Vision

I have three black floaters in my left eye, the only tangible reminders of the four and a half months spent on bedrest during my pregnancy with Everybody’s Boy.

They pop in and out of my line of sight.  On days that I am more aware I see them everywhere.  I perseverate on my impending blindness.  I look at the sky.  The wall.  How many are there now?

Three.

There are always three.

Are they bigger?  Are they blacker?  Are they more in the center of my line of vision than before?

I google “preeclampsia, black spots, five years postpartum” in various combinations.  Incessantly.

Days, even weeks, go by where I don’t notice the spots.

Sometimes I convince myself that they are imagined.

Except I remember that first time I knew something wasn’t right.  I was at labor and delivery being monitored for the millionth time after a blood pressure spike. I remember seeing all black and feeling as if I may pass out, and then my vision slowly returning as I lay horizontal in the hospital bed.

I remember telling the nurse that my vision had gone for a minute but that it had come back except for a few little spots in my left eye.  I remember her telling me not to worry, that this was a normal part of pregnancy.

I remember fixating on those black spots for the next week, asking Gus if he could see them too.  Comparing every vision I had with his, requiring detailed descriptions of how he viewed the world – mentally overlaying his imaging with my own.

I remember a flurry of panic a week later when I casually mentioned the spots to my perinatologist.  The amniocentesis.  The emergency appointment with the ophthalmologist for a consult on whether or not my vision could withstand natural childbirth.  The induction.  The month and a half of utter hysteria that followed as my blood pressure continued to rise postpartum as my vision deteriorated; taking my newborn child with me to the neurologist and the ophthalmologist and the MRI clinic.  Fighting closing my eyes for sleep for fear that the flashes of light in my line of vision might *this time* be a retinal detachment.

And then, as suddenly as it began, it got better.  So much better that three years later I was shocked when in a routine eye exam the ophthalmologist asked me if I had any vision loss in my left eye.  When I recounted the history he remarked that he could see the damaged area.

It was this almost serendipitous affirmation that I was not crazy.  That something scary did happen to me and that someone, a professional even, noticed it without even the slightest bit of my prompting.

That affirmation thing is big with me.  I have a way of doubting fact.  A really troubling way of over-analyzing ad nauseam even the most concrete information.

I constantly struggle to understand Peter’s Autism.  In this case my blind spot is doubt.  Because I remember the day I heard the diagnosis.  I remember the bleak comradarie I felt when I learned there was a community of people like us.    I remember the certainty I felt that this was where we belonged.

I stare at the wall.  I stare at the “blind spots”.  The missing pieces in my vision and my perception of what Autism means for our child.  Once again I ask Gus, my family, my friends, the professionals if they see the same thing I do.  I try to overlay the images in my mind and reconcile something tangible.

 

Something universal.

Yet what I desire, what I crave, is that horrifically serendipitous affirmation by someone completely foreign to our world.

I want them to look at him and say “Peter has Autism”.  Not because I asked.  Not because I told them what everyone else has said.

But because they see it.  Unequivocally.  Clearly.

And not because I wish Autism for my child.  Not in the least.  But because I need someone, something, to step in and remove the fear and the doubt and the onus that I feel.

The responsibility.

Are there still three spots?  Are they blacker?   Are they more in the center of my line of vision than before?

Was the diagnosis just a politically correct excuse for my ineptitude as a mother?

The guilt.

If I can exhale.  If I can just stop looking for the black spots.  If I can just accept the ambiguity as fact.

If I could just forgive myself…

…then maybe the world would seem clearer.

 

Pre-apocolypse

I thought I should post.

In case this guy is right and tomorrow is the great judgment day.

Fear not, loyal followers, I do not plan on making the cut and am certain I will be here to document the fear and pestilence of our last days.

I’m just that committed, you see.

There’s a chance though that I have a few pious (and bat-shit-crazy) readers who might be taken tomorrow and it would be unfair of me not to give them one last update on “Everybody’s Boy”, because I guess when you write about your kid on the internet and you deem him “Everybody’s Boy” you can’t exactly choose who everybody is.

I’m an equal opportunity blogger.

Besides, I just spent the past three hours shopping for underwear online and digging through the garbage looking for a SD card that *surprise* ended up on the counter next to the camera the entire time – and I will not go out like that – no way.

Highlights of the past few weeks are to follow.  Note they are not in order of chronology or importance.  Do I have to do everything for you?

