I’m pretty sure that what keeps you coming back to my blog has nothing to do with my witty and insightful (or even mildly humorous) posts.  I expect it has a lot more to do with my annoyingly sporadic blogging habits (owed in part to a vow to never blog while PMSing again) and inability to figure out how to create an RSS Feed (except for you, Mom, I know you keep coming back because you are obliged to believe that I’m generally awesome – and that you probably don’t know what an RSS Feed is anyway).

Today is your (un)lucky day everyone!  I’m taking a break from all that other crap my very important worldly obligations, to update you on the mundane details of life as of late.  A brief break, however, because I actually do have a lot of pesky (unpaid) projects to get done.  People can get all serious about deadlines and stuff.  As if.  It’s not like I’m a real employee or something.   Pfft.  Whatev.

So yesterday, I had an ethereal experience.  I saw the end – of – like everything.  The grim reaper was all like “Hey little girl, do you want to come for a ride on my dark horse and eat some Twizzler Pull and Peels?”  And I was like, “Um, are they the cherry ones or the strawberry?”  And he was like, “They only come in cherry dumbass.” And I’m all, “I know that Captain Obvious, I just wanted to see if YOU did.  Of course, I don’t want to come with you – - – unless, I mean, you’ve got Peanut Butter Twix.”  And then he grunted something about me not being worth his time and disappeared.

It was a close one.

Cause I was running a 5K (keep scrolling…I’ll wait…).  See, I had this awesome idea that I could raise some money for the ARC of Orange and get some of this <erm> 30 lbs of “Holiday Weight” off at the same time.  Except I didn’t take into account that 6 days a week I don’t even have time to brush my teeth hair before carting the boy to school, therapy, volunteering, grocery shopping, socializing, facebooking, playing Chuzzle on my iPod Touch, watching “19 Kids and Counting” and cleaning the house.  I kept meaning to train but *insert inane and unreasonable excuse here*.  That’s cool though.  I mean, a 5K is nothing.  I used to run/walk 2K to the gym in Mauritius, run the treadmill for 45 minutes and then run/walk 2K back home – uphill both ways – in the island humidity. That was only 5 1/2 years ago, so I’m good, right?

Wrong.

I knew about 1K in that I was in trouble.  The 110 year old guy in front of me hadn’t broken his stride.  His jacket was from the 2009 Boston Marathon.  I wore mesh running shorts purchased the night before in a panic.  It was 30ish degrees.  Mesh shorts and fat thighs don’t go well together.  Thank heavens it was so cold that my legs were frozen and I couldn’t tell I had such huge blisters until much later.

I stopped a few times to try and figure out my iPod.  I had created a “running” list with all high energy songs (see, I had absolutely no free time to train) but I couldn’t get it to work.  Finally I gave up and put it on shuffle.

I walked a lot.  I only ran when I’d come up to a corner where people were there to cheer us on.  “Go Tarheel jacket (that was me)!”  I ran like freaking Rocky going around those corners.  When we got to the spot where they handed us water cups as we went by I chugged it and threw my cup on the ground (it was AWESOME to litter) like a rock star.  Around the 2 mile mark I was paced at a 12 minute mile.  Not that that is anything to brag about, but I walked a lot.  I wasn’t last.  Close, but not last.

I slowed down about the time Old Grimmy and I had our life and death chat.  I kind of thought about just hailing a cab, but then I realized I had to give that dumb chip back or pay 25 bucks so I kept it up.  As I got closer to the end I heard the cheers.  I walked until I rounded the corner and then put on my game face again.

I knew they’d be taking pictures towards the finish line so I slicked my hair back and stuck my iPod earphones back in.  It was still on shuffle.

I reached the finish line at 38:39.  That’s nothing to be proud about, I know.  But I didn’t die and that rocks.

The song playing on my iPod at that exact moment?

R.E.M. Everybody Hurts

When your day is long and the night, the night is yours alone,
When you’re sure you’ve had enough of this life, well hang on
Don’t let yourself go, ’cause everybody cries n everybody hurts sometimes

Sometimes everything is wrong. Now it’s time to sing along
When your day is night alone, (hold on, hold on)
If you feel like letting go, (hold on)
If you think you’ve had too much of this life, well hang on

‘Cause everybody hurts. Take comfort in your friends
Everybody hurts. Don’t throw your hand. Oh, no. Don’t throw your hand
If you feel like you’re alone, no, no, no, you are not alone

If you’re on your own in this life, the days and nights are long,
When you think you’ve had too much of this life to hang on

Well, everybody hurts sometimes,
Everybody cries. And everybody hurts sometimes
And everybody hurts sometimes. So, hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody hurts. You are not alone

——

Karmic, no?

There was a time when I debated fervently and with conviction about politics, religion, global affairs, economics and everything in between.  (Well, maybe the part about economics isn’t true.  I can’t fathom I’ve ever being compelled to debate that.)   I truly believed my voice could impact change.

I was young, naive, on a crusade to save the world – seeking peace one interaction at a time.  I believed that all people were inherently good, that we all wanted generally the same thing, that there nothing that a fair amount of diplomacy couldn’t solve.

I wrote.  A lot.  Mostly for me.  I see now that I was simply coming into my own, flushing out my own identity.  I wrote with an eloquence and passion unfettered by the demons of loss, anger and regret.  A kind of blind optimism that could change the world – if we didn’t out grow it that is.

It was glorious ignorance.

Then divine comedy intervened and gifted me with the most amazing child.  Gorgeous and enigmatic, precocious with an old soul and a curious young heart.  Ah, but he was high strung just like his mother.  I knew his personality before he was born.  I knew, deep down in my heart, that he would be an only child – not just because of the physical impracticality of having another – but because he would command every bit of our attention.

