My little Dude, the boy who was never supposed to be born,
the baby that almost didn’t make it through his first night in this world, is a
little over seven years old now. 2,624
days after his birth and I’m struck by how much I’ve learned from him.
I’ve learned about being a Mother. I’ve learned about
raising a blind child. I’ve learned to compartmentalize like a Mofo. I’ve
learned to make my peace with the things that I can’t change, and to work
really hard at changing the things that I can. As a result of all I’ve learned, I’ve gotten
closer to being the person I always wanted to be. I try really hard because I want my son to grow up being proud to have a Mom like me.
Long ago, I desperately wished for a cure for his eyes. I stopped the day I realized
that wishing for something futile uses energy that could be better spent on
raising a kid who can deal with the hand that life has dealt him..
I decided that the best way to go about this was by refusing to treat him
like a blind person.
I’m incredibly lucky because I have a singularly disabled
child.* I can phase out Gabriel’s blindness to the point that I recently asked
him to hand me a green towel and then we had a good laugh about how I sometimes
forget he’s blind. I’m not in denial, it’s
just that I’ve accepted it to the point that it no longer matters.
I do, however, have a set of worries about my son’s future. The stress of that would drag me down if I let it.
Worrying wastes even more energy than wishing and the only
way I can go on treating my kid like he’s not blind is by keeping my focus on
him and not the daunting prospect of his unseen future. So I’ve developed a
system of keeping my worries out of my daily life.
You see, I keep them in a picnic basket. I put the basket in a box, which I wrap in
saran wrap, douse with water and store in the deep freezer under my secret
stash of Ben & Jerry’s Cherry Garcia frozen yogurt and my emergency bottle
of Jack Dainels. And there they
stay. All my little pointless worries,
tucked far away where they can’t creep up on me during play time.
However, there are times (usually in the small hours of the
morning) I find myself completely compelled to check out the contents of my worry
basket.
In the event that I’m not distracted by Ben, Jerry or Jack….
if I make it through the many layers of frozen saran wrap…. if I am not deterred
by the DANGER stickers and ignore the handwritten note that says, ‘Don’t open
me ever, Dumbass!.... I am free open the box, take out the basket and release
my worries.
It usually goes something like this:
What if we were in a Zombie Apocalypse situation and it
started while Gabriel was at school.
Would someone help him? Would he
have a chance at holding him off with his white stick until help arrived. Should I have him in a Karate class? Would they accept him as a student in Karate
class? Is Jujitsu better suited for
fighting zombies? What’s the difference
between those two things…and Kung Fo is something completely different, isn’t it? I’m almost 40…why don’t I know this stuff by
now?
What if he has a guide dog one day and it gets scratched by
a bat and becomes rabid, like Cujo.
Would he notice that the dog was abnormally thirsty and take it to the
vet or would he miss the symptoms completely and be ripped to shreds by his canine
companion? They always seem to use big
dogs for Guide work…a rabid, big dog could do much more damage than a rabid,
small dog. Do they train miniature poodles
to be Seeing Eye dogs? Not much threat
there…he could just kick a rabid poodle dog away or stuff it in a pocketbook and call animal control…..
What if he has no friends and can’t find the bus stop? What if has no job and doesn’t need to take
the bus anywhere? What if he’s extreme
rock climbing (alone because he has no friends but that’s where he took the bus)
and his little hitchey-thingie is faulty but he doesn’t see it because he can’t
see?!?
Most of the worries that wash over me, stream of consciousness
style, are completely ridiculous. They
are one last attempt to keep myself from the tiny jewels at the bottom of the
basket. My genuine, legitimate life
concerns.
What if he is in an emergency situation in a building one
day and can’t find a way out? He bumps
his head all the time, is that why he had a headache the other day or was it
just a headache? His sleeping problems…is
that just because he’s just bad at sleeping like me or does he have Non 24^?
What if he gets bitter when he’s older because he really wants to drive a
car? Will they let blind people drive
Google cars alone??
This can go on and on. I shouldn’t brag…. but I could be a champion worrier. If they ever
have a Special Emotional Olympics I could possibly be a contender for the Gold in fretting.
The biggest problem with worrying is that there are so seldom
easy answers. Most of the things I agonize
over will probably never be a problem outside my own head and in the past, the
biggest challenges I faced were ones I never saw coming. I should never open that basket but sometimes I can't seem to help myself and occasionally I do head off
some problems by giving them forethought.
When he’s older I’ll be sure to tell him to ask someone help him locate the
emergency exits when he goes to a new place for the first time. I spoke with his Doctor, and as long as he’s
not concussed a head bump is just a head bump.
I still have no clue about the root of his sleeping issues, but I’m
pretty sure I’m just going to start drugging him. As for the Google car, well
there might be driverless hover cars when he is old enought to drive or maybe in the post
Zombie apocalypse we’ll all be riding donkeys.
When I’ve obsessed enough about ridiculous things and muddled
through some real stuff I put my worries back into the basket, rewrap it and
stick it back in the deep freeze. I don’t
ever bring them out when Gabriel is around me because they are my worries, mine
alone. If I start carrying them around
with me they will weigh me down or worse, spill out onto him.
He has his own worries in his little basket….how can he weasel
out of doing his reading homework and play video games, mostly.
Little Dude was assessed a few weeks ago for his ability to socialize. Socialization can be a struggle for blind kids. In some cases they can feel isolated, lack compassion and be generally antisocial. Not mine. He's already a little party animal. The conclusion is that he is
very well adjusted for any child, but especially for a blind one. This confirms something that I’ve long
suspected: My struggle to keep
my worries in check has allowed him to grow into a little boy who happens to be blind instead of a blind kid Treating him like he's perfectly normal has given him both the confidence and the spirit to be well...pretty much normal, despite his abnormal eyes.
* Many of the blind children out there are blinded as a
secondary complication to other seriously debilitating health problems. The parents of these kids don’t have the
luxury of make-believing that nothing is wrong.
There’s a chance that they can’t even crack jokes for it because the rigorous
schedule of taking care of a multiply disabled child does not allow for a lot
of joke cracking time. They are too busy
fighting with the insurance company, or having the wheelchair ramp in the van
fixed. Their child’s health problems are
of the ‘in your face’ variety and they can never escape them.
^ Non24 is a sleep disorder that affects blind people
because seeing the sunlight plays a role in helping to the body’s ability to
regulate it’s Circadian Rhythms.
