I cried with a stranger today. It was
awesome. Jake, my son, has been diagnosed with PDD-NOS. Basically atypical
autism. He attends an Occupational Therapy "camp". Essentially it is
a group therapy session he attends one hour each Wednesday for eight weeks. He
is three years old. I am always tired.
Each week I wait
in the waiting room with an older Indian woman. Her son is seeing the Speech
Therapist. He is about 6 and appears to be lower functioning on the autism
spectrum. We have spoken several times in the waiting room while our sons
receive services, though we never discuss the needs and delays of our children.
This day, the US
Women's soccer team defeated France in the London Olympic game-opener. I spoke
of how I enjoyed the Olympics, especially since the Michael Phelps craze of the
previous games. I spoke about the difference four years makes. Four years prior
I was married and pregnant. Here I was now, pregnant and smack dab in the
middle of a divorce. Four years. Life can change so much.
She gave me a
pained smile. Her hair was frizzy and the dot between her eyes shifted as she
furrowed her brow. Four years ago, she said, she would have done it so
differently. Through a heavy accent she lost words I didn't need to hear, I
grasped her pain. I tasted it. I smelled it. The icy blood in her veins, the
echo of the scream "No!!!!" as you silently nod, and how, while you
want to put your hands up, close your eyes and yell "STOP IT!", you
blink, maybe even manage a vapid smile, and feel your soul die as your fears
are realized. There is something wrong with your child.
At this point, the
womans eyes fill up. As my throat begins to close, I manage to choke out a
pitiful "it's so hard". She nods. The tears slip out of her eyes.
"I cannot
help this. I will always wonder if this is all because of me. The
science, the studies, the do not matter. This is my child. I will always, in
some way, in my head, blame myself."
I do not correct
her. I know the studies. I know the science, the statistics. I know what I tell
the parents of children with special needs. I am a mother. Until I die, I will,
in some part, blame myself. It is illogical, irrational, but it is reality. No
matter how informed, how rational, there will always be the tiny
compartmentalized notion that Jakes delays and needs are all. my. fault.
As my eyes begin
to fill, the Indian woman dabs her own as she struggles to continue. She begins
to delve into my lease favorite (and perhaps most selfish) part of parenting a
child with special needs: the fears. Fearing judgement. The fear that no one
will see the wonderful, brilliant, soulful child beyond the ever-present
symptoms of his condition. The constant explaining "Forgive us, he has
this disorder." The terrifying "And what of him after I am
gone?" The pain of avoiding the few birthday parties to which he as
received invitations. The gripping fear that no one will give him the chances
he deserves.
These fears are
almost unfounded, yet there they are: hiding in the recesses of my brain, only
poking their heads out often enough to remind me that this will always be my
reality.
Usually I
can keep these hurtful and quite useless thoughts at bay. But today, in this
conversation, I can only relate.
I need her to keep
talking. I need to hear her pain, to see my own reflected back at me.
With all of the
support I have, the specialists, my co-workers, my family, my friends, I am,
with this women, finally understood. As is she. We are not embracing. We are
not saying "It will all be ok". We aren't pointing out the blaring
untruths in our fears. We are validating the challenge. These thoughts are not
all consuming. They don't hover like Charlie Brown-esque rain clouds. They are
shoved into the dark corners of our psyche, pushed away and held at bay by all
of the tasks and duties of life. But they are real. The pain in real,
the fear. Useless and stupid, absolutely. But present.
Except, of course,
in the joy. The fears, the pain for my child, keeps me awake at night.
Sleepless, I fret for my son. As he sleeps and dreams, I worry. When will he
have another meltdown? When will he lose it and I wont be able to help? Is
there anything anything ANYTHING more I can do for him? Knowing that my child
needs something, but not having a clue what that thing is, breaks my
heart.
To this the woman
nods.
I equate it to
watching a car crash in slow motion and being completely unable to do anything.
Just forced to watch the scene unfold.
Her visual is more
accurate.
She closes her
eyes and says that she can see when her son begins to become agitated. On good
days she is able to redirect. Most days, though, she says that she is in the
bottom of an hourglass, trying to stop the grains of sand from falling one at a
time. Before she knows it she is buried.
Then she says
something I have yet to acknowledge: at times I almost feel like I resent
him.
I know she is
speaking of her child. I know this because I feel the same. Shame has never
allowed me to say it but it is truth. At times I feel resentment toward my son.
My angel. My heart. This is her truth. This is mine. She exhales. Leans back. I
nod.
I usually cover my
face when I cry but now I sit staring at her. My jaw is locked. My face is
hard. She looks back at me. We have the same tired lines at our eyes. The same
weak but hopeful smile. She is late 40s, I am barely into my 30s. Her
tears are mine. Her pain is mine. Her fears are my own. We are the same.
The door opens. My
son, an incredibly high-functioning three year old with social and sensory integration
delays cheerfully bounds into the waiting room. We embrace. I speak with his OT
for an update. I turn to the Indian woman. She waves to Jake, smiling, eyes
bright. I know it has passed, our moment of honesty, the shared succumbing to
our thoughts. The brief lapse in strength. We are again composed, back
together. No different than before we began our discussion.
Well, maybe a
little different: stronger. Free. The kind of peace that only comes with
honesty. We love our sons. Would die for them. We fear for them. Love them.
Live for them. We are mothers.
As I smile at my
new friend, I am overwhelmed with love. For this woman, her strength. Love for
moments like this, profound epiphanies that change how I view myself and the
world. Love for my son, perfect just as he is. The raw and uncensored
encounter, all about pain and fear, has erased some pain, relieved some fear. I
offer a grateful smile. She nods, closes her eyes and leans her head back. I
know her moment is not over. But soon her son will be out and she won’t have
time to focus on her own feelings. And that is how she likes it. I know this
because she is me. I am she.
We will be ok.