Tuesday, February 23, 2010

A Winter Poem

I have been working hard in trying to live in the present and not dissect the past or ponder the future of my life. So many people have their lives mapped out -- this is what I will do, when I will do it and when I will move onto the next stage of life. I have never been much of a planner but I wasn't prepared to have a child with a disability.

I had assumed that you marry (for me at 26) four years after that you have your first child and the second one 18 months after the first child. You love them and care for them. Take them to their practices and lessons and save for college.

But in our case, it didn't exactly work out like that. Coming to the realization that there was something amiss with our youngest child triggered the brakes and brought our lives to a screeching halt. We were stuck. What we had taken for granted was not to be. In order to move forward, to get through the day to day, we needed to focus on the present and not get lost in the past (grieving for the baby he once was) nor explore the future (what is going to happen to us?)

I tried to explore this with a poem. I don't know if I succeeded but I felt better after I wrote it.

Winter Sunshine
(nothing is forever)

Frail empty birch tree branches
Cradle a cold February sun

An offering of hope,
Like a warm child
Hugged in tired arms

Days run together too quickly,
My legs are sore from chasing
The day
When he comes back to me.
And he is the boy I once held.
Newborn head nuzzled into my shoulder
Ginger hair like fuzz on my neck
Lips puckering
A guppy
Waiting to be fed.

In my dreams
He comes back,
That baby
With the sleepy eyes
And pale cheeks.

I should’ve held him more,
Lingered in the bliss of not knowing.
But nobody knew.

I am unsteady at the precipice.
The volcano dormant
Calcified in ice
The bottom echoes like a hungry belly
Rocks rattle under my feet
Freefall into blackness.

I know better than this.
I need to turn around
And go back.

I carry clouds like gauze in my fingers,
And walk toward the sun.
To trust it.
To hold it.

To let worry
And heartache
Fall like snow
From overburdened clouds.

To spill over treetops,
And lawns,
And stoplights.

The sun hangs
Like a Florida orange
Against a backdrop of porcelain blue.

I will peel back the skin
And embrace the fire
If only for a moment
Until it softens
Like butter sizzling in a hot pan
Melting into
Western sky.

katie donohue 2010

Tuesday, February 16, 2010


I have been overwhelmed lately. A feeling of disconnection has come over me and I am struggling to make sense of it and to feel connected once again. The irony is that this disconnection evolves from our modern world with its sophisticated and savvy technological advancements that are intended to keep us connected at all times. I have texting on my cellular phone, email retrieval on my I-Pod Touch, voice mail at the home phone, internet on my laptop and wireless throughout the house. So much information is coming at me -- bombarding me at all times reminding me to check my Facebook account or text a fellow mom about coffee or reply to a volunteer email or a beep from my I-Pod alerting me of new email. At times I just want to turn EVERYTHING off and hide. Shut it down. Be free of the constraints of it all. I want to disconnect.

On a much smaller scale, I think it gives me a glimpse of what Sean must feel many times throughout the day -- a lack of connection and belonging -- snowballing into a feeling of isolation and a need to be alone. I think my son isn’t unaware of his feelings or input from the world, but rather, he is overwhelmed and scared from the amount and the constant activity. He wants nothing more than to belong and yet the rules of the game require so much commitment and knowledge that it is just too much for him bear. I guess what I’m trying to say is that it’s not that he is sometimes alone in his own world entirely by choice but maybe more because it’s his only sense of wholeness, it’s a tactic for survival.

My sister said to me the other day on the phone, “Perhaps Sean is a reminder to all of us to slow down, to take a deep breath and to just be.”

I think that’s true. I sometimes find myself wide awake at 3 a.m. torturing myself with all that I haven’t accomplished, deadlines that I have missed and paperwork that remains undone. And then I think about what I am going to do the next day and began to make mental lists in my head, meanwhile robbing myself of any sleep or peace. By morning I am a shadow of the person I need to be and I’m trying to operate in a fog as the demands keep growing. Check the email -- 40 unread messages. Voice mail on home phone hasn’t been checked in days and I can’t even find the cell phone.

Maybe Sean has it right. Maybe he and other children like him are shouting silently to the rest of us to Stop! Take a step back. Give ourselves a fresher perspective. Hold in our hearts the things that really matter (and which are not things). Life shouldn’t feel like a dizzying merry-go-round, our feet kicking up dust and our hands chasing after something to hold onto, to pull us aboard so that we can move in circles. Maybe the secret is only to simply be still and let the world unfold in front of us, to slowly drink it all in and to just be. Maybe the bells and ringtones and alarms are distracting us from what matters, deafening us from hearing the strong, almost silent beat of the heart.

So today I am trying to rise above the noise. Who is to say that this world we live and work so hard in is “normal.” Maybe Sean’s approach is normal and it’s the rest of us that could use some help. Now wouldn’t that be ironic!

Tuesday, February 9, 2010

Have You Met My Cold Sore Yet?

