

But at the same time, it was. Kyle's death had an endpoint. A time when it was over. The learning to live with that loss is ongoing, but his death was one event. With autism, the losses just keep coming. Day after day, year after year, you find new things you must give up.

Autism means change.

Everything about autism requires change. I had to change what I did, how I did it and who I was.

We turned our life and our finances upside down to find a treatment that would help Kenny. Our criteria was, if it can't hurt him, we will try it. Auditory integration, sensory integration, physical & occupational & speech therapy, relationship & play therapy, nutrition and diets, behavioral interventions, vitamins, yeast treatments. And on and on.

We worked with him 40-60 hours per week. We enrolled him in an inclusive preschool. We had consultants from UCLA come. We recruited and trained Whitman students to work with him. We videotaped sessions, had weekly meetings and I stayed up all night to review tape to make sure we were consistent.

I became the mother from hell. I learned how to advocate. How to be the voice for a child who couldn't speak. How to keep him from getting chewed up by a system that doesn't know what to do for a child like him. I spoke up, spoke out and fought constantly. I changed. Dave changed. Our marriage changed. It was all-consuming. Autism consumed my every thought and action.

Dave suffered. Zach suffered. Kenny suffered most of all. And it was like trying to empty the ocean with a teaspoon.

I prayed constantly. Some days I hated God. Some days I was filled with self-pity. Some days I was filled with anger. Some days I was filled with determination. Some days I was filled with doubt. I was about as cuddly as a porcupine on crack.

Kenny fought therapy. We had to pad the chair. He thrashed and lashed out. He wouldn't sit down, much less do any other task. Our UCLA consultant told us that was a good sign. He realized he was giving up control. I clung to that hope. I doubted and wavered and thought, maybe this was a bad idea. And then one day, the therapist said, "Do this," and put a block in a cup. Kenny looked straight at the therapist, picked up the block and put it in the cup. Never mind that two seconds later he was throwing himself on the floor in a rage. He had done it. In that moment, we discovered ourselves on a new road. This new road was still not that beautiful garden path I had imagined. It was dark and full of pitfalls and dangers still, but it was headed in a new direction. It was headed out of this abyss called autism.

Autism means joy and hope.

They say there's nothing like the joy of hearing your child say mama. Kenny said mama a million times before he was 17 months old. And, yep. I was overjoyed. "Mama, he said Mama. He knows who I am!" I reveled in the sound of his voice. But I've got to tell you, that was nothing compared to what I felt when Kenny said his first word for the second time. We were looking out the window and a school bus drove by. "BUS!" he exclaimed. Bus. Yes, bus. My baby said bus. No-one in the world but Kenny and I know how many hours, how much effort, how many tears and prayers were in that one word. Bus. To this day, my heart warms when I see a big yellow school bus and I always wave at the driver. I'm pretty sure the bus drivers in Walla Walla wonder about the crazy lady in the silver suburban, but I just can't help it. Bus. Bus. Was there ever anything more beautiful than the sound of that word? BUS!

There's an old saying that goes something like this: Your problems come bearing gifts.

It's true. Like Kyle's death, Kenny's autism has meant incredible pain. But there are two sides to everything. Coins. Stories. Grief. Loss. Love. All of these have many facets.

Because of Kyle's death, I can treasure things that might have annoyed or frustrated me had I lived a different life. Would I change it? In a New York minute.

Because of Kenny's autism, I have discovered many things. Would I have given anything to have learned those things in another way? Of course. But it is what it is, right? This is the life I have. This is the life Kenny has. And even along the darkest parts of this journey, there are scattered gems on the path that sparkle and shine in the gloom. If you can see them, if you can bring yourself to pick them up, they are gifts. Maybe not always the gifts we longed for, but gifts just the same.

I have witnessed the generosity of the human heart in so many ways. From Whitman students who gave up their Ultimate Frisbee time to teach Kenny how to talk and who are his facebook friends today to preschool teachers who carried him on their hips when he was cranky to teachers who found ways to value Kenny's unique way of being in their classrooms, to other moms who sustained me, to those incredible kids who would become Kenny's friends. I have so many stories.

