| Chesney is
12 now and life has taken on some semblance of balance.
After years of misdiagnosis he has finally been
labeled with Asperger's Syndrome, it fits, I think.
We have the answer to some of the questions. I suppose
we will always try to fill that huge void of his
earlier years, all the doctors and testing and medications,
the bookcases in our home filled with medical texts.
Why was the hunt so difficult? I don't know. Maybe
it was because of our family history of bipolar
disorder or perhaps it was Chesney's hyperactivity
or anxiety. But in the here and now, we know the
truth.
The truth, the truth, all the heartache and sadness
and stress wrapped up in one word, Autism. Every
single moment of every single day is about autism,
the core from which our lives spring. It's the
daily struggle to get Chesney on the bus for school
and the elaborate plans we make so he will eat
lunch. MY afternoons spent waiting for the phone
to ring and to hear Chesney's teacher's voice
on the phone, this is autism. The support group
meetings and IEP's and social skills groups, this
is our life. This is who we are.
And who is this child I love? He is afraid of
black socks and loud noises and sleeps on the
floor. He loves the movie "Jaws" and
statistics and Yugioh cards. He is funny and warm
and yet disconnected at times. He has curly black
hair and big brown eyes through which he views
a different world. Not my world. He is unaware
of my world. To Chesney I am the provider of security,
the hand he holds and the one with whom he watches
football games in the dark. I am the one who does
not care that he cannot feel the temperature of
his bathwater and who does not yell when he throws
tantrums when the bacon is slightly underdone.
He is unaware of my broken dreams and the image
of motherhood that lies shattered at my feet.
He will never know how I long to hear him read
Keats, listen to Mozart, run through soft green
grass at night. Or go to a college party, a midnight
viewing of Rocky Horror, listen to the wind and
hear beauty.
I wonder what he will do in his life. Will he
marry, have children, a job? Will he be gentle
or rough, loving or apathetic? Just who will this
child be?
Love, I have discovered, is total and unconditional.
I love him in a way that frightens me. He is the
beating of heart and the oxygen in my blood. The
urge to heal him is overwhelming. I fight that
battle alone, through the soul.
"And there you are, saying we have the moon
so now the stars..."
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