Monthly Archives: February 2012

2.24.02

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How do you write these words?

How do you tell his story?

I asked this of myself hundreds of times over the past month.

I finally accepted that I could never tell the story adequately.  That if I was going to do it, I just had to reconcile that within myself.

It wouldn’t be perfect, but it would be his.

Even now as I sit at my computer ten years later I find myself emotionally defunct and just as aware of the enormity of grief as I was that day.  A grief so all-consuming that no one person can process it.  The only thing that can be done is to allow yourself to feel a little bit at a time, on a schedule, while forcing yourself towards resilience otherwise.

On February 24, 2002 my son died.

Before Everybody’s Boy.

Before my life changed forever for the second time.

There was another boy.

A boy I didn’t expect. A boy I wasn’t sure I was ready for.  A boy that tested my faith, my strength and my resolve to live.

I was young.

I was pregnant.

He was sick.

His diagnosis was “Incompatible with Life”.

Even so, I had faith back then.  I prayed and willed all the doctors to be wrong.  I begged God to heal him.  I begged for a miracle.

When that failed, I prayed to God to take me instead.

He lived in my womb for 25 weeks and then he died.

I held his tiny and still  body. One pound and eleven ounces.

Perfectly shaped long fingers, just like mine, otherwise remarkably primed for the concert piano.

There was a hint of my smile on his lifeless mouth.

It was the worst day of my life.

When you are 23, you can’t imagine that these things happen.

Babies don’t die.

But he did.

He did die.

But he also taught me how to live.

Because there is something about losing a child that puts everything else into perspective.

Because Autism is really hard, and  heartbreaking, and scary.

But it is not “Incompatible with Life”.

So for that, and so much more, I will always be indebted to my first-born son.

In memory of ~Bradley~

2.24.02

 

 

About Nancy

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I want to introduce you to Nancy.

I don’t think she’s mind my sharing her photo.  Although, I didn’t ask her.

You see, I couldn’t ask her.

Because she’s dead.

I know, I can’t believe it either.  How can someone so effervescent with life be gone?

My coworker Krysta was picking up frames at a local thrift shop to hang photos in our new office when she met Nancy.

It seems that at some point Nancy’s photo and the frame that held it were donated.

Krysta couldn’t bring herself to leave her behind.  She brought Nancy “home” to our cozy little office where we eat-sleep-and-breathe inclusion.

It might’ve been a few days before I notice Nancy’s presence.  I’m not terribly observant.

I remember walking around the office to stretch my legs and noticing the beautiful frames Krysta had thoughtfully acquired.  I remember being drawn to Nancy’s photo.  I asked Krysta who she was.  We work with a lot of people each year, but I had seen most of the photos we planned on framing before, and I knew that I would’ve remembered that face.

Krysta told me that she had picked up the frame at a thrift shop and that the owner had told her that the name of the woman in the picture was “Joan” and that she had died and somehow the photo ended up there in an estate sale.

We both agreed that it must be terribly sad to be “forgotten” like that.

As tears began to brim, I made my coworkers promise that they would never ever donate me.

We just kind of kept “Joan” around.  Until one day the frames began to fill up with faces that we knew and we needed “Joan’s” frame.

It was then that Krysta discovered, on the back of the photo the words “Nancy, 1990″ and tucked her away, presumably, in the safety of her office.

A few weeks later I found myself a complete and disheveled mess.  Things with EB were not going well.

I was struggling.

One morning I stumbled in to the office after a night of little sleep, not at all optimistic about my ability to put a dent in my to-do list.

As I off-loaded my laptop bag and flipped on the light I was greeted by the most ethereal smile and the following words:

It’s true that I have never seen the kind of happiness that Nancy displayed.  She genuinely looks as if she smiled all the time.  It’s as if joy came as naturally to her as breathing.

Where does that joy come from?  

Sure, I feel joy.  I feel joy daily.  But I don’t exude joy.  I am not, by default, a joyful person.

