Friday, March 17, 2006

Advocacy & Ability

As promised, here's the second entry to my new blog and my topics today include: Dana Reeve and BB King. This entry is being made a bit later than I had originally planned because the demands of new authordom have kept me slightly busy, but enjoying almost every second.

I can't even begin to put into words what it meant to me to see my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations, with son's face commanding attention front and center in the parenting section at Barnes and Noble. There it was on the top shelf, face out, under Children with Special Needs, in a major bookstore located across from a major university that houses one of the premier programs for educating future teachers in the country. Wow, that's no small impact on an author/parent/advocate!

I assure you that I am rarely a person of few words, something to which my adoring, tolerant husband can certainly attest (probably quite loudly), but seeing Eric's incredible, smiling face enticing the young and the old, the browsers and the eager, wide-eyed, and sleep-deprived parents, as well as the discriminating book buyer was one amazing moment. I stood there staring at it for so long that I'