It’s another
beautiful day in the Caribbean. A Cerulean
sky plays host to a lone, slow moving, puffy white cloud. Vibrantly,
green Watapana trees are dancing their branches in the breeze to the tune of a
yellow breasted Troupial singing sweetly outside my window. Golden sunbeams cast an iridescent sheen on
the bird’s blue-black wings and his eyes sparkle like Onyx when they catch the
light.
Nice paragraph, right? I like it.
Clearly, I enjoy my own words…waxing poetic, if you will. However, I don’t describe things to my son
like that. Not anymore, not for right
now. He’s 6 now, very smart for his age,
but still only 6, and we are going through something these days.
Gabriel has become very aware of his
blindness, and I find myself describing the world around him more casually to
him than at any other time in the past.
Sometimes, I completely glaze over the landscape and focus on the things
that are making noise, emitting an odor, or readily available for touching. The
things he can appreciate. Often these
days, I find myself trying to downplay the beauty of the world surrounding us,
to spare him from all that he’s missing.
Since
Gabriel was old enough to understand that the sounds coming out of my mouth
were words, I have told him that he is blind because his eyes are broken, because
he was born too soon. (This is also a
nice way to explain Retinopathy of Prematurity to someone who does not hold several
advanced medical degrees.) We got along
fine that way for a long time. I served as his
eyes, describing the world around us and that’s just the way it was.
And now….
Well, let me back up a
little.
It started with a kid in his class who wears
glasses. And then Gabriel’s Father
finally admitted that he is not as young as he used to be and decided to buy
himself a pair of reading glasses before his squint lines became
permanent. Little Dude and I had a conversation in the
beginning of the school year about eyes, their varying degrees of brokenness
and corrective lenses. It went like
this:
G: Hey,
Mom. There’s a kid in my class with
glasses.
Me: Oh,
yeah?
G: Yeah, they’re cool glasses. He has a strap in the back so they don’t fall
off. What are glasses for?
Me:
Well, you know how your eyes are completely broken? Some people’s eyes are just a little broken.
They can see but they can’t see well, so they use the glasses to help them see
the way they’re supposed to.
G: What do you mean, they don’t see well.
So, naturally, I launched into a lecture on various
eye ailments, including - but not limited to: Nearsightedness, Farsightedness, Stigmatisms,
Macular Degeneration and Lazy eyes. When
asked to define the word blurry, I may have digressed into telling an age inappropriate
story about the time(s) Mommy drank too many Lemon Drop shots. It happens.
G (Processing this information overload): So,
if I get glasses will my eyes be better?
Me (with that rock in my chestal area): No, baby.
Glasses are only for people who can still see a little. But you could get some sunglasses, those are
for everybody.
G: Ok,
cool. I had a hotdog for lunch today.
I got him a pair of sunglasses and he looked
super cute in them. Gabriel was thrilled
and proudly wore them every day. Happy he was happy, I was also secretly
pleased. Since Gabriel’s eye transplant his eye leaks fluid which hardens into
a yellow crust and rims his eye. It
looks pretty gross, and he’s too little to be on top of keeping it clean while
he’s at school. His new Bono-esque shades hid the ‘crusties’ fabulously. I patted myself on the back. Another hurdle cleared on the path toward
raising a happy, well adjusted, non-sighted child.
Un-huh.
Four months later:
The pair of sunglasses I bought Gabriel broke. I fixed them with swear words, crazy glue,
tiny bits of my own flesh, and a nail file. They looked awesome. Alas, they did not feel the same, and
therefore were deemed unacceptable. Gabriel
decided he wanted reading glasses like his Father has, and his Father bought
him a pair. I didn’t really support this
decision, nor did I fight it. Now, I
wish I had.
My first issue was purely aesthetic. The
glasses are cute on him, but they magnify those crusties instead of covering
them up. As it were, I called myself a
shallow b*tch and kept my comments to myself.
My second issue with the glasses came to light, just recently and has me
much more concerned.
A few Tuesdays ago we were running late for
school, and Gabriel forgot his glasses.