As he grew my purpose became less about me and more about him.  I stopped having those intrepid thoughts about joining the Peace Corp and snuggling babies in Africa.  I no longer desired the need to understand why people held so tightly to their beliefs that they couldn’t see past them.  I accepted that I don’t understand the big things in life – war, peace, “god”, death, poverty, the general human spirit.  I accepted that I likely never would.  I was okay with not having conviction, because I felt that conviction could only come with complete understanding.

This metamorphosis maybe have been my saving grace because we all know that Autism doesn’t make sense in the slightest.  There’s no wrapping your head around it.  It just is.

Don’t get me wrong.  I have the utmost respect for faith.  I wish I could believe that someone/thing has my best interest at heart and is giving me what I can handle and only that.  That if I just trust it will all work out.

I can’t.  Perhaps I am too much of a control freak to comprehend anyone else being responsible for my life.  Or perhaps I just can’t fathom how that power could exist and there still be such terrible atrocities in our world.  Regardless of reason, I’m okay with this fact as well.  I’m not sure I’m meant to know the answers.

The idealist in me still exists.  I’ll always embrace naivety before skepticism.  I can’t do “this” otherwise.

Trusting in the innate goodness of humankind for yourself is one thing; trusting for your child is another.  The world is cruel and impatient with what it doesn’t understand.   In some weird way the gift of Autism is that P is blissfully ignorant of the stares, comments, laughs…  I don’t want him to understand being different as being in-equal or less.

Ultimately, it means relinquishing control and accepting that at some point we all have triumphs and hurdles.  Letting go and having faith in the process, maybe?  I mean it’s one thing to say that different is equal, but special concessions sometime merely amplify “different”  keeps it apart from equal.

In the end, it’s about trust.  It’s about trusting others to see what we see in our children.

P.S.:  I still believe my voice can impact change and I still believe the way to do it is one interaction at a time.

A young woman with Down Syndrome cleans tables at a popular fast food restaurant in a small town.  She’s there most every afternoon.  She takes her work seriously.  She takes pride in a job well done.

A group of teenage girls frequent the restaurant after school.  She’s not much older than they are.  They order french fries and ice cream and giggle about boys.  They complain about their teachers assigning too much homework, plan meticulously what they will wear to the Homecoming dance, and talk about how their parents are so uncool for not letting them have a credit card.

Day after day, months on end, the girl crosses paths with these girls.  They always smile politely and say “thanks” when she takes their tray.  She feels as if she knows them by their stories.  She believes that the simple pleasantries they share with her make them her friends.

She runs into one of the girls at the mall on her day off.  She is with her mother.  The girl is with a boy she is very interested in.  She smiles. Her “friend” smiles back. She waves. Her “friend” waves back.  Then she begins to walk towards the girl to greet her.  But the girl quickly turns away and leads the boy in another direction.  Her “friend” doesn’t want to be rude, but she’s uncomfortable.  She doesn’t know how to interact with this girl.  She worries about what would the boy she’s trying to impress might think.  People make fun of those who are different.  People fear what they don’t understand.  She is a coward.

Fifteen years later that girl still blushes with shame when she remembers that afternoon.  She doesn’t even remember the guy’s last name, but the look of pain and rejection she inflicted will haunt her forever.

It’s one of my most poignant memories of my teenage years. One of very few regrets in my life.  I wish I could go back and relive that interaction and make it right, to give her the respect she deserved, and to have given myself the chance to make a new friend.  I can’t, obviously, so I can only hope that somehow she found it within her to forgive my childish stupidity.

Just under three months after Peter was born I was working an outreach event with a colleague of mine.  My organization had an info booth at an Autism fundraiser.  Aside from viewing the movie “Rainman”, I knew very little about Autism.  Business at our booth was slow, we were supposed to bring an activity for the kids and our leaf rubbings were super inferior compared to the “balloon animal lady” at the booth next to us. I took off to to network and steal outreach ideas from the other organizations represented.

As I walked around, I watched the parents with their children.  Some children were screaming, some were out of control, some seemed locked up from the rest of the world.  I confided in my colleague that my greatest fear was that Peter would have Autism.  I told her I wasn’t as strong as these parents, that I wouldn’t be able to care for a child who was unable to show me love.

She reminded me that, in the unlikely case that I were ever in that situation, I could manage and I would.

That night, in my postpartum-y hormonal upheaval, I cried for those children.  I grieved for their parents.  I thanked god that my son only had a funny toe to contend with.  I promised myself I’d learn more, I’d be more compassionate, and that I’d be grateful.

You know how it turns out.  Twenty-one months later my son was diagnosed with Autism.  I learned that I could manage and that I would manage – and that it was nothing like I imagined.  He loves, he laughs, he fills my heart every single moment of every single day.  He is a child.  He has Autism.  He is a person.  He is different, but he is the same.

When we define others based on fear or misunderstanding we only stand to lose.  When we encourage everyone to live to their fullest potential, and provide an unbiased and supportive environment for them to share, everyone benefits.

When we stop pitting us against them, and using slanderous labels to define the “others” we can see that all human beings want to choose their own life path, to be understood and respected.   If we focus on strengths, on commonalities, on unity – the way we have pulled together in crisis over civil liberties so many times before – we can leave a foundation of mutual respect that will foster creative greatness for the generations to come.

It starts by taking a second look at our perceptions of those who are differently-abled.  It starts with the example we set for our children in the way we support human dignity.  It starts by ridding our vocabulary of hateful and inaccurate descriptive language.  It starts by believing that we can enact change.

Because we can, and we will.

Won’t you take that pledge today?  Spread the Word to End the Word.