  • The boy turned 5!  It was a wonderful day.  He got a Nintendo DS.  He has been mostly happy with it, except when he “dies”, and then notsomuch.
  • I turned >5.  I ate chocolate covered strawberries and got an awesome new flat-iron that won’t burn my hair.  Ironically I burned my scalp with it.
  • We had no less than THREE birthday parties to celebrate “5″.
  • Our family and friends, including my Mama from Florida, helped us celebrate last weekend and we rocked our Donkey Kong shirts like the awesome that we are!
  • A lot of cake was eaten.
  • A lot more Chinese food was eaten.
  • Our schedule was completely derailed causing Autism overdrive – which has resulted in some pretty frightening situations – not the least of which was his jumping into a lake on impulse and my dragging him out in a panic.  (It was kind of horrifying, but I’m not going to talk about it just now).  Suffice to say, he is (and was) fine and I have been taking my little yellow pills more regularly.
  • We found a new Occupational Therapist.  She saw the boy once and discharged him.
  • We found another Occupational Therapist.  She saw him today and has so far not discharged him.
  • I went to see Hair:  The Musical with two of my dear girlfriends. They totally got naked (the cast, not my girlfriends).
  • Everything else did not get done.

It’s been an emotionally harrowing few weeks.  I’m not all that optimistic that our routine will be stabilizing anytime soon, either.  So we’ll just keep on riding it out.

Unless, of course, I somehow did make the cut for tomorrow’s draft…in that case there is a bottle of Grey Goose in the very back of the freezer.

Enjoy sinners (and pour a little bit our for your girl, okay?)!


Something Big

On Cinco de Mayo,  Gus and I went to dinner.   I would have rather not, but we had childcare and who turns up their nose at date night?   I was in a really funky mood.   In part because it was “diagnosis day” but also because of something else, an awful gnawing feeling that I just couldn’t shake.

You might not know this, but I don’t do “talking” very well.  I loathe the telephone.  My mother only knows I am alive because I post status updates on Facebook.  I am horrible at articulating myself without a pen…or a keyboard.

My husband isn’t a big talker either.  In a world without email we would’ve never gotten married.  When  Gus and I argue, which is rare with the not talking and all, he knows that I will retreat to my computer and send him an email.  I don’t know why this is.  I just know that it is.  I can write things I could never say.

In honor of Cinco de Mayo we went out for sushi.  We are also not fans of crowds.  Did I mention that we are antisocial hermits that are 116 years old?

Right, anyway, I digress.  So there I am picking at my avocado roll, sobbing uncontrollably.  (I’m such a fun girl).

The poor guy had no recourse but to ask:

“Why are you crying?”

I’m <sob> not <sob sob sob>.

“You totally are.  What’s wrong.”

I don’t know.  It’s just…<sob>  It’s just…<sob> my birthday is next week and…and I thought I would’ve done something with my life by now. <super sob>  (See what I mean about not being so good with words?)

“So you haven’t done anything?  Nice, Debby, thanks.  Sorry to have held you back from reaching you “potential”.”

Ugh.  Stop making this about you, Gus.  I’m having an existential crisis.  Can’t you just be supportive?  I just thought I was going to save the world or something.

If Gus had been a lesser man, or less familiar with the emotional fallout I experience every so often few weeks he wouldn’t have graciously swept this conversation under the rug.  But he did and Ob-La-Di, Ob-la-da, Life went on.

It happens once in a while that I feel that I’ve not done enough for the world, that I’m not living up to my potential and that if I just tried a little more, worked a little harder, I could do something important.

Today is Mother’s day.  Today I woke up at 6:45 a.m. with my beautiful  child and we played Angry Birds in bed for over an hour before stirring.

He told me that he got me a Garfield card and a Princess Peach Wallet with Yoshi on it and that it was a surprise.

He was right.  I still acted surprised.

There was also a card from Gus.

In it he simply wrote:

You change the world every day.  The only world that matters.  Mine and Peter’s.  We love you very, very much.

Oh.

I guess I am doing something big after all.

Happy Mother’s Day to all the women who are changing the world.

 

When I allow myself to feel…

There are two Cinco de Mayo’s that I remember in my life.

The first involved a house party, a lot of wine coolers, some variant of “arroz con pollo” and ended with me passed out on the floor covered in Wheat Thins.

The other one was the day that Peter became “Everybody’s Boy”.  Three years ago today, my family and I sat with a psychologist while she delivered the news that our almost 2-year-old had Autism.

It wasn’t exactly earth-shattering.  Navigating the emotional fallout has been more of a slower and pervasive process.  In some ways it was kind a relief.  To have an answer, to begin a plan – the solace of knowing that there was a place that our family “fit” – those things I appreciated.

I’ve spent the past few weeks navigating my own emotional journey – in ways related to Autism – but in many ways related to the separating of my identity from “Autism”.

On “diagnosis day” I didn’t cry.

Today I couldn’t stop crying.

Today I allowed myself to look back and to the future.  I allowed myself to feel and to fear.

Tomorrow I will hold my head high and savor every moment.

Because in just 5 days “Everybody’s Boy” will be five years old.

And you should see him now…