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Sometimes I stop during the crazy tumble of days
and pause to wonder if my lifelong obsession with
normal lives is a coincidence.
Maybe I longed for the order the word "normal"
implies because I've always possessed a strange
habit of diving into life backwards.
Here's an example-I conceived my first child,
married, divorced and then decided I wanted to
go back to school-in that order.
I blame the reverse order direction of my early
adulthood on being very young-so young that my
first run out of the gate didn't embitter me.
I had every intention of getting this normal concept
right. It took a while to find the nerve to enter
round two, but eventually my biological clock
detonated and I ran head first into my future:
Mr. Normal. In six months time we courted and
married. I quit my middle-management job and settled
into a nice, understated home in the suburbs.
By the year's end, we'd added another perfect
daughter to the lovely teenaged girl I brought
into our marriage. With our procreation completed,
we settled into my carefully wrought version of
a normal life.
This vision of mine included some pretty time
consuming trappings like homemade bread and gourmet
meals concocted from rare ingredients such as
portabella mushrooms. I'm sure my husband enjoyed
my culinary efforts, but to be honest, I was bored
out of my gourd. But hey, I got what I asked for-storybook
normal, right down to the big black dog that fancied
himself a lap-hound.
Over the course of twenty months my ovaries rebelled
against my carefully drawn lines and presented
us with some unplanned, but certainly not unwanted
additions to our family: two baby boys!
The ink was barely dry on the birth certificates
when I began planning my sons' futures. David
would be brilliantly gifted and athletic. Perhaps
he'd spend a brief stint in his father's footsteps
as a Navy SEAL, then move on to his run for the
Presidency.
When news of Jamie's arrival hit home, I assigned
him with the serious-minded pursuits of a Nobel
Prize in literature followed by a Pulitzer or
two. I dreamed normal dreams for normal boys.
Cut and fade a few years into the future. Come
and visit me and I'll show you what's normal for
us these days.
While Mr. Normal works overseas to pay our ever-mounting
bills, the kids and I spend our days here, in
our home on a Dogwood lined cul-de-sac that I
love because it has the most precious white gazebo
in its center.
Our house is unremarkable in its utter middle
America-ness-an aging four-bedroom rancher boasting
a huge fenced backyard.
As I invite you inside, I silently hope that you
aren't the nosey type who will look into my fridge.
Because if you do you'll see that the only bread
in this kitchen is store bought. A closer inspection
will reveal that closest thing I've seen to a
portabella mushroom lately is the unspecified
green stuff growing under the veggie drawer.
I try to distract you from the fridge by inviting
you into the dining room.
"Oh!" You exclaim. You are beginning
to see that something is amiss. There is no table
in our dining room. Instead, you see towering
metal frames, pulleys and contraptions that bring
to mind a medieval torture chamber. As the fear
dawns on your face that maybe something perverse
goes on here, I inform you that this is our occupational
therapy room.
You ask me-"is someone here ill?"
"No, we're all perfectly healthy."
You shake your head in confusion, and cross what
remains of my dining room to look out at what
used to be a screened in back porch-a Carolina
room, we're fond of calling them down south. But
you don't see the white wicker chaises or the
sweetheart roses climbing pristine gingerbread
trellises you expected.
What you do see is a scene lifted from a preschool-a
room full with a child's version of a king's ransom:
toys, books, games and puzzles. You also see my
son David, the most precious blue-eyed boy in
the world, hard at work with his teacher.
"Oh," you say, "you home-school
your kids?"
"Well, yes and no. They go to school, but
they also get several hours of one on one teaching
after school and on weekends."
I notice a shadow of disgust in your expression;
the moment where you think perhaps a call to social
services is in order.
I have mercy on both of us and spill the beans.
"The good news is I'm no longer bored out
of my gourd. The bad news is that normal has escaped
me again. Both of our wonderful, perfect and celebrated
little boys were diagnosed with autism within
a year of each other."
I force down the lump in my throat and struggle
to tell you that at the time, I wondered if it
death would have offered my boys a kinder fate.
This is not a pretty revelation, and in uttering
it, I am consumed with the need to redeem myself.
"You see, I manage two full time therapy
programs designed to teach my kids things that
other children learn normally-like waving goodbye,
blowing kisses, how to do puzzles
"
You look horrified.
I lead you down the hallway to our guestroom and
open the door. My son Jamie looks up from the
table where he and his teacher practice social
skills. My boy smiles the brightest of smiles
and says, "Hi, I'm Jamie. How are you?"
You sigh with relief, and say what everyone who
meets Jamie these days says: "he doesn't
look autistic to me. He's so cute!"
"Yes," I say, "but you didn't know
him three years and four-thousand therapy hours
ago. See that scar in the middle of his forehead?"
You see it, because everyone does. You nod and
look concerned.
"Jamie got that by slamming his head into
the corner of a doorway-on purpose. Hurting himself
and others is pretty much all he did before we
started this program. Now we have days where we
forget he's autistic."
"And David?" you ask.
"David is doing better than we ever dreamed
possible. He is still undeniably autistic. He
talks with pictures, he loves the outdoors, and
he is the happiest child I know. He will have
a good life."
I see the pity in your eyes.
I ask you not to feel sorry for my children or
myself. We are fine. We are happy.
But you ask anyway-everyone asks-"how do
you do this?"
I answer you the same way I've answered everyone
who has asked before you-I do it because I am
a mother.
We are lucky. Every day David and Jamie's lives
become a bit more removed from the tortured children
a doctor once told me to consider institutionalizing.
With this coming realized, both of my beautiful
daughters are free to have more of my time and
attention.
Even if my sons never make another lick of progress,
I am through with mourning. In discovering the
capabilities of the children I have, I buried
the dream babies I expected.
Finally, you ask me-everyone who knows me eventually
does-"don't you ever want a normal life?"
It is here that I whip out my Webster's dictionary
and read you the definition of normal: conforming
to a usual or typical pattern.
This is our normal. I wouldn't trade my usual
or typical pattern for all the gourmet dinners
in the world.
Before you think it appropriate to canonize me
a Saint, let me tell you that the ship that carried
us on this journey floated on a storm tossed sea
of tears. The route our family took to resurrect
normal probably sits somewhere due west of the
route you would have chosen. It took us a while
to get here.
If you should ever come to walk in my shoes, I
will hold your hand and cry with you. Then I will
tell you the only thing I know is true: when the
shock wears off, you will rewrite your version
of normal every day. Over time, a new pattern
will reset the balance of your upended world.
Now comes the good part, so listen carefully.
When all of this happens, a new kind of happiness
will come and sustain you through those inevitable
moments where you long for something so simple
as a gourmet dinner.
About the Author:
Liane Gentry Skye is one of the pennames of
an intensely private stay at home mother to four
perfect children, two of which happen to have
autism. Liane gave up sleeping a few years ago
in exchange for the clandestine pursuit of the
writer's life. "Due West of Normal"
serves as the forward in her first book, "The
Book of Hope: Snapshots from an Autistic Child's
Journey with Visual Communications", to be
released later this year. She is currently working
on another book: "The Color of Love: Living
Proof that Autism is not a Curse."
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