Thursday, August 29, 2013

A burp in the conversation

Conversations. We are desperate for them. Closing circles of communication has been a focus for as far back as I can remember. I am constantly on the hunt for ways to communicate.

Sam isn’t often in the mood to chat, though. His communication attitude is laissez-faire at best, leaving me chasing down topics other folks might find unusual or even undesirable.

Exhibit A from last night:

(Loud belch) He burp-ed
Thank you for sharing that. I heard you. The word is ‘burped.’ Now, who burped?
He burp-ed. The Sam burp-ed.
It’s ‘burped.’ (my finger pointed at Sam’s chest) Who burped?
         I burp-ed.
Sam the word is ‘burped.’
I burped. Is loud.
Yes it, was. Ewwww.
Is disgusting.
Yup. And….
Feel good.
Great. Happy to hear it.
(With pride) Is disgusting. Sam is disgusting. Yes.
Yes, Sam is disgusting. What do you say when you burp?
I burp. The Sam burp. ‘Scuse me.
Ex-cuse me.
EX-cuse me.
(Another burp) ‘Scuse me.
I give up. Whatever.
(Laughing) Yeah, yeah, yeah, whatever.

I am thrilled to chat with Sam about his burp. What does that say? It doesn’t matter. I just heard the toilet flush. God only knows where that conversation will take us.

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Friday, August 23, 2013

Happy Birthday to me

Today is my birthday. I had forgotten until my sister posted something wishing me a happy day this morning. I thought, “Oh. Here it is again. My how the summer flew by.”

I remembered back to the days when I waited so eagerly for this day: Back to the days when my birthday meant a real whipped cream cake with candles and singing. A time when I wasn’t allowed to see the cake until the candles were lit.  A time when I believed the simple action of blowing out candles could make my wishes come true. I remember the magnitude of taking that one big breath – as a year’s wishes hung precariously in the balance of my success - or, God forbid, failure.

The days of cakes and candles are long gone. Still I can’t help thinking what wishes I might make if a candle was to come my way.

A slice of D’Amico’s Bakery birthday cake to see if is as good as I remember it.

The familiar conversation with a man I know well:

Jin! It’s thy father. I think it is someone’s birthday today.
Really? Who?
I think I am talking to her - the middle one. 
You know, I chose today for my birthday because I am very diplomatic. It was my first act of diplomacy.
Well, your mother’s birthday is tomorrow.
And Papa Paldino's was yesterday. So I purposely chose the today so I was between them. I didn't pick sides.
(That easy, low laugh) Well, that was smart! You are my diplomatic one. So Jin. Where are we going to celebrate? Pick somewhere good. My stomach will be waiting...

A special lunch with my mother.

An afternoon shopping with Carol filled with her quick banter and laugh.

All of us: Johnny, Irene, Eddy and Carol, recounting the stories of our childhood together and hearing the inevitable laughter. And then be the one who doesn’t have to clean the table.

Those are wishes beyond the magic of any candle. Still it nice to dream, to remember. I am confident of more good birthdays ahead. Today is one. I am happy for the warm wishes from friends and family. I am thankful for the sunny day. I am fortunate to have Sam and Tony and yes, Mr. Dog as part of my life. 

And for the candle wish? That’s simple. Happiness for those I love.

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Thursday, August 22, 2013

The tragedy of it all

I met someone recently – actually it was more a “re-meeting.” I’d met him many years back while visiting his studio when Sam was a toddler. Back in the days when we were first becoming acquainted with autism. We spent a delightful hour viewing his paintings. I still remember his patient posture as he bent down to Sam, presenting him with an etching of a dragon that hangs in my home today.

I knew he didn’t remember us.  He smiled as I recounted our first meeting and our enjoyment of the day. He was pleased we paired him with a happy memory. He asked about Sam today. “Well, Sam still has autism. And he still enjoys art,” I said adding, “Art is a great outlet.”

His expression changed to concern. “You've had a hard life, then. Certainly raising a child with such challenges is a burden. I know the challenges I’ve faced raising my typical 14-year-old daughter. I can’t imagine how difficult it is.” He said these words carefully, with compassion.

Still, statements like that always catch me unprepared.

I paused before I responded. He was a well-meaning man. I wanted to respect his attempt to connect with our world.

“I think I am incredibly lucky,” I said. “Sam is my great joy. He is responsible for the smile on my face. Everyone faces challenges, don’t they? My real challenge lies in tomorrow.”