Once, we were at the park at one of Zach's baseball games. Kenny was playing on the rocks by the end of the duck pond. Another child found Kenny and they started playing hide-and-seek. Kenny was about 8 and fairly verbal by this time. I watched them a bit and they seemed to be doing fine so I watched the game. I watched Zach catch. I watched him pitch. I watched him check where his brother was between every play. Then I heard it. All the other autie moms will know what I mean. That sound that's somewhere between a yell and a donkey's bray that children with autism use to indicate distress. "Here we go," I thought, and got out of my chair.

Before I could get there, a boy from Kenny's school who was an acquaintance of Zach's, stopped the game of catch he was playing and went to Kenny. He put his hand gently on Kenny's shoulder and said, "Hey buddy, it's okay, just breathe." And he waited a second until Kenny calmed down. Then he said, "What's wrong?" And Kenny launched into this frenzied explanation. But the boy figured it out. He patted Kenny on the back and said, "It's okay, we'll work it out." And then he said to Kenny's hide-and-seek buddy, "Kenny only knows the regular rules to hide-and-seek, so you can't really play things like Ninja hide-and-seek. Changing stuff kinda freaks him out." The new kid said, "Okay. Come on Kenny, we'll play the regular way." And off they went. Kenny and new kid to play, and helper boy back to his game of catch. It took about two minutes. That two minutes was a magical, life-changing gift. That boy didn't have to help. But he did. The new kid didn't have to understand. But he did. I watched Zach's game through tears.

There are so many examples of this. Teenagers who gave up their Saturdays so that Kenny could play baseball and be on a team like his brother. And then there was football. Kenny said he wanted to play football. Oh crap. Oh crap. Now what? Surely if he was gonna get beat up or teased, this would be it. But who am I to put barriers in front of my son? So, football it was. And I watched, anxious and on alert for any signs of bullying or berating. Do you know what I saw? Star athletes stopping to help Kenny tie his cleats. Linebackers helping Kenny get into position. Coaches high-fiving him. Amazing is not a strong enough word. Jason Parsons arranged for Kenny to be able to make a touchdown in the 5th quarter of a Southridge game. It was one of the high points of Kenny's life. His buddies elected him most inspirational player. Not once, but twice. His schoolmates voted him Homecoming King his senior year. The yearbook shows a picture of Kenny with a globe. He was voted "Most Likely To Be Friends Forever - With Everyone."

Remember when I wondered if he would ever make a friend? Kenny's autism has given people an opportunity to show the best of who they are.

And Kenny? He will staunchly tell you that he no longer has autism. There are still struggles. There are still things to come to terms with - daily. I do not want to give you the impression that our battles are over. Far from it. But Kenny is happy. He looks like his dad and reads (maybe not quite as much as mom), but math has eluded him. He does make friends. He is fierce about sports. He takes classes at CC. He loves drama and has a part in the play - Kevin Loomer is an answer to a prayer. He has a job (thanks, Ann North Jones) and navigates around town on the bus. He texts his friends (A LOT) on his phone and likes everything on FaceBook (except the Huskies, the Yankees and the Steelers). He has a good heart and is honest to the core. He loves and lives passionately.

Do I still wish autism had never come to our family? Absolutely. 100%. Yes, yes, a million times, yes. I can never, ever find words to express how much I wish that. The only thing I wish more is that cancer and heart defects had also never come to us. This trifecta is ugly and has robbed us of more than even I know.

But the tiny voice of hope will not be stilled. I have hope. I have moments of pure joy. And I have love.

Do your part. Donate. Volunteer. Educate yourself. Speak out. Vote.

PS. One more thing that you can do. Remember Your words are powerful. Words shape our attitudes and our attitudes influence our actions. It's more than being politically correct. Use People First Language. Kenny is a person first. Autism is something he has, not something he is. He is not autistic. He has autism.

Kenny two days before diagnosis.

Kenny after the touchdown.