I am an optimistic person, a resilient person, a thoughtful person – but I am not a joyful person.

Nancy’s home remains in my office.  Though, I might consider sharing her around the when my colleagues need that extra boost.

I want to be the kind of woman that Nancy was.  I want someone to look at my photo 22 years from now and see unabashed joy.  Joy that is contagious.  Joy that is inherent.

I find myself looking to Nancy in everything I do in life these days.

“What would Nancy do?”

Would Nancy eat that second cupcake?

Would Nancy use the Oxford comma?

Would Nancy wear yoga pants on casual Friday?

The truth is, I don’t know what Nancy would do any better that you do.  But I like that her presence gives me pause.

I have to wonder if perhaps Nancy came to me on purpose.  Maybe she knew that her portrait would shape my life in some small (or big) way.

And maybe that’s why she’s smiling.

 

Relating Publicly

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It’s true.  I have the best job ever.

I couldn’t be happier in my career.

It’s really a funny story, though, how it all evolved.

I bet you wonder what I do all day.   Or maybe you don’t and that’s okay too.

Um…if you are the latter of the two you should probably stop reading now.

Also, it’s not really okay if you don’t wonder.  I actually am pretty offended.

When I decided to start working in non-profit in 2005 more than a few people thought I was crazy.  You don’t work in non-profit to make money.  I mean, it’s  ”non-profit”.  It’s right there in the title.

You certainly don’t go into non-profit if you are a Public Relations professional.  Unless you’re totally cool with defaulting on your student loans.

Plus, the thing is, there aren’t really Public Relations professionals in non-profit.

There are Development people though.  Lots and lots of Development people.  All who probably studied Public Relations or Journalism or Marketing or Advertising or maybe even Quantum Physics.

All who woke up one morning and thought.  ”I’m going to change the world!  I’m going to work in non-profit.”  Partly because of blind idealism and partly because that’s what 20 something hipsters do.

I know this because I was one.

Ah yes, we idealist hipsters who spend our days writing grants, making presentations to rotary clubs and asking our weary friends and family for the millionth time if they “want to buy a raffle ticket?”.  Well, do you?  Go on now, I’ll wait.  

Sometimes we get to do Outreach (that’s non-profit speak for “Marketing”) which is fun…and kind of a teensy bit like Public Relations (or so we tell ourselves).  We get to think up and plan fun events and make brochures in Word with clip art.  Or order 10,000 mini-frisbees printed with our organization’s name and website to hand out at community fairs.

Oh but the events.  Those are so much fun.  It’s when you can really let your creativity shine.  Like that one time (hypothetically speaking of course) that there was a county-wide air potato collection fundraiser and “you” thought it would be really cool to take part in to raise money for “the kids”.  You thought you were so clever  calling it “Taters for Tots” until you learned that your Executive Director did not share the same enthusiasm…as evidenced by the look of utter disgust that cut right through your soul as you cheerfully passed out fliers at the Board of Directors meeting.

You know, I wasn’t quite honest.  There is some Public Relations work involved.  About two or three times a year you get to write a press release and send it to an outdated media list and have about 77% of the emails bounce back.

…and maybe you will be interviewed on an AM Talk Radio program that will broadcast at 4:30 a.m. on a Tuesday and you will consider waking up the whole family to gather around and listen to it but will sleep through the alarm because sleep is way better than hearing yourself on the radio talking about how you gave a bunch of backpacks full of school supplies to inner city kids to help them get “ready for school and ready for life”.

But you will totally put that shit on your résumé anyway.  You’ll also Google to see if it qualifies you for membership in SAG.

Anyway, this is not at all what I planned on writing about tonight.  I have a really great story that I just can’t seem to make segue, so it seems I’ll be posting again within the next few days.

While you wait, feel free to buy a raffle ticket.

Meme

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I am grant-writing like crazy this month at work.

Ergo, I have had a hard time finding the energy to blog.

So instead of actually writing something, I made a meme.

You’re welcome world.