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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Seizures and dog biscuits

Sam had a seizure Sunday. He stood at the top of a flight of stairs and stumbled as the seizure began. Fortunately our quick-witted puppy, Mr. Dog, saw him standing precariously and sounded an alert with a loud bark. I was by Sam’s side within a second.

I held Sam safe until the seizure stopped and then carefully sat him down on the stairs, holding him until I was certain he was OK. Certain that he was stable. Mr. Dog stood at attention behind Sam, waiting I am guessing, for the very same assurance.

As the seizure waned, Sam looked at me blankly, unsure of what was going on. He announced his tongue hurt, shook off his confusion and went about the remainder of his day, seemingly unscathed. Crisis averted, Mr. Dog wandered off to resume his nap. Everyone was fine it seemed. Except me.

I couldn’t wipe the “what might have happened” image from my mind. I needed something to refocus. With that in mind, I called Sam to make dog biscuits for Mr. Dog as a reward him for watching Sam so carefully. I hoped the busy work would be distracting. Still, I couldn’t turn my mind off. I kept envisioning what might have happened.

As we worked, I looked over at Sam. He was by my side mixing ingredients, helping me roll the dough then methodically cutting the biscuits into bone shapes. He sang happily as he placed them neatly on the pan. I admired his serenity as he approached the task at hand.

That is how it is with Sam. He lives mostly in the immediate. What is past is past. The future is the future. His places his attention squarely on what surrounds him. He compelled me to join him in the present; drawing my attention to a happy moment I would have otherwise missed. He provided the grace note to get me through the difficult thoughts.

I looked around again. Calm permeated the room. Sam was safe. A phone call to the doctor would be made on Monday morning. The biscuits were in the oven. Mr. Dog was sniffing something good in the air. We were lucky today. Lucky indeed.     


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Patience

Patience.

We start.

Methodical.

Consistent.

Patient.

Seemingly standing still.

Present the information.

Over and over.
Again and again.

Ask the question again.

And again.

Try, try again.

Not quite.

Why didn’t he understand?

He wasn’t ready.

Another day it will happen.
Maybe tomorrow.
Try again.

Today was the day.

He understood today.

It just finally clicked.

Why today?

He was ready.

He was finally just ready.

All the pieces came together.

The pieces fit like a puzzle

It clicked.

It snapped into place.

He got it.

Victory at last.

A small cheer.

We move forward.

We move on.

Another concept.

More to learn.

We begin again.

Patience. 


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The inexcusable

She was sick. I get that. She was probably tired. Afraid. Maybe alone. I get all that, too. 

Another child with autism has died at the hands of their mother. Once again the media has rallied to the defense. Once again the blame has been placed on the difficult nature of the child. There was no mention of the grievous loss of a life that ended too soon; of what might have been.

I have been struggling to find the right words to respond only to find there are no exact right words. Remove the "autism" and this act would be decried as senseless, inexcusable and tragic. There would be universal outrage. But because this child was diagnosed with autism, I am to believe her actions are understandable. That this child's life was unworthy of living.

Each time the media reports this way, they devalue the life every disabled child. They devalue my child. Each time the media spins the story suggesting an act of violence against a “difficult” child is acceptable; we are placed in the position of defending why we, as adults, have no right to harm any child.

Her life was hard, they said. The child was difficult.

I haven't lived this woman's life. I am not judging her mental health. I have lived a version of her life, though. I have lived through behaviors that are beyond challenging; I understand the kind of care that consumes a life. I understand despair. I understand fear. I understand endless sleepless nights. I understand exhaustion. I understand feeling alone. I understand. That a mother was of the belief she had no other choice is heartbreaking. 

There are options other than taking a life. The media needs to understand this.

I object to the notation it is somehow excusable to harm a child out of frustration, exhaustion or lack of resources when that child has autism. I object to the notion that certain children are less worthy of protection. A child’s most challenging times are cries for help. You do not answer that cry by taking their life.

And to my Sam I say: I signed up for this. You didn’t ask to be born. Like those vows I took in marriage, for better or worse in sickness and health, you are my child. We are bound together for life. It is my sacred oath, my privilege to keep you safe. You are my heart. 

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