66: A Change in Plans
66: A Change in Plans
A Change in Plans
Tell me, what is it you plan to do with your one wild and precious life?
Winter had arrived in New York State. Outside, the chill in the air cut clear to the bone, and the fallen, neglected leaves across our lawn were now covered by a thin layer of snow.
Moving slowly after spending a sleepless night with our older son, I was thankful for the warmth of our house and the comfort of our large red sofa. Curled next to me was our younger son, home sick from school. He was not feeling so comfortable. Actually, he was feeling pretty crummy.
To distract him, I started a conversation about severe weather, his favorite thing in the world. I settled into the blankets and prepared for the endless stream of fact-sharing for which this child was known — barely a pause for a breath, just fact after fact after fact.
“So, what sort of work do you think you want to do when you get older?” I asked.
“I’m going to be a storm chaser,” he replied with a raspy voice. “Dad says I can start next year when I am ten.”
This was news to me. And, suddenly, instead of lying in wait for the merciless stream of weather information, I realized that we were actually starting to converse, albeit, about his upcoming plans… to chase storms… somewhere.
“Wait. You mean your dad is going with you?” I said, feeling more than a little rejected.
I didn’t make the cut for the imaginary trip to chase imaginary storms? I was hurt.
Fortunately for me, he sneezed me out of my moment of self-indulgence. My sick boy. I pulled a quilt around him in an effort to make him feel better. After all, it’s my job to make him feel better. That’s what I do. I’m mom. I’m the nurse, the scullery maid, the cook, laundress and caretaker of all things furry, slimy and swimming. I’m the drill sergeant, chauffeur, arbitrator and heavy hand.
In addition to all this, I’m also an autism mom.
Toilet training will perhaps be my lifetime job. And the mess in our bathrooms? Volcanic. I’m an advocate and a home schooler. Special diets, intestinal disorders, comorbid conditions — I’ve learned enough for a lifetime. Bowel movements. Did I imagine knowing, really, so very much about bowel movements? Really?
A mother of two children with autism, I have stopped amidst the chaos of the day and wondered: how did life bring me to this point?
“Where’s my employment contract?” I asked my husband one day. There was a time I had brainpower, you know. How had my life been reduced to this?
He just laughed it off. Only, truly, I wasn’t joking. I had plans for my life, after all. Yes, those plans did include children, but did they include special children? All the doctors? All the therapies? Frayed nerves? Diminished patience? Never, ever sleeping again?
That cold winter morning I sat next to my storm chaser on the sofa as he told me of his summer plans, knowing full well that he expected me to be where I always was — where I have always been during his lifetime: at home, keeping those home fires burning. In his mind, while he and his dad were out chasing the great F5 tornado, I was to be in my rightful place, taking care of our older son, the house, the pets and all that comes along with family living.
That’s what I do.
But, the truth was, I wouldn’t want to chase storms. First of all, I think you’d have to be a nut to chase storms. Our son was that kind of a nut. He loved storms. It was his passion.
My children are my passion.
It happened without my realizing, perhaps during one of the sleepless nights as I sat in my familiar spot at the top of the stairs in the hall, forcing our older son to stay in his room during the wee hours. Or, was it while cleaning the tenth, fiftieth or one hundredth toileting accident, knowing that it was a sign of a child just not able to control his body?
Was it the first time our tantruming child hit me, and I realized it was a cry for help and not an act of anger?
I’m hopeless. Somewhere along the very path that will surely drive me to insanity, I had found my life’s work and my purpose.
Leaning over my sick child’s head, I gave him a kiss. He had just taught me a lesson and didn’t know it.
“Yuck, Mama,” he said while wiping away any possible remnants of my affection. Too late. I knew I’d already made my mark.
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