I Wonder What Would Happen To This World

Pictures, like songs, have the ability to bring out memories that are buried down deep.

I’ve been thinking a lot about that lately – those memories hidden away – after reading MOM-NOS’ great post about ASD (autism spectrum disorder) and PTSD (post-traumatic stress disorder).  If you haven’t read it yet, you should.  It’s here.  And here.  And probably about 800 other places at this point.  It’s that good.

While thinking about that post, I wondered about my own moment of trauma.  The one I live over and over again, but have never shared.

This isn’t a B Side post, because while it’s a memory, it’s not a good one.  It’s not entirely an autism post either.  I guess it’s more of a “me” post.  And since I use my blog as free therapy for me, I suppose I’m entitled to a “me” post every once in a while.

note:  I know members of my family read this blog.  I’m giving you warning now that you might not want to read this, and if you do, I won’t want to talk about it later.  Because I’m writing about it here instead.

Last week of August, 1997: I’m with my family at the annual summer fair in Vermont.  Going to the fair together has been a tradition since I was little, and we always had our family “portrait” taken there.  This year, I resisted going.  It wasn’t because I was ashamed to be seen with my family – I was 25 years old and past all that.  But I was busy. I was working in college admissions and we were getting ready for the new school year to start.  I had things to do. But my parents were insisting that I go.  Begging, really.  So here we are at Scotty’s photo booth.  And we take our picture:

It’s our last one.

This will be one of the last times I go to the fair.  I’ve been a handful of times since this day, and never since I’ve had kids.

August 31, 1997: It’s one o’clock in the morning and I’m sitting in my apartment in my bed watching the news.  They are reporting that Princess Diana has died in a car crash.  The phone rings and it’s one of my best friends from college.  She’s calling to talk about the breaking news of the day and share the conspiracy theories already swirling all over the world.

I share with her my breaking news.  That afternoon, my parents sat me down to tell me that my father had cancer.  Pancreatic cancer.  I was awake watching the news because I was afraid to go to sleep.  My friend, in her first year of medical school, fell silent on the other end of the phone.  She knew what that meant.  A five percent survival rate.  Months of chemotherapy and other experimental drugs on the horizon.  A life changing moment.  We hung up and I stayed awake for hours.

I still cannot watch footage of Princess Diana’s car crash without thinking of that night.  For months after, I would leave SportsCenter on while I fell asleep so I wouldn’t have to be alone with my thoughts.

November 12, 1998: I’m sitting in my parents’ bedroom with my father.  We know he doesn’t have much time left.  We’ve given up on hospital stays and he’s come home to be surrounded by family.  The spreadsheet that I created to track his medications has long been pushed aside since we’re only focused on pain management now.  A week prior, he had won re-election to his third time in the Vermont Legislature.  I wrote all his campaign material and answered all the candidate surveys.  My whole family is at the house.  My brother had come home from graduate school to celebrate an early Chanukah, since none of us knew if my dad would be around in December.  He had started the journey back to school on this day, but turned around when my sister’s guinea pig “Ham” died in the afternoon.  He came back to help bury it in the pet burial ground we had on our property.  And now, my brother sat downstairs with my mother and sister having dinner, while I stayed upstairs with my dad.

I am eating Macaroni and Cheese.  We’re watching “Must See TV”.  “Friends” is on.  My dad is sitting across the room from me in his green recliner.  It’s where he chose to be during the times when he could no longer stand being in bed.

“I’m sorry (your sister’s) guinea pig died.”

The voice came from the chair.  Strong and clear.  The first coherent sentence I had heard from him in a long time.

“I know, Dad.  I’ll tell her.”

Then, a few moments later, the seizures start.

I yell “Dad!  DAD!”, and then “MOM!!  MOM!!”.  I didn’t need to call her name.  The baby monitor that my mom had on was already sharing what was happening.

I yell to her to call my uncle who lives next door.  I dial 911.

I forget in this moment that 911 had not come to our rural part of the state yet.   The time it takes for the operator to connect me to our local dispatch seems like hours.

I don’t need to give them our address.  Just our name.  My father had been on our town’s rescue squad for many years.  They knew where we were.

My mom and uncle usher me out of the room.  The ambulance arrives, knocking down the baby gate at the bottom of the stairs that was there to keep the dogs from getting up to my dad.  They take him away.  My mom, brother and uncle follow.  I stay home with my sister.

