Billy and Ricky playing hockey in the driveway
Karen:
We have always felt supported by our family and friends in the endeavor of raising Billy. There are times when I just feel the love coming at me, when no one says a thing. This happened once at church when I stood up and said something about how I was worried about what was going to happen to Billy (and Billy’s behavior, which was already pretty bad) when he went through puberty. After I spoke, I literally felt physical love and sympathy surrounding me and coming into my body, from the congregation. It was quite a moment. Neither my feelings nor the feelings of the people in the church that day can really be expressed in words. It is not just the pain that can’t be expressed, it is also the joy. These unspoken, but very real emotions, are hard to capture.
We have always felt supported by our family and friends in the endeavor of raising Billy. There are times when I just feel the love coming at me, when no one says a thing. This happened once at church when I stood up and said something about how I was worried about what was going to happen to Billy (and Billy’s behavior, which was already pretty bad) when he went through puberty. After I spoke, I literally felt physical love and sympathy surrounding me and coming into my body, from the congregation. It was quite a moment. Neither my feelings nor the feelings of the people in the church that day can really be expressed in words. It is not just the pain that can’t be expressed, it is also the joy. These unspoken, but very real emotions, are hard to capture.
Beyond Words
Our first, and often last resort
words so often come up short:
imperfect tools that scarce describe
what Billy means within our lives.
For instance: Raising him was tough,
but that word barely says enough.
There was struggle, repetition,
heartbreak, little recognition
from Billy that he understood
what to do (or ever would).
Yet still, I’d never hesitate
to say that he was doing great,
by which I meant, through deep despair,
there were times when Bill was there.
One small breakthrough that we would bless:
a moment of sublime progress.
(Did Billy sometimes then regress?
The answer I must say is Yes.)
In any case, no word or phrase
would answer, though I’d strive for ways
to hit that small bull’s-eye of truth
words make poor arrows (I’ve got proof).
Friends have this struggle too, I know
To say the right thing even though
There is no right thing; to convey
Nuances that no words display.
Autism’s like a birth or death,
There’s no word that describes the breadth
and depth of your experience,
no phrase that renders complete sense
of all the cards within your hand,
so everyone may understand.
Is it hard? Would some say tragic?
Yes to both. But there are magic
times when all the pieces fit,
when there is so much joy in it
(whatever it is, can’t be sure),
Yet, here again, no word’s so pure
or so complete as to express
all that I mean, and nothing less.
This fall, while on a church retreat,
around an autumn campfire’s heat,
they passed out books of classic songs,
so everyone could sing along.
Though grown up, Billy does not read,
but for these songs there was no need,
he knew the words, he’d known them cold,
since he was barely six years old.
There is nothing half as fine
as singing “Darling Clementine,”
our voices rising in the night,
our faces lit by fire light,
and Billy, our autistic son,
joyfully joining in the fun.
We all felt it. It made my year.
Yet though the memory’s strong and clear,
I find no words that can address
the whole truth of my happiness.
Billy cannot read this poem.
I wish he could, but in our home,
we don’t dwell on what can’t be.
It limits possibility.
