Thursday, January 20, 2011

Inauguration Day

It's been seven years today.

Seven years since we pulled out of the driveway, my mother and Betty waving to us from the living room window.

Seven years since we buckled Boo into his car seat and headed to the hospital.

Seven years since we sat in a too small room with no toys, carrying a diaper bag without enough distractions and snacks for three hours. 

Seven years since an intern peppered us with questions for most of those three excruciating hours, as our boy played with a toy car, as the specialist swooped in for the last five minutes of those 3 hours and frowned at him. 

Seven years since we heard the words "your son has clinical features of autism spectrum disorder" and "I knew that would be the case just looking at your questionnaire."  (Never mind looking at the child.)

Seven years since we felt our hearts break, in the same hospital where my infant cousin died following heart surgery. 

All the king's horses and all the king's specialists couldn't put any of us back together again. 

To me, January 20 will always be diagnosis day.  But more often than not, it often carries with it an inauguration, of a Governor or a President.  

I've always thought the anniversary of Boo's autism diagnosis day and inaugurations is a little bit ironic. The Husband is a presidential scholar, has an advanced degree in the study of the American Presidency.  It was once a calling academically (although not politically, albeit briefly on the local level, despite what some may have thought.) 

Like father like son, one of Boo's first intense interests was, indeed, the American Presidents.  The Husband had bought a deck of Presidential flash cards from the National Constitution Center and showed them to Boo, never expecting that at 2 years old he would recite them, in order, along with their Vice Presidents and their political party.  History repeated itself at family gatherings, as Boo would be asked to recite facts about Millard Fillmore just as his father did at the same age. 

Inauguration Day is one with much promise, of abundant hope, just as it was 50 years ago today when the country welcomed President John F. Kennedy on January 20, 1961, with promises of New Frontiers and Camelot.

And hope prevailed again, on January 20, 1993, when we braved the bitter cold to be among the throng of people in Washington D.C. for President Bill Clinton's inauguration.  And never moreso was hope in the air than it was two years ago, on January 20, 2009, when President Obama was inaugurated.

Yet hope was nowhere to be found in a cramped examination room on January 20, 2004, as our questions went unanswered, as we took a badly-photocopied article about the signs of autism, as we collapsed in tears and blinked in disbelief when asked to decide (not at this moment, you have time, but not much) on a therapeutic course of action before the proverbial guillotined window of time would slam shut on our 2 year old's blond head.

And yet, while the memory and heartbreak of this day never quite disappears, and I find myself replaying the moments of the day this is when we left this is when she told us this is when we came back home, I try to look at our January 20 as more of an Inauguration Day. 

Some years, that's much easier to do than others.

Today I find myself trying even moreso to grasp that gold ring of possibility that Inauguration Day brings. I find myself reflecting more than usual on all of Boo's accomplishments (and indeed, he has accomplished so much more than we ever imagined during our breakdown and the Black Hole era of seven years ago). 

I watched him this morning, on the computer laughing at a Saturday Night Live skit on YouTube (and reminding him and his still-present echolalia not to repeat a phrase at school). He'll go off to before care this morning, board a school bus, disembark and head toward his mainstreamed third grade classroom, make it through the day, play with E. and D. and J. at recess, board the bus again. On the days when I drop him off at school, it never gets old watching him hoist his backpack, cross the street with the crossing guard's assistance, and walk into his elementary school. 

I hold all these things close, every Inauguration Day and every other day.  And at the same time, I often feel caught betwixt and between, as is the case this year.

Inauguration Day 2011 comes at a time when we are caught betwixt and between so many things.  We're betwixt and between therapies, having made the decision to stop the social skills group therapy that is bankrupting us, barely reimbursed by insurance, and - we have finally admitted - giving us more satisfaction that we were doing something for him as opposed to change we can see (much less believe in).  We don't know what's next, therapy-wise.  We are headed into the unknown, in more ways than one. 

And so there is even more reason than ever to embrace (through the pain and the sadness, through the fear and the unknown) January 20 for what it is, now and always, no more and no less.

The inauguration of new beginnings, of pioneering our New Frontier, of the possibility and promise of putting a man on the moon or discovering life on Mars.

Of the possibilities and promise and potential of another year ahead.


Kelly said...

Thanks for sharing this, Melissa. Especially this...
"The inauguration of new beginnings, of pioneering our New Frontier, of the possibility and promise of putting a man on the moon or discovering life on Mars.

Of the possibilities and promise and potential of another year ahead."

We are working through some of this as we heard what we have long known on Monday, that our six yr old is likely on the spectrum (formal dx pending after more extensive evals.) and we expect to hear the same in a few weeks re: our oldest.

Niksmom said...

Oof. This sure packs an emotional wallop! But, the celebration of Boo's growth and progress is no small thing. It gives me tremendous hope that maybe, one day, I'll be writing something similar about my own son.

After all, inaugurations are about new hopes, fresh starts for all, right?

Melissa said...

Oh, Kelly ... I wish I had some more words of comfort for you. Such a tough time. Just know that I am thinking of you. Anything I can do, just let me know.

And Niksmom, my dear friend, you always do write such wonderful (and similarly spectacular) things about your boy. And indeed, yes, they are very much about new hopes and fresh starts.

Meg said...

Thanks for sharing such an honest and beautifully written pos.t

Elizabeth said...

You've written so beautifully here -- I think that you should think, next year, of sending it in to National Public Radio's This I Believe to coincide with Inauguration Day.

I imagine this anniversary will always be a heavy one for you -- I know that the day my own daughter was diagnosed with her seizure disorder is etched in my brain, and while it's been more than fifteen years and the pain is dulled down, it has never really disappeared. I so admire you for turning it on its head a bit -- and welcoming in possibility and promise and goodness.

This is a blog post that I'll remember always!

KAL said...

These anniversaries are bittersweet, aren't they? It does sound like there is so much to be hopeful for. Lovely writing.

Elisabeth said...

Sending hugs!

Alyce said...

This is an extremely well-written and thoughtful post. It sounds like you guys have done a wonderful job dealing with your challenges so far. I wish the best for your family and your son.