Last week started out rough. On the heels of the biking meltdown on Sunday, it was followed by a “driving Dad to the airport” nightmarish tantrum. We were happily on our way. Sean had the day off of school and was free to accompany me on the drive. As we drove over the Morrison Bridge, the Willamette River running steadily underneath, Sean realized he had forgotten his DVD player.

“Oh no!” he said, his hands busy looking all over for his bag that held the DVD player, “Where did it go? Oh no, I forgot it! We have to go get it! We have to get it NOW!"

“Sean, we are not turning around to get it. You’ll just have to wait until we get home.” I said firmly, bracing myself for the fallout, my knuckles whitening on the steering wheel.

And then it came -- screaming, tears, kicking the back of my seat, shrieking and mumbling. We were ten minutes into a twenty-five minute ride -- fifty minutes if you count the ride back.

“So much for getting some work phone calls in,” my husband lamented.

One of his employees called and he answered amid the nuclear meltdown and told her he’d have to call her back. Luckily his two employees know the situation and weren't concerned that our son might be on fire in the backseat.

Sean finally calmed down at the airport, his breath still shallow and his face wet with angry tears. We said good-bye to Dad and headed back home. I could feel a migraine starting behind my right eye and thought, “Oh just perfect.”

The next day, Tuesday, I had to drive my older son to his hockey clinic. Since my husband was out of town, I had to bring Sean with me for the thirty minute drive. Five minutes into the drive Sean said in sheer panic, “Where is my DVD player?!”

Oh hell, here we go again. I had put the DVD player in his bag, along with the Finding Nemo DVD he was crying about minutes earlier (“Where is my Finding Nemo DVD!! I am never going to find it!”) I found it and told him to bring it with him to the car. For some reason, unknown to me, he took out the DVD player and carried his bag with only the Finding Nemo DVD.

“WE HAVE TO GO GET IT!” He screamed, my older son covering his ears.

“No, Sean, we are not going back. I told you to make sure you brought it with and you took it out of the bag. God knows why. Besides, you won't even watch the movie anyways.” This was true. Sean's need for the DVD player was not so much associated with him wanting to watch the movie. It was just an unexplainable desire -- a need that he have his DVD player with him regardless if he were to watch a movie or not. And this made the argument that much more illogical and difficult.

The screams, the kicking and now the “getting out of the car seat and trying to sit in Mom’s lap while she drives in the bad traffic” began.

“Sit down!”, I said loudly, trying to push him back into his car seat while steering the car. At a red light the car jumped up and down matched only by the ear splitting screams.

His brother tried to calm him. He made up a story about a DVD player fairy who was at this very minute delivering a new DVD player to our house. This didn't calm him down. He wanted HIS DVD player and he wanted it NOW.

“That’s enough!” I said, “You are going to break the window. Stop right now!"

After about five more minutes he calmed down. We pulled into the parking lot to let out his brother and I let Sean play in the snow piles that were left from the zambonie clearing the ice rink. When both boys were out of the car, I collapsed my face into my palms and had a good hard cry. I was scared and tired and sad and I was at my wit’s end.

I went to check on Charlie and saw a couple other mothers who smiled. I smiled but then felt the tears cluttering in my eyes and hurried out to get Sean. He came sprinting from the snow dunes, smiling and happy. How quickly his mood changed from one moment to another. It was exhausting.

So the next day, Wednesday, I woke with that tingling feeling on my lip -- that dreaded, “make room for a big, ugly cold sore” kinda feeling. And sure enough, by Thursday, it had made it’s entrance, a large, puffy sore on the top left of my lip. No makeup could cover it. Unless I was okay with wearing a fake mustache (I wasn't) there was no hiding this monstrosity.

On Friday I went for a check-up with my doctor. She immediately noticed the cold sore and said,

A cold sore? That's not good. Are you worn out? Are you stressed?” I laughed (because laughter can often mask tremendous sadness.)

“Is there anything you can give me for it?” I asked desperate.

“There is something. It smells like charcoal and it’s supposed to help clear it up a little sooner but I think you should just wait the 7 to 10 days and let it clear up on its own.” She’s a good doc and well aware of my lousy insurance. My guess is that the ointment was spendy and it made more sense to just live with it an extra couple of days.

So, now it is Tuesday. The sore is still here -- lovely as ever. In addition, I also got a painful pimple in the corner of my mouth. And I can’t forget this little bump on my chin that periodically sprouts a wiry blond hair that is as thick as dental floss. I’m calling it my Bermuda triangle.

Getting old is no fun. Having a child with autism has sped up that process. Worry and stress are everyday occurrences in our lives. Some weeks are tougher than others. And last week was a particularly tough one.

Hopefully by next week, the cold sore and pimple will be gone and I’ll have a chance to pull out that whisker (what am I, a cat?) Even when I try to keep the worry and stress inside it has an odd way off getting out, of sharing with the world that sometimes life isn't very pretty.

