The Yellow Chair

“Bahamas.”

“What did you say, Sam?” I asked. Sam plopped on my bed in his usual position and responded definitively, “Bahamas.” I glanced at his iPod to see if he was watching something about the Bahamas. He was watching Blues Clues - something about Side Table wanting to be in a show. Nope. Nothing about the Bahamas.

“Bahamas,” Sam said again, making it clear this was the topic he wanted to discuss. Sam had never mentioned the Bahamas before. I didn’t know he knew the word, let alone the place. That mattered little. When Sam wants to talk, we talk.

"OK. The Bahamas." I said. "What about the Bahamas?" Sam responded, "White sandy beaches. Turquoise water."

I laughed and said, "Yes you are right. Are you a travel agent?" Maybe he had seen some TV ads or a video on YouTube. "Tell me more about the Bahamas," I asked.

Sam added in rapid succession: 

"Big window. 
Blue slide. Yellow slide.

Yuck in the water.

Bubble in the water.

Under in the sea.

Under the bridge.

Yellow chair."

Wow. A lot of information. I had a feeling it related to something but I didn't know what. Why were the Bahamas on Sam's mind? Sam had visited the Bahamas two times, true, but the last trip was well over ten years ago. I'd never seen evidence he remembered back that far. So what was this sudden interest in the Bahamas?  Where did a yellow chair fit in? 

I tried to get Sam to chat a little more but for Sam, the conversation was over. He had turned his attention back to Side Table and her problem about getting a chance to perform in the show. 

This morning something clicked. I had recently scanned some photos and loaded them onto my phone. Sam always plays with my phone. Buried in with the recent photos was this:

The yellow chair. Taken in the Bahamas when Sam was five. A few photos later was this:

Taken under one of the bridges in Atlantis, the fish blowing bubbles.

Though I only had these three pictures, it was all there. All of it: the yellow chair. The blue slide and the yellow slide. The bridges. Walking "under" the sea. The fish and their bubbles. Everything. Even "yuck in the water" (seaweed to the unenlightened). Sam was describing a trip to Atlantis we’d taken many years ago. A trip I haven’t mentioned to him in many years. And he wanted to share his memories with me. Wow. Lesson learned. Sam remembers. 

Wow. Wow. Wow. And wow. 


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The diagnosis

“He doesn’t talk much” I remember someone saying, “are you worried about that?” Truth was, I wasn’t. I thought everything about Sam was perfect. Over the next month, I heard other moms whisper similar concerns.

At Sam's check up his pediatrician dismissed the worry. "Boys often talk late," he reassured, “Give him another month.” Much as I liked his answer, something made me investigate further.  Two months into a six-month wait for an appointment, a cancelation at Children’s Hospital brought us to Boston on a bright January morning. Sam was two and a half. I hoped it was a short detour in our happily ever after life, that the doctors in Boston would echo Sam's pediatrician.

We were met by a team of smiling doctors. Introductions were made. “Isn’t he a happy boy. Look at those rosy cheeks,” one doctor remarked. “Oh if I could have those thick curls,” said another before they whisked Sam away to a separate room. “You’ll chat with us,” said yet another doctor, “We’ll need some history.”

A few hours later the same smiling doctors reconvened and delivered several blows.

Certain words still resonate global delays, auditory processing deficits, motor planning difficulties and sensory disorder. The words “behind his peers” assaulted my ears again and again and again. I studied their faces and tried to understand.

A phrase I’d never heard before, “Pervasive Developmental Disorder (PDD)” was mentioned, debated and dismissed. Though they were not all in agreement, Sam’s stellar eye contact and joint attention prevented consensus within the group.  The look on one doctor’s face said in a sea of bad, this was possibly a very small glimmer of good.

They concluded with the words, “Connect with Early Intervention.” They smiled and complimented Sam’s beauty once more. They wished us luck and we were dismissed. We talked idly on the drive home, struggling to wrap our brains around the information provided; to make sense of this new foreign language. Sam, blissfully unaware, sang happily from the back seat.

I sat alone with Sam that night humming as I stared into his eyes and studied his face. Everything was different. Though I tried to dismiss it, I knew something had changed irrevocably. A dense fog had replaced the future that was crystal clear a day ago.

With Sam on my lap, I typed in the words, auditory processing, motor planning, global delays and sensory disorder and searched the Internet. As inconceivable as seems today, I only got six hits. I opened the first link. It began with the word “autism” followed by the words, “a devastating lifelong disorder.”

I closed the computer and took a deep breath.  

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2013. The year of goodbye.

As I count down the waning hours of 2013 I can’t recall a New Year’s Day without my father. For the last 13 years, he joined us for every New Year’s Eve as well. Each New Year’s Eve, the phone would ring: 

Jin. It's thy favorite father.

Um, dad. You are my only father.

Well even if you had others, I'd still be your favorite. So when are you coming by?

