recently returned to work so I am again busily involved
in managing schedules so childcare and school and work all exist
in a perfect harmony. Organization and order have usually been my
strong points. I loved doing puzzles when I was a kid and the sense
of relief and accomplishment that came with fitting the last piece
of the puzzle in its place was worth all the effort and time that
came before. Before I had children, I assumed they would be like
puzzles. I would put the effort and work in and by the time I sent
them away to college, the last piece would be carefully and lovingly
put in its place. They would be complete and whole and ready to
conquer the world. And I would have succeeded.
Like most parents, I
had a script; hopes and expectations for both of my sons. Zachary
is incredibly smart. He is in a gifted school program and is an
avid and talented chess player. He loves to read and has a wonderful
sense of humor. I read every article and did all the things I thought
a parent was supposed to do to nurture and support his development.
I have even taken a bit of credit for his achievements and allowed
myself to indulge in pride. I, of course, did the same for Sam.
We own every Baby Einstein DVD and I even had a whacko bassinet
that pumped in the sound of a heart beat and electronically rocked
at precise intervals when he was an infant. But Sam has taught me
an enormous amount. He can't follow my script. The pieces don't
quite fit. I had to either abandon my pre-fab hopes and expectations
for him or change them. I have decided to do the only thing I authentically
can do and follow his script.
Each day begins a new
chapter that ends with a new cliffhanger. We are writing it as we
go along. His developmental delays are our outline but he fills
in the rest. I do things differently with Sam. I have to. I follow
his lead and he leads me into the unknown most of the time. And
often times I must remind myself that the story of Sam's life that
I had written before there even was a Sam separate in body from
me is actually fiction. It was not the story that was meant to be.
Sam actually is a puzzle.
He has many diagnoses so therefore in my mind, he has none. He has
been labeled as being Autistic; having Pervasive Developmental Disorder,
a Speech and Language Delay, a Communication Disorder -- and there
are more but that's all I can remember for now. I have labeled him
"Sam" and the rest remains a mystery. I have tried to
embrace Sam in his uniqueness yet I still struggle with a sense
of sadness and fear and grief that I allow myself to occasionally
indulge. But it's been like building up muscles I never realized
Sam makes me work. I
have to think outside the box. There are no parent guides to direct
us. and though that frightened me immensely at first, it is actually
now an awesome relief. I was never very good at following other
people's advice, though I often sought it out because I was afraid
to trust my own instincts. Now instinct is all I've got and it is
a pretty powerful thing.
Sam makes me face my
fears and come up with new solutions. I must travel streets and
roads without a map. Sam takes me to places where no roads exist
so we build them together. We are charting our own way; composing
our own story. And he has made me stronger. Because other disappointments
and challenges can't compare and I have finally learned what reality
is. My fear has become far less powerful because I have come to
realize it offers me nothing. Bravery, they say, is doing it, whatever
it is, despite being afraid. And we are doing it. In our own weird,
awkward way. Some days I try to bring Sam out of what appears to
be his own little world into the "real world". But I visit
his world, too, and I have realized there is no one answer, no one
Recently I kissed Sam
good-bye as I saw him off at his school bus. "Good-bye Sam.
Have a great day."
"The name is Sammy
"I am sorry. Have
a great day at school Sammy Whammy."
"It's okay Mom.
It will be alright."
And he turned and took
his seat on the bus and smiled the most exaggerated smile through
the window as the bus pulled away.
And there went Sammy
Whammy. And the journey continues. And it will all be alright.
I have learned much about
myself as well. I have learned that I can be dealt some unexpected,
scary stuff and be able to deal with it. I didn't always think I
could. I used to feel I had to keep myself safe. I believed I wouldn't
be capable of dealing with truly difficult situations. But now I
think I can because I have to. I may not be great at it but I get
by. And I guess that is all I can hope for. One page at a time.
mmo : december