When he realized it he freaked out a little. I asked him why he said, “Now, I won’t be able
to see.” The kid was so distraught, it
went beyond the normal ‘opps, we forgot something at home.’ I’ve seen him less upset after running top
speed into a wall (it happens about as much as you’d think). I didn’t go back and get him the glasses, but
I assured him that he’d be fine without them for one day. He tearfully assured me that he’d try his
best even though he was blind again. Recently reblinded, he didn't see me smack myself in the head.
Since that fateful Tuesday, we have argued
many times about his level of sight.
While I maintain that there is none, Gabriel insists that while
bespectacled, he can see. Ironically, when
asked to describe his surroundings or my attire or his shoes while wearing the
glasses, he actually guesses less accurately than with his naked eyes.
Last night we had a bit of special time. We ate dinner in the bedroom while listening
to 'Willie Wonka and the Chocolate Factory' and then after his shower I rubbed
his little feet for him and we talked about life for a while. I lead the conversation, gently, in the
direction I wanted it to go. Something like
this:
Me: It’s
a shame those sunglasses broke, they were so cute on you. Maybe this weekend we can see about getting
you another pair like those and you can wear them to school.
G: But
those are sunglasses, I need reading glasses.
Me:
Gabriel, you are blind. You don’t
need any glasses. You like them, and
that’s cool, but you don’t need them.
G: Yes, I do.
Me: For what?
G: So I can see.
Me: You’re blind. Totally blind.
G: No, I’m not.
Me: So which eye can you see out of.
G (tapping on his prosthetic lens): This one.
Me: That is plastic.
G: Ok, the other one then.
Me: Ok, can you see this light I’m shining in
your eye right now?
G: Yes. It's very bright and beautiful.
Me: Aha, Gotcha. Baby, there is no light. You can’t see. No kind of glasses in the world are ever
going to help you see. Yours will be a world
filled with so much, but you won’t ever see it.
My boy was silent for a few moments, which
was a blessing. The small statement
above cost me more to say than I need to admit.
Finally, Gabriel said: but Mommy, I can see…with
my fingers. *
I took a moment and collected my somewhat
blurry thoughts. Eventually I replied
that while he can in fact 'check out' many things in the world with his hands,
that does not change the fact that he can not see with his eyes. He agreed with me, a little too quickly, and
wanted extra snuggles. This morning he
insisted on wearing his glasses.
I’m pretty sure that I’m having one of those
moments in Parenthood where I’m completely stressing about something that will
work itself out in time. I know he knows
he can’t see, and I’m beginning to suspect that this is a manifestation of the
realization of how much he’s missing out. It’s the wishful thinking of an imaginative child. The only thing I can do is keep it in check
(with love), remind him of reality (when need be) and not let him know how
often I wish he could see what I’m seeing (just about every moment that I’m not
looking at roadkill, scary bugs or Clowns^).
This is the first time I write of a problem
that hasn’t yet been resolved. I've got a game plan, though. I’ve
starting a campaign of distraction. I’ve
started teaching him to cook (one of my passions) and am working on making a
few board games blind friendly.+ I’ve
also been keeping a journal of the things I see that I’d love to tell him
about. For right now, I'd rather skim over the surface of all the things he's missing but maybe in the years to come, when
my Little Dude is a well adjusted, blind Big Dude, we’ll read my journal and
laugh about the time he freaked out because he forgot his glasses.
*This is something that blind children hear a
lot. “You’ve got 10 little eyes on the
ends of your fingers!” That statement
is a joke. It pissed me off even before I had a child and it pisses me off even
more now. I can’t even think of another condition to
make a comparison to that wouldn’t wildly be offensive to someone I have no wish
to offend. I’m sure that somewhere along
the line, someone thought that would be a nice way to make blind children feel
normal (or some crap like that) but guess what?? They aren’t.
My kid is not normal. He’s
blind. Since most people in the world
are not blind, that makes my child abnormal, by the very definition of the word.
I also don’t believe in, “Thank you for
Participating” trophies. Eckkk…don’t get
me started.
^ Clowns are terrifying. Period.
+There are great tips for game modification at
Wonderbaby.org