The call came from the hospital a couple of hours later.  My dad was gone.  “ER” was still on the TV upstairs.

It’s a year before I can watch “Friends” or “ER” again.

The green recliner is now at my house, and is my middle son’s special chair.  When the demons of his autism rise up, this is where he retreats.  He rocks there.  He curls up in the seat of the chair and feels safe.  It is his “green chair”.

I go over those last moments over and over again for the next 12 years.  Was there something I could have done differently?  Why I was the one in the room with him at that moment?  What else could have have said to him before I lost the chance to say anything more?

February 17, 2011: A giant package arrives in the mail addressed to me.  I open it and find about 50 pictures inside, sent to me by my cousin.  She was helping my 89-year-old Grandma move into a smaller place and thought I’d be a good “manager” of these photos.  I’m waiting for the kids to get home from school, so I have a moment to look through the pictures.  The first one I pull out is this one:

And all the memories come rushing back.

This day would have been my father’s 64th birthday.

February 27, 2011: I start this blog post and the healing process.  For the first time, I can write about these memories, although I’m not sure I’m ready to talk about them yet.  When I look at that photo I see uncertainty in some faces and blissful ignorance in others.  My parents know life is about to change.  I do not.

That picture made me think about the family I have now and the life-changing event of my son’s autism diagnosis.  I wondered if there was a photo of us before our world changed forever.  I searched and searched and found this:

It was our holiday card for 2009.  This was taken three months before our son’s diagnosis.  As parents, we knew something was going on.  Our kids had no clue.

Two life altering events for me.  And the photos that trigger the memories.

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I chose the Harry Chapin song “I Wonder What Would Happen To This World” for a reason.  Harry Chapin was one of my father’s favorite singer/songwriters.  In July 1981 we were overseas on vacation when he read the news of Harry Chapin’s death.  I was young, so the memory is fuzzy, but I remember thinking this was one of the first times I had seen my father sad.  The lyrics below from this song are on Harry Chapin’s headstone.  I often think how different life would be for me now had the two events above not happened – if my father was still alive and if my son did not have autism.  While writing this post, I have realized that it’s useless to think that way.  What’s most important is how we take what is given to us and use it to change our corner of the world.  To let go of the past trauma and stay in the present.  And with that, I hope I can finally move on.

“Now if a man tried
To take his time on Earth
And prove before he died
What one man’s life could be worth
Well I wonder what would happen to this world” – I Wonder What Would Happen To This World by Harry Chapin

 

The B Side – Love and Marriage

It’s pretty clear from some of my last posts that I need to take a break from all things autism once again.  It’s time for a B Side.

Some of you know that Tim and I have, um, different political views.  He’s the Mary Matalin to my James Carville.  And yes, I’m not sure which one of us finds that more insulting.  So in honor of my least favorite holiday (Valentine’s Day), I bring you an interview with my most favorite man:

ME:  So, when did you develop such strong political views?

TIM:  I saw that you reworded that questions.  Originally you started with “how did you get so wrong-headed”?

ME:  I’m trying to be kind.

TIM:  My opinions have always been strong.  Comes from the confidence in knowing that I’m right.

ME: Does it bother you that we have different views?

TIM:  No.  I do find yours a bit disturbing at times.  (smiling)

ME:  When I was in the Vermont Legislature before we were married, you were incredibly supportive.  Was that hard?

TIM:  No, we were on the same side of that debate (about civil unions).  I’m a social liberal.  We would have had strenuous debates had you consistently voted to expand government.  But I wasn’t living in Vermont, so it wouldn’t have affected me.

ME:  Speaking of that, would you ever vote for me?

TIM:  Yes, because you’re a good person.  But it would be hard if you were supporting a platform that included the expansion of government.

ME:  What do you think we’re teaching our kids about politics?

TIM:  We’re not teaching them anything political.  Because we don’t talk about it in front of them.

ME:  We don’t?

TIM: No.  Because you tell me not to.

ME:  Would you consider any of my views a dealbreaker?

TIM:  Of course not.  You can have any wrong-headed opinions you want.

(playfully smiles at me again.  The smile that made me fall for him all those years ago.)

ME:  But we agree on the important stuff, right?

TIM:  No.  We agree on stuff that IS important.  But there is a lot of important stuff, like fiscal responsibility, that we don’t agree on.

