I have an innate and irrational fear of bridges.

Bridges over water.

Tall bridges over deep water.

On the morning of May 9, 1980, a freighter struck the Sunshine Skyway Bridge.  This happened on the eve of my second birthday.  The bridge collapsed.  In the fog drivers didn’t notice.  They just kept driving off into the Gulf of Mexico.

Of course I don’t remember the actual event.   I do remember the stories of it for years after.  I remember visiting the destroyed bridge on a field trip and feeling paralyzed by the screams of the ghosts echoing from the sea.  It was just an ordinary day for them, one that welcomed an extraordinary tragedy.

They just kept driving off the bridge.  The horror.

Of course they did.  They kept driving because there was no reason to suspect that what lay ahead was any different than it ever had been.

They kept driving because it was what they knew, and what they knew was safe.

Except it wasn’t.  Not this time.

So for as long as I can remember I have feared bridges.   I forced myself in college to go back and drive over the “new” Sunshine Skyway Bridge.   It was after midnight and the suspension bridge was beautifully lit, I mean if I could’ve really appreciated any of that.  I could feel my hands shake and my pulse quicken.  I broke out in a cold sweat and the hair on the back of my neck stood up.  I’m not sure I exhaled fully over the entire 5.5 miles.  When I reached the end I wept uncontrollably.

I can’t explain why this particular tragedy affected me so deeply.

I still cannot drive over bridges.  Our family is spending a week in the Outer Banks this summer and I’ve no idea how I will get there.

There’s a recurrent dream of mine.  I mention it, and this story, because it has been especially pervasive over the past month or two.

In the dream, I’m driving and I miss a critical turn.   I somehow end up on a busy freeway heading straight towards a suspension bridge.  I search for an exit, or somewhere to turn around, or at least stop and catch my breath before the inevitable – but there is nothing and the flow of traffic is heavy.  I’m being carried towards facing my greatest fear.  I am not prepared.  I am not safe.  I’m going to drive right off…into the water.

The colors and sensations are exaggerated and bold.  The water is almost navy, the sky is light blue  and has not a cloud, the sun is bright and the air is calm and cool.  The bridge is an imposing, giant steel death-trap.  It’s expansive.  There is no forseeable end.

I have no escape.

I have inadvertently begun a journey that I am forced to complete.

I don’t know if the bridge is broken.  Or if it will break.  I don’t know if I will just keep driving into the water.

I always wake up before I get to the bridge.  I don’t know if or how I make it to the other side.  I can also never remember how I found my way to the bridge or  where I went off course.

I just have to keep driving.

That’s kind of what it’s like when you have a child with Autism.

My son has Autism…

…and I don’t know why.  I don’t know how I could’ve loved him better, wanted him more, given any more of myself.  But there must have been some way I failed.

…and I’m scared.  Because for all of the “he’s doing amazing” and “what a rockstar” comments I get, I am consistently surprised when “normal” comes and knocks me breathless.  I’m still grappling with the fact that all of our success, though worthy of celebration, is relative.  It’s all relative to some standard that I have fought so hard to ignore.

I’m scared for his future.  How long will he be in the Autism class at school?  If/when he does “mainstream” with his peers, will they accept him?  Will they shun him because he’s different?  Will they like him?  Will they bully him?  Will he even have friends?  Will he know what friendship is?  Will he even care either way?

…and I’m sad.  I’m sad because I want to protect him from this cruel world.  I want him to be celebrated for his beauty, his intellect, his charm – but more so – I want him to care.

I want my son to know love, to feel it, to need it, to accept it.

I’m sad that ability may have been taken from him – for the ability to give and receive love is the epitome of the human condition.

…and I am angry.

I’m angry at a system that doesn’t work.  At insurance companies that consider my son a lost cause and uninsurable – at a government system that however well-meaning – can justify disrupting his therapy, his routine, his treatment just because May has five Tuesdays.

I’m angry at people who stare, or pity.  Old ladies who “tsk” my parenting.  I’m angry at people who have “normal” kids and yet find ways to diminish and demean them.

I want to physically harm the woman the pulled her little girl away from my son in the play gym.  I want her to understand the pain she inflicted with her insensitivity.  I want her to know that as he called after her daughter “Friend!  Friend.  Come play with me. Where did my friend go?” I had to choke back tears while his father distracted him and told him that Mommy and Daddy wanted to play Donkey Kong.

I’m sad that my child knows everything there is to know about Super Mario Brothers and Donkey Kong.  That he can hear a 3 second clip of music and tell you which game and which level it came from.  That Mario and Yoshi and Diddy Kong are his friends.  That he’d rather be with them than with anyone.  It’s not because he doesn’t exude joy when he’s in that place, I welcome joy.  It’s just that I can’t be there with him.

