While I adore every
single reader (yes, especially you!) the members of my target audience are the
parents of blind children. In a perfect
would, they would find my blog within twenty minute or so of diagnosis. They’d go directly from the eye specialists
office with the newly placed weight of the world on their shoulders, to an
internet capable device, Google ‘my kid is blind!’, find our story and have a
good laugh about poop. This laugh will initially
surprise them, because for a moment they thought maybe they’d never laugh
again. Then they might feel terrible,
because how could they be laughing on the breast of such tragic news. Then maybe… they’ll think about life going
on. Because it does.
I try to design my stories to comfort, to amuse and to
inspire because I have been where these parents are and it is a dark place,
filled with fear and despair. The stages
of grief come, en mass, and you literally don’t know what to feel. The moment you find out that your kid has a
serious disability you experience temporary insanity. A good Lawyer could get you out of most noncapital
offenses at this time…because I’m serious.
You become a little deranged.
Crazy thoughts race through your brain, half formed waves of
icy terror that cause you to pull your hair and clench your teeth:
“Oh, the Humanity!! My kid is fucked up!! My baby, why, oh
why?? How?? What can I do?? What am I going
to do?? OMG!! SHOES!!! How is
he ever going to find his shoes?????”
These lovely musings are instantly chased by white hot licks
of guilt and shame that pierce your heart:
“Did I do something to cause this? Did I mess my stuff up
that time I tried those funky mushrooms in college?? Am I
being punished because I was a terrible person in a past life? How could this happen to MY kid?? My perfect
baby isn’t perfect!! And how the hell
will he ever find his shoes?!?”
A glance at your
sleeping baby, unaware (as of yet) of the long road that waits to be traversed
in the dark, can bring you to your knees with sorrow. But then you have to get right back up again
because even though your whole world has just fallen apart you still have a
child to care for.
That first day is the worst because you are clueless. Unless you’ve know a blind person (and they
are rare as diamonds) you only know what you’ve heard and assumed about
sightless life. You read ‘What to Expect
when you’re Expecting’ but you didn’t expect this and now you have no idea what
to expect at all.
That’s why I started this blog. To help you see, through my eyes, what’s to come.
I’ve told you how I dealt with it. I educated myself, I found him role models, I
created a safe home for him filled with wonders he didn’t need to see. I encouraged, cajoled and teased him to
blindly take his first steps, walk up the jungle gym – counting the
stairs. I read to him, sang to him and
loved him. I walked the fine line
between catering to him and teaching to live in a world that doesn’t cater to
him at all. I tell him honestly that he’s really fucked up.
Ok, calm down! I kid,
I kid…
I don’t say THAT…but he knows his eyes are broken. He knows
he’s different. He knows however well he
does on the MCATS; he’s not getting into Med school. He knows I think he’s very brave, but not special
because of his disability. He’s special
because of the facets of his personality, his spirit, his joy for life, his
budding comic timing and a thousand other reasons that have nothing at all to
do with his eyes.
I told his tale the way I did, as I thought of things that
happened in the past with one main goal in mind. I wanted to say it’s going to be ok.
The new parents might not believe me at first. The place they are in is as dark as the smoke
filled hallway in a burning house and twice as disorienting. My simple ‘it’s going to be ok’ might reach
them but it cannot penetrate the darkness. Only a little time can do that, time for the
smoke to dissipate and the air to clear.
They won’t really listen to me until they learn to believe again. Made their peace. My faith in destiny got me to a peaceful
place rather quickly, but others take longer.
Gabriel’s Father didn’t get to the peaceful place until Gabriel took him
there with his ability to shine in the dark.
Though your child won’t see, you will. You’ll see your child
grow. You’ll be amazed, charmed and
proud. As proud as every parent is
watching their child’s first steps, you’ll be even prouder because you know as
much as it was your baby walking; it was you that got him to that point.
In the beginning the uncertainty is all consuming. I know that well. I also know that it
fades. It doesn’t disappear…it never
will. You will carry some of that first day
with you, for the rest of your life. It is your burden. Yours alone. But more than a burden, it is a gift. A gift you got because you are strong
enough. You will raise that burden high
above your child, so it doesn’t touch them. Because they have enough.
And one day, so gradually..so slowly that you don’t even
notice it, you realize that burden is not so burdensome anymore. It’s a small thing now, only heavy enough to
remind you how much better things are than you thought they’d be. It’s not even a burden anymore, it’s become a
badge. A badge of honor, because you took that first day, when your whole world
was on fire and you turned it around.
Like a phoenix, you were reborn as the parent of a special needs child.
Like me.
An aside for my cherished fans (still you!):
Gabriel's glasses broke. He
got upset. I refused to replace them. He
got more upset. I played Mah-num-a-num
on my phone. We sang. We snuggled. We
ate a cookie. Sang again. It was over.
I
worried obsessively for almost two months. Mah-num-a-num.
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