I liked that about my father. He was secure in his place with me; sure of my affection. He was certain of everyone’s affection. It never occurred to him that he wasn’t universally loved. He was genuinely surprised the handful of times he found out otherwise. Truth is, most people did like him. Once he flashed his infectious grin, he could get away with almost anything. I miss my adventures with him. And yes, I suspect even presented with other fathers, he'd still be my favorite.

He won’t join me this New Year’s Eve, of course. For that reason, I am reluctant to close the door on 2013. 2014 starts a year in which he doesn’t exist. It marks the first full year he isn’t part of my life. I am not ready to put him squarely in the past. I want to linger in 2013 a little longer where I can still find him. Where I can still reach out my hand and almost touch him.

I am afraid if I stray too far from 2013 the sound of his laugh will grow too soft. I won’t hear the lilt in his voice as he calls out, “Jin!” I won’t be able to conjure up his smile. The image of his sturdy hands, the hands I studied thousands of times, will grow dim. I will forget which finger bore the scare from an old construction accident. I will loose my optimism without his steady presence. I am reluctant to enter a world without him.

But there it is. The future sits as it always has, squarely before me. The countdown continues, picking up greater and greater  speed. I hear my father’s clear voice, telling me, “Jin, what comes, comes. You can't stop tomorrow from coming.” 

No, you can’t. It is time to go forward.

But I won't let him go. I will etch it all in my mind. I will carry his laughter in my heart. I will take his well-loved ancients with me. I will carry him with me however far I travel. I will begin tomorrow with his smile. 

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Patina

I bought a table some time back. It was big, sturdy and distressed from an earlier life. Tony questioned the price but I said it was worth it. We wouldn’t fret over each dent or mark; in fact, our wear would add to the beauty and become part of its history. I liked the idea of leaving a “fingerprint” behind. Hopefully, one day this table will pass along to someone else.

The beauty of the well-worn fascinates me.  I imagine the stories behind the marks. Who used this before us? Was it always this rich shade of golden brown? Where has it traveled? Where has it yet to go? How did it achieve this lovely patina?

Wear and tear are unavoidable. Bumps, bruises, wrinkles, and scars, they are all part of living – a visual proof of endurance, an inevitable part of creating history and memories. That wear and tear eventually become our personal patina.

There is beauty in what is pristine and new, it’s true. I am sad when something is chipped or altered.  But the only way to preserve perfection is to curtail use. A vase tucked behind glass is safe but rarely finds itself full of flowers.

I don’t like the wrinkles that announce the passage of time. I try not to sweat those inevitable changes, though. I am learning it is better to have patina than beauty. Beauty fades. Patina endures. Patina grows richer with each passing year.

Without a little patina, there has been no life.

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An old country man

If my father were here, he’d tell you his father was an old country man. He would say with a certain pride his father came here at a very young age, unable to read or write English. He would tell you that armed with a dollar pick and shovel he built a business that continues to shape lives three generations later. He would tell you his father eloped with the girl of his dreams, rebelling against every convention of his day.

He would also tell you my grandfather lost that girl during the depression, leaving him with nine children to rear. He would tell you his father managed to keep his family together and kept his business going during trying times. That he raised four sons who served their country honorably. He would tell you his father did his best under the most difficult circumstances. “Not bad for an old country man.” He would say.

It was through these stories my father taught me about family, loyalty, work ethic and honesty. I learned about honor and humility. I learned about giving back when he shared what his father had told him, “Do good and forget.” He taught me without my word I had nothing.

My father's stories were constant in my life.

There was one story my father told frequently, saying it as he heard his father, right down to the Italian accent. It sounded like, “Nonj you know? You no go looking for me. I go looking for you.” “Do you know what that means?” my father would ask. “It means no matter what you do, I will always be your father. Nothing you do can ever change that. It means you didn’t ask to be born, I invited you here.”   

When Sam first showed signs of differences, my father told me to believe in Sam. “Things have a way of working out,” he said. “He is a beautiful boy. You wait, he will surprise you.” As he watched Sam he would add, “Don’t forget what your grandfather said: 'Nonj you know? You no go looking for me, I go looking for you.’ Sam didn't ask to be born. We invited him here.” I heard those words many times over the years. They were among his final words to me regarding Sam.

Today on what would have been my father's 90^th birthday, I remember the words of my father and grandfather. Tonight I will say them to Sam, to honor my father’s memory, to keep his stories alive.  I think my father would like that. I hope Sam will find in them the security my father found and the security I was lucky enough to know all my life. 

Nonj you know?
Yes, Dad, I know. I finally know.

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A busy June weekend

It was a pretty big weekend. We broke in a new behaviorist, Sam participated in an art show and there was a wedding.

First the behaviorist: We are delighted to have the extra set of eyes and ears and hope he can help untangle the communication behind Sam’s behavior. Collecting all the data is tedious; we repeatedly run through the litany of questions. Still we know it will bring us to a better place.