I’m angry that today my son was so overcome with fear/frustration/confusion over a simple transition that he shredded paper towels with his teeth.   Because all the picture schedules in the world cannot make his world safe.

I’m sad that I can walk into a room and say hello, after being gone for hours, and that much of the time he will not acknowledge me.

…and I’m tired.

I’m tired of fighting.  I’m tired of feeling.  I’m tired of analyzing.

I just want to hold my little boy, to be Mommy, in whatever capacity that is.

Just for tonight.

On Sunday evenings I find myself feverishly preparing to-do lists.

One for work.

One for everything else.

Except, when work is so close to your heart, it’s kind of hard to differentiate.

It’s all important.  It all feels urgent.  I find it impossible, almost sinful, to disconnect at the end of the day.  I mean who does that?  Who only cares from 9-5?

I’ve always been this way, seriously over the top in everything I do, longing for perfection or acceptance or perhaps some marriage of both.

I used to brag that I worked right up until I was induced. My “nesting” involved a 24 hour bender at the computer, writing press releases, designing newspaper ads and flyers for the 3 months I planned to be off, basically putting my entire work on autopilot while I did this whole baby thing and apologizing profusely for the horrific timing (Peter was born just one month before fiscal EOY, what was I thinking?) of my child.

I was on my cell phone averting a PR crisis as I was assigned my hospital room. I checked voicemail on the way home from the hospital three days later.  Back to work “unofficially” less than a week after his birth.

Oh and the first two years of sweet Peter’s life.  The Saturdays and 60 hour work weeks.  The hours logged on the laptop.  I missed so much.  So much that I can’t get back.

What was it all for?  Sure, I worked for a cause.  I worked for thousands of at-risk kids.  Maybe something I did made their futures just a little bit brighter.

But at what cost to me?  To my family?  To my son?

But who brags about such a thing?  A total asshole – that’s who.

The blessing in the diagnosis was that it forced me to work full time for my child.  I became my son’s greatest advocate and his publicist.  I used the skills I’d honed for everybody elses’ kids for my own.

And so, for two years and nine months I was Mommy.  Just Mommy.  One hell of a Mommy, because I don’t do anything half-assed you know?  I owned it.  I embraced it.  I couldn’t imagine ever betraying him by returning to work.

And then, reality intervened, I couldn’t be just Mommy forever.  Financially, it was necessary for me to work.  I got lucky.  I fell into work that was so much like everything else I’d been doing in my own life that it didn’t even feel like work.

I thought I could maintain balance.

Then I started to slip in little ways, checking my email before bed.  Filing on the weekends.  Writing notes in the evenings.  Taking calls on Saturdays, because, “oh my goodness, I have to help.”  It’s a slippery slope.

You have to care to do this work.  You have to be emotionally invested to do it well.  You also have to know when it’s time to check out, for an hour or a weekend…or to cuddle on the couch and watch Ni Hao Kai Lan.

I don’t claim to know how to do this, but I do recognize the importance of saving a part of myself just for me – just for my boy.

Gus and I don’t argue often, but I’ll never forget that one of our most profound arguments ever stemmed from my work.

After a year of caring for a very sick wife, and a newborn baby, while working 40-50 hours a week himself and going to school in the evenings – I came home from some miscellaneous Saturday event that I probably could’ve begged out of.  We were both exhausted from weeks without adequate sleep and a colicy four month old (cough cough Autism) – and it was easy for everything to boil over.

He asserted that I was missing our child’s milestones, that I was putting work first.  I screamed back that my work changed the lives of thousands of children in our community.

He sighed and asked, “But what are you doing about this one right here?”

I never again want to feel that overwhelming guilt and loss again.  Because the truth can be hard to swallow.

I could write a book about why I believe I threw myself headfirst into my work during Peter’s infancy.  I believe I used it to escape what I felt as failure to bond maternally.  I truly lacked confidence in my ability to care for my child and I believed he didn’t “like” me.  I’m sure a  good bit of this was due to being a first time mom, but I also believe that we didn’t bond “traditionally” due to his Autism.

That’s a story for another time.  No sense in regretting the past for it brought us to today.

So it’s with caution that I choose my endeavors these days.  It’s not natural for me not to take on the world, but it is becoming something I’m mindful of – at least more often than not.

Yes, I wrote the to-do list tonight but I didn’t actually do anything that was on it.

Instead, I cuddled on the couch with a very “not sleepy” boy and watched kids shows on Netflix.  Because these days won’t last forever, and I’ve got a lot of catching up to do.