ME:  Do you know that I end every political conversation with you by saying “Okay, but you’re wrong!” in my head?

TIM:  Clearly you keep it in your head because you can’t defend it out loud.

ME:  (laughing) Do you derive anything positive from us having opposite views?

TIM:  Other than the general sense that it’s what makes you you? Do you get anything positive from it?

ME:  I do.  You wouldn’t be you.  It would be boring to just have someone agree with you all the time.  Do you frustrate me?  Constantly. Aren’t you glad we’ll always have something to talk about?

TIM:  We could grow old talking about how evil government is, and I’d be okay with that.

(After 15 years he really knows how to push my buttons. I love this man.)

ME:  But you love me, right?

TIM:  Of course.  Always and forever.

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There you have it.  I will never change him and he’ll never change me.  I wouldn’t want it any other way.  Just like I wouldn’t want to live anywhere where the weather is the same everyday.  Sometimes it takes a week of 10 degree weather to really appreciate it when it’s 50 degrees and sunny.  I love those moments when Tim and I are on the same page politically.  It isn’t often, but when it happens, it’s pretty special.

I do believe that what we do agree on are the most important things – we want our three boys to live in a safe, caring world that respects people’s differences and differing opinions.  We want them growing up knowing that they are well loved by their parents.  And that their parents love each other too.

Even when the other parent is so clearly wrong.

“Love and marriage, love and marriage
They go together like a horse and carriage
This I tell you brother
You can’t have one without the other” – Love and Marriage by Frank Sinatra

 

The B Sides – Imagine

The events in Tuscon, Arizona yesterday (January 8th) prompted me to write this B Side memory of my own life in the political world.  I don’t write or talk a lot about the days I spent in the Vermont State Legislature, but yesterday’s shooting brought back a flood of memories from my last year there.

In January 2000, we were getting ready to return to our legislative session after the break.  In Vermont, the legislature is in session from January until late May or early June, and then off again until the following January.  The reason for this is to create a “citizen legislature”, so that the people in charge of making the laws aren’t too far removed from the people affected by those laws.  It was my first (and only) term in the state legislature, having been appointed in 1999 to fill my father’s seat after he died.

Shortly before the session began, the Vermont Supreme Court handed down their landmark ruling of Baker v. Vermont, stating that homosexual couples had the constitutional right to enter into an agreement like marriage – the first such ruling in the country.  They gave the legislature the directive to create laws to rectify this.  With one quick statement, the entire 2000 legislative session was turned on its side, and basically focused only on this one issue.

I’m sure I don’t have to tell you how emotionally charged this issue was (and of course, still is).  What I will tell you is how quickly the atmosphere in the State House changed.  Our little state suddenly had the attention of people from all over the country and the world.  Every public hearing held on the subject had hundreds of attendees.  Reporters from across the world came to report on the proceedings.  Money poured in from all sides in an attempt to influence us.  Every meeting, every discussion was front page news.

All of us were on edge.  The mood in the State House went from easygoing and laid back to very tense.  Every morning, my mailbox was full of hate mail, condemning me and telling me I was going to hell for my beliefs.  I got followed in the hallways by lobbyists.  My name and telephone number was published in the state’s largest newspaper and broadcast on local radio, with the “encouragement” to call me everyday to say that God hated me.  For the first time in recent history, the security staff was armed.  And as the legislature’s youngest female representative, the police staff checked in on me when I arrived in the morning and when I left for the night.

But for the most part, the members of the legislature remained cordial and collegial.  When public hearings turned heated, the representatives would stand up for each other and demand respect.  Even though the very core of our government was being challenged, we stuck to proper procedure and the Vermont way.

What I saw that year was extreme political courage on both sides.  I saw farmers, teachers, doctors, and lawyers come together.  And when the final bill came to the floor to create the new civil unions, the debate itself remained civil and respectful.  Members stood up and voices trembling, explained why they could not vote for the bill because it went against their beliefs.  Other members, like my seatmate, stood up and talked about her lesbian daughter for the first time ever.  She knew that by voting for the bill, she would lose her re-election in the fall.  But in her heart, she couldn’t vote any other way but in favor of the bill.  When she sat down after her speech, she started to cry.  Members from all over the room (and from both sides of the debate) broke protocol and came to her side.  It was an amazing display of solidarity and support – showing the world that we wouldn’t stand for the outside tyranny that had invaded our beautiful building.