Tuesday, February 2, 2010

Sunshine, Biking and Meltdowns

Sunday, the last day of January, the sun hung high and warm in the sky and the mild wind smelled of damp earth and wet grass. Living in the Northwest for the past five years I have learned how critical it is to seize a sunny day. Sun rarely makes much of an appearance during the winter months so when it does make a show it’s “Carpe Diem”.

My older son was tired from an earlier 6:30 a.m. hockey game and bailed on us. Sean had swimming class -- a ½ hour of swimming, floating and kicking -- rewarded by cannonballs and leaps from the diving board -- however, not making much of a dent in his bottomless energy tank. A bike ride? Heck yeah. He ran to put his shoes on and scurried out to the car while my husband loaded up the bikes in the mini-van.

We arrived at the trail, clicked on our incredibly tight and odd feeling helmets and headed out toward the trailhead. What a gorgeous day! The sun melted in the blue sky, cottony almost cartoonish clouds moved lazily resting on the shoulders of budding trees and red cedars and firs. The creek lingered over the pale rocks -- the sun making them sparkle, erasing the grayness and the northwest tree frogs croaked in the wetlands. Sean pedaled furiously, his small strong legs and calves flexing. I could see a smile underneath his helmet, happiness and sunshine making his eyes squint.

I was happy, seeing us together and moving along, soaking in the goodness of it all. Our moods had clearly matched the perfect day. But then it happened. Maybe around the five mile mark -- a mile short of the parked mini-van. The chain on Sean’s bike came off and he came to a stutter and than a complete stall. I called to my husband ahead of us to stop. Sean pushed down his bike angrily and began pacing, each step tighter, firmer and tenser.

My husband turned Sean’s bike over and began working on the chain. It’s an old bike. It was his brother’s bike that we got from a yard sale years ago. The chain was old and rusty. Sean’s pacing turned to muttering. The chain wasn’t cooperating -- stiff and stubborn -- mimicking Sean. Then Sean fell apart. He started hopping and flapping his arms and hitting his helmet.

“I want to go home!” he screamed, drowning out the whimsical music of the frogs, birds and the children at the adjacent park. “NOW!” he screamed.

And then he threw his head back and let out shrilling screams -- like a person being mauled by a cougar or someone falling into a campfire.

"Stop it.” I said firmly and calmly, “It’s not a big deal. Daddy is fixing it. See?”

But he was gone. Lost to any logic or common sense.

"Hurry,” I said to my husband the panic building in my voice, my head throbbing from my tight helmet and the stress of the situation.

My husband had pinched his finger, he was shaking his hand but went back to it steadfastly. Meanwhile, people passed us -- an older woman walking her collie, holding the leash in one hand and a small blue bag of poop in the other. She stared at me hard, gave me an eye roll as if to say, “You are useless.” I didn’t respond. I didn’t engage. I silently laughed to myself and thought -- “At least I don’t have dog crap in my hands.”

Two women power walking came from the other way -- big sunglasses covering their eyes but there mouths formed into horrified arcs -- similar to Munch’s portrait “The Scream”. Again, I said nothing and looked away from them. But inside I was devastated. I couldn’t calm Sean down, he was lost to me -- he was stuck in his world where his bike was broken forever and that he was never going to make it home, EVER. No words no gestures, no simple touch could comfort him. He was unreachable.

His screaming scared me. I was afraid someone would call the police. This is a common fear for parents of autistic children. A person watching from afar, afraid to ask if everything is okay but rather calling the police to report an out of control child or possibly an abusive situation. I have friends who have greeted police officers at their front door -- a complete misunderstanding and yet the pain and humiliation still heartbreaking.

“Just push the bike. What if somebody calls the police on him? On us?” There are houses that back up to the trail -- I was quite certain my son’s meltdown echoed in their yards and homes -- maybe someone thought a child was hurt or being attacked. Who would think that this child was so completely upset and angry and frightened just because the chain fell off his bike? But that was all it was. Welcome to our lives.

Finally, the chain linked on and my husband right-sided the bike. “Come on, Sean,” he said tenderly. My husband is kind and patient -- much more than I am. I had been saying over and over, “Stop it! Calm down. You are overeacting It’s not a big deal.”

My husband smiled at me and said, “It’s okay now.” I tried to smile and managed to eek out a small one -- our secret code that we are in this together.

For once in my life, I didn’t cry in front of strangers who looked at me with such disgust and disappointment. I didn’t mutter out, “He’s autistic. What’s your excuse?” I just let it all go -- for me, for my husband and mostly for Sean. It didn’t matter. Some people will never get it. And some people don't want to get it.

What Sean will have to learn is that the chain comes off a lot in life. Things seem to be going smoothly and then suddenly the chain slips off and no matter how hard he pedals or steers he won‘t be able to move forward. He will have to pull over and take a deep breath and realize that it can be fixed -- with effort and concentration. And then he can get back on his bike and move forward again -- a little wiser and more confident. It’s not the end of the world. Setbacks are temporary and not forever. I just hope someday he will understand that.