We’re off to a good start. Sam has been pretty accepting of this intrusion into his life. The behaviorist is armed and ready for anything Sam throws his way. So stay tuned. 

Next, the art show: First off, it was juried. Second, Sam’s work was accepted. Third, they chose his drawing, “Colored Hearts” for the invitation. How cool is that? Sam, who avoids noisy crowds, was in his element at the opening. With a huge smile he happily posed by his artwork. He sold “Colored Hearts” and his second entry, “Two Pears” is under consideration for sale. Not bad for his second juried show in his entire lifetime.

And now about that wedding: Sam casually told me he married Vanna White on Sunday. “Huh?” I asked. “You married to Vanna White?” “Yes,” Sam confirmed definitively. “What about MaryKate? I thought you wanted to marry MaryKate.” Sam seemed unconcerned saying, “No MaryKate. Vanna White.”

The funny thing is, I was with Sam all day so I don’t know how I missed the wedding. Still, he assures me he is married to Vanna White. It must have been a very secret ceremony. As far back as I can remember he has wanted to marry MaryKate. And now he has run off and married Vanna. Well OK then. Life is full of surprises.

As Sam’s mother, I am wrestling some obvious issues: Vanna is older. She probably lives in California. I think all those letters she turns captivated Sam and stole him away from MaryKate. Many thoughts run through my mind. How will this work? Will Sam be happy? Should I clear my clothes off the guest bedroom bed? Will I get a spot on Wheel of Fortune? Is the alphabet alone enough to sustain a marriage? Maybe. Sam does love his letters.

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The burden

The words slipped out of his mouth with seeming ease. They were spoken before I could stop them. “Of course, you love your son, but I can’t imagine the burden of living with him.”

He was attempting empathy. He was trying to understand my life. But he had it all wrong. Though I was surprised by his words, I didn’t respond. Perhaps because of my silence, he thought I hadn’t heard. He said again “I can’t imagine the burden you carry. All the work.”

He couldn’t imagine my life. I understood that. Fair enough. Perhaps I wouldn't understand his life either. It can be hard to understand a life you haven’t lived.

I watched him shake his head again saying once again, “all the work, the burden of it all” and then trailing off. In total he used the word “burden” four times, making it clear he saw the only sadness in my son’s existence. I smiled politely, responding, “I don’t see Sam that way.”

I thought about his words after he left. About how someone, without ever meeting Sam, could sum up his life into the single word: burden.

If I thought he would have understood, I might have partly agreed. Sam IS a lot of work. He had that right. I would have then suggested most everything worth doing requires effort. Most of life’s achievements, large or small require work.

I might have pointed out the difference between the words “work” and “burden.” I might have said I look at our life with a sense of satisfaction. That we are in a good place, that there is joy in our life, joy in our home.

I don’t think he would have understood.

There was a time when his viewpoint might have crushed me; when I would have felt compelled to argue Sam’s worth. A different viewpoint no longer defines us.

A single word does not define Sam.


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Our lens

In the beginning I had a plan. I had certain dreams. Certain expectations. But life doesn’t always respect a plan. That is how it was with us. There was the “plan” and what actually came to pass.

Our early years became a blur when Sam showed signs of atypical development. I was hurled into survival mode while trying to make sense of it all. At the insistence of the specialists and the folks at Early Intervention, survival quickly morphed into “fix it” mode, effectively entering us into a war with destiny. Everyone was consumed with changing the path we’d been put on. They told me time was my enemy. I struggled to help Sam keep up as time spun relentlessly.

Each day was a roller coaster of highs and lows; a jumble of emotions, intricately tangled together, exceeding what seemed humanly possible. Emotions so big I thought they’d swallow us whole. I struggled; enamored with the child I had and saddened by everyone’s desire to change him. Unsure of what to do.

Sam, all the while, took most days in stride; forcing us to slow down, even stop to find joy in little things we might have otherwise missed. Within the sea of doctors and experts advising us of how to “fix” our child, Sam was the “voice” of reason, compelling us to find balance between the world we were told we wanted and the world we’d been handed. 

In a blink, eighteen years passed. And in spite of everyone’s best efforts, Sam’s path never changed. The only path that changed was mine.  

Raising Sam changed forever the lens I used to view life. He altered every perception, every understanding of what was important. He challenged every belief I held dear. He humbled me. He made it impossible to ever be the careless person I once was.

At first it was hard to let go society’s image of perfection. I didn’t know anything about raising a child with a disability. I was flying blind. Some days seemed endless. Progress was often slow. But somehow on the most difficult days I’d look into a pair of bright dark eyes and see a smile with the power to melt every frustration, to make everything inexplicably right. I knew the warmth of a hand that reached into my heart, compelling me to surrender.

Slowly over time I reconciled myself to the challenges; learned to see the perfection in what we had. And eventually there was peace. As we charted our own course I finally opened my eyes and saw before me the child I never expected, but knew beyond any doubt was exactly the child I’d waited my lifetime to find.

And it was good. 


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