The bill passed and became the model for other laws across the country and the world.  Many members of the legislature lost their re-election bids, including my seatmate.  I chose not to run for election that year, deciding instead to move to start my life with Tim and begin our family.

Yesterday, watching the news, the memories of those months came back like a ton of bricks.  I don’t care what side of the political debate you fall.  None of that mattered to that little nine year old girl Christina Taylor Green.  According to news reports, she was at that grocery store to meet Rep. Giffords because she had just become interested in politics.  The innocence of this is painful and striking.  This young girl, just slightly older than my oldest child, could have found a cure for cancer.  Or been President.  Or a teacher.  Or a mother.

The political left and right will argue for days and months over who is responsible for this tragedy.  But it doesn’t matter.  What matters is that it’s time to change how we treat one another.  It’s time to show the same respect and civility that my colleagues did for each other 11 years ago.  Because what is the purpose of all the anger if the people we say we’re fighting for aren’t alive to hear it?

“You may say that I’m a dreamer
But I’m not the only one
I hope someday you’ll join us
And the world will be as one” – Imagine by John Lennon

 

The B Side – Life is a Highway

It’s time for another break here.  Time for another “B Side” post.

I started these posts back in October when I decided I needed to write about something else besides “all things autism”.  My B Sides are going to be stories about my favorite memories, ones that have had a lasting impact on my life.  I was  going to try to write a “B Side” at least once a month but November skipped past without one.  Today’s Special Needs Blog Hop about random thoughts reminded me it was time for another one.  So for today’s “B Side” post – Life is a Highway.

The year was 1987.  I was 15 years old and just passed my learner’s permit test.  Barely passed.  Back then it was a paper test and you couldn’t get more than four answers wrong or you failed.  I got four answers wrong.  But I ran out of there with that yellow paper waving in my hand like they do now on American Idol.  The beginning of teenage freedom.

I begged my father to take me out right away for a drive.  He agreed and we climbed into our Jeep Cherokee.  It was January in Vermont and the roads were covered in snow and ice.  My father, ever the cautious one, was reminding me to take it slow.  Very slow.  Very very slow.  Too slow for this 15 year old.

We got about 3 miles from the house driving along the back roads in our small rural town.  I made it through my first stop sign.  My father started breathing again.  Until he started screaming:

“You’re too far right!!  You’re too far right!!”

And into the ditch we went.

(several years later when  my dad was sick, we joked about his “too far right” comment – he said he was really talking about my politics.  Considering how left of center my dad was politically, it wasn’t hard to be too far to the right from him.  But I digress…)

We were sideways in the Jeep in the ditch.  Because of all the snow, I couldn’t see the side of the road and in we went.  We climbed out of the car and trudged to a nearby house to call my uncle for help (no cell phones back then of course).  And for the 30 minutes it took for them to pull the Jeep out of the ditch, I avoided my father’s glare.

After checking the car to make sure there was no damage, my father handed the keys back to me.

“You’re driving home.”

I remember my shock and fear like it was yesterday.  I had come inches away from totaling the car.  Yet here he was, handing the keys back to me, not taking no for an answer.  So very slowly, very very slowly, I drove us back home.

I think back on this moment as a mother with three kids of my own and now I get it.  My father knew that if he drove home, my confidence would be shot and I would be terrified to get back in the car.  And I was.  I was a nervous wreck.  A few months later I was involved as a passenger in a different accident (not my fault this time) and it took a long time for me to get behind the wheel again.  But at that moment my father had to show me that he believed in me.  He wasn’t going to let one mistake change that.  If he got mad or yelled or kept me from driving for a while, my anxiety would win and I’d end up a very nervous and unsafe driver.  My father chose the path of trust.  And several extra hours of practice before I was allowed to test for my license.

I still hear his voice in my head when I drive sometimes – when I’m changing lanes on the highway or reminding my kids to buckle up for safety.  In eight short years, my oldest will get his learner’s permit.  And I hope that I can show my son that I have the same confidence and trust in him that my dad had in me.

Or I might just make my husband teach him.

Me, my brother, and my dad. Before our driving turned him gray.

“There’s no load I can’t hold
Road so rough this I know
I’ll be there when the light comes in
Tell ’em we’re survivors

Life is a highway
I want to ride it all night long” – Life Is A Highway by Tom Cochrane