Sunday, January 20, 2013

Our Inauguration Day, 2013

Fireworks display here in Pittsburgh, December 2010
Photo taken by me

Today is what I've come to refer to as Inauguration Day in our family. It has everything and nothing to do with the goings-on in Washington D.C. 

Rather, today is the 9th anniversary of Boo's autism diagnosis, the day that a cold-hearted doctor declared that our beautiful boy had "clinical features of autism spectrum disorder" and "couldn't tell us what would happen with him," thereby changing our lives forever.

For three years now, I've written a post on January 20 - my own State of the Autism Union in this house, if you will. (Inauguration Day 2012Inauguration Day, 2011 and Book Review (Kids): My Brother is Autistic 1.20.2010). 

It usually goes something like this: 

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 when the country welcomed President John F. Kennedy on January 20, 1961, with promises of New Frontiers and Camelot. And hope prevailed again, 20 years ago today 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 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 very moment, you have time, but not much, not much at all, give me a call soon) 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 the spirit of what Inauguration Day should be: a day of looking ahead, of celebration, of coming together, of promise and of hope.  
Some years, that's easier to do than others. 

Today's one of the easier years. The Husband's cancer treatments have taken the focus off the looming anniversary, and I'm oddly grateful for that. In other years, we've been distracted by new jobs and moving and being on the cusp of  inaugurating a new life. I went to church this morning - for the first time in several years (that's another post altogether) - and it took me until the middle of the service to remember what day it was.

But, as I wrote last year, if I've learned anything during these 9 years, it is that we always need to have a spirit of forging ahead, of always inaugurating and embracing the new and what comes our way because ... well, that's what we have to do, isn't it? Otherwise, the worry and the uncertainty about the challenges ahead will win - and will squelch the surprise and delight that comes along with the remarkable accomplishments and strides. 

It's true for life in general, not just this autism thing. 

I've learned that the road is always changing and our GPS is often unreliable and unpredictable. That's certainly been the case in many ways - not just autism related - this year. Which is why this year is going to see some changes, some breaking out of our comfort zones, trying new activities, meeting more people. 

Inaugurating new things. 

("Inauguration Day" is the tentative title of a memoir I'm writing featuring personal essays - both those published here on the blog and those previously unpublished - on raising a child with autism.) 

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1 comment:

Lisa Gradess Weinstein said...

Boo has come so far Melissa - sending love! Lisa