“Tomorrow? What is it about tomorrow?” he asked. “The same worries you might have,” I responded. “That he will be loved. That life will treat him well. That he will find happiness and feel secure – all that and more. Isn’t that what you hope for?” “Yes,” he acknowledged, “yes, it is.”

“Then we are not so different,” I said.  

I hope he understood there isn’t any sadness in my life; that we have known an abundance of laughter, happiness and love as has he. I have never wished for a different child. There have been good days and bad days and days that perplex us, sure. But we are content with who we are.

There is no tragedy here. 

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Wednesday, August 21, 2013

Yes, no, I love you.

Sam bends down and looks steadily into my eyes with a certain smirking smile I know so well. I know what’s next. It goes like this:

No, no, no, no, nooooo!
Yes, yes, yes, yes, yes!
No, no, no, no, nooooo!
Yes, yes, yes, yes, yes!
No, no, no, no, nooooo!
Yes, yes, yes, yes, yes!
No, no, no, no, nooooo!
Yes, yes, yes, yes, yes!

We have our established roles. Sam does the “no’s” and I have the “yeses.” I have no idea what we are “yesing” and “noing” about. If I could think back to the inaugural “yes/no” I might remember, but that memory is long lost. I only know this particular word volley ends in silly laughter. The reason really doesn’t matter.

So many of our conversations are this way: scripted in nature, reruns from other days. We pass it off as conversation; it connects us. We understand the rules of the exchange. There is no frustration with our scripted exchanges. We have established lines; we are generally satisfied with the conclusion. Who has the last word is unimportant.

It is through scripted exchanges Sam makes most of his needs known. I am happy we have this mode of communication. I know we are lucky.

We have other types of conversations. They are not nearly as fluent. They are far less frequent.

Sam occasionally comments about the weather or something in his immediate surround; “It is very rainy today.” or “The sky is blue.” When probed, Sam can choose words like “happy,” “sad,” “silly,” “anxious” and “afraid” to report on his emotional state. Sometimes he can even indicate when he feels unwell.

Novel conversations remain very challenging for Sam. It took years to finally master most “who, what and where” questions.

“Why” remains the elusive.

Sam is rarely able to explain a reason for a behavior, action or request unless it is an answer he has memorized and answered hundreds of times. The answer to most “why” questions remain locked in his head, far from my reach. Though I like to think I know him best, I am frequently stumped.

We bumble our way through those conversations as I try to crack the code to Sam’s world, trying to elicit the meaning of each word; carefully observing his facial expression to see if it matches the comment.

This is how it is most days.

And then, when I least expect it comes a rare magical moment when he speaks, unscripted, succinct and perfect in every way as he did last night before he drifted off to sleep:

Stay with Mommy.
Because... because… I love you.

I always enjoy the banter of our scripted exchanges; the comfort they provide Sam. I love their rhythm. They provide us a place to meet, to connect.

I pause in awe of the novel conversations, though. They are rare and beautiful. I mark those moments and bask in their lovely space, cherishing them as the most special of gifts.

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Friday, August 9, 2013


Today I read the words, “We choose hope.” Though I can’t say why the words made me pause.


It is such a beautiful word. It is that lovely illusion of what might be if the stars line up right; that world that could possibly exist if I cross my fingers and toes tightly enough. I thought about what I’ve hoped for over my lifetime. I’ve hoped endless hopes from trite to sublime. I don't remember a day I didn’t hope.

I started with a child’s hopes: for presents and toys and snow days from school. Then it was straighter hair, a new outfit, a day at the beach and, of course, the cute boyfriend du jour. Over time hope morphed to include a home, a family, a pretty garden and flowers, the luxury of a captivating book and maybe a good cup of coffee.

Hope never sat idle. One day I found myself hoping for cures and miracles, and progress and words, and a place to fit in. Some of those hopes became reality and some did not, and they fell outside the realm of possible. I never regretted the unrealized hopes. They served as the conduit that took me through the challenging days and shined a light forward. Hope propelled me into tomorrow.

And those hopes that fell by the wayside unfulfilled? Though their time has passed, I hold those particular hopes dear. They remain in a special place, saved for those who will come after us. 

So what of today? Yes, I choose hope. I will always choose hope. I can't imagine a future without hope. And so for now, I hope for Sam’s safety. I hope for his happiness. I hope he will understand when I am no longer here that I would never willingly leave him. I hope he will always know love. I hope one day he finds his place. I hope we all find our place. 

I hope.

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