Kendra, Kenny's beautiful homecoming date, shows him who really wears the crown!

PPS. You can comment below. :D It makes me feel less insane when you talk back.

Saturday, February 19, 2011

Simba, Mufasa & Rafiki

Remember the Lion King?
Remember the Circle of Life?

I've been thinking about it a lot.
I find myself actually thinking in cliche's.
About seasons turning,
winds of change,
things like that.

Once upon a time,
my children were babies.

I held them, rocked them, sometimes I couldn't even put them down for a nap, I just held them the whole time. I admit to being a bit more...what's the word? Attached, hovering, paranoid? ...than most moms. After all, I knew what it was to lose a child. And I held those moments dear. Savoring every moment. Watching dark eyelashes flutter against perfect pink skin, listening to little contented sighs. Breathing in the unique scent of those little tufts of baby hair. Touching little rosebud toes.

I couldn't imagine anything better.
And then they grew.
Sticky hands, wobbly steps, hugs back, squeals of laughter and hearing "mama."
Surely this is the best it gets.
And then they're in preschool.
Silly songs, making friends, having ideas of their own, investigating the world, showing it to you through their eyes.
Sheer bliss.

You get the idea, right?
And while I discover something new to love each time, each stage, there is a part of me that realizes that I'm working myself out of a job. I had a moment of grief, of mixed longing and mourning when each of my children turned nine. After all, 9 is half-way to 18, and at 9, I knew, half the time I'd been given was gone.

Home is where your story starts.
But it continues to grow somewhere else.
This is that circle, that cycle, that change of seasons.
It's supposed to be that way.

When Zach began his senior year, I knew that there were many things we were doing together for the last time. Like carving pumpkins. College kids don't generally travel home for Halloween.

What would I do when he was gone, living in some dorm? How would I sleep at night when I couldn't look into his room, hear him breathe and know he was safe?

And here we are. Zach is halfway through his freshman year at OSU six hours away. I have survived four months. 120 nights. I'm okay. He's okay.

Not to imply it's been a cake-walk. Even good change is tough sometimes. We took Zach to Corvallis in September. We helped him unpack. It was hard work and Kate wouldn't help in protest. Eventually, we were tired and hungry and cranky. We got dinner and then took Z back to the dorm. He got out of the car and walked toward that huge brick building. He turned and waved so I could get the required picture. I prayed then, and got a bit teary-eyed, but I was okay. I know many things. I know that Zach is where he is supposed to be. I know that God loves him, even more than I do. And I know that Zach loves God. Those things help. It's time. It's time for him to move forward, to (cliche' again) spread those wings and fly. It was okay.

And then on the way home, Kenny said something funny when a song came on the radio. And a few hours later, when the song came on again, Kate repeated what Kenny had said. We all laughed. And then Kate gets quiet. "What, baby?" With a serious look on her face she says, "When Zach comes home for Christmas and we do that, he won't know what we mean." We weren't even home yet, and we had already created an inside joke without him. And then I cried. Really cried, realizing that we were, once again at a place of division. This crossroads would be defining. A before and after sort of place. A time where we could look back and look ahead and see that the two were not the same. A place where everything changes.

I'm proud of the man that Zach is. He works hard. He's intelligent and thoughtful. He's strong in his faith and he's a kind and loyal friend. I enjoy his company and I'm grateful to have him as a son.

Do I wish for things to go backwards, to what they were? No. Even though I do miss having Zach here. I miss getting to talk to him daily. I miss his hugs and hearing his laugh. I miss tripping over his big shoes and I miss the sound of his voice. I miss listening to music with him. I miss his funny rants about random things. I miss his passion and how fired up he gets. I miss his enthusiasm and encyclopedic knowledge of sports. Sometimes I even get a bit nostalgic for his crankiness. And every once in a while, I wish I could hop in a Delorian and zip back to 1992 and scoop up that sweet baby again, hold him close and bury my nose in his hair while he held my ear.

But only for a minute.
Only for a minute.
For if we live in what was,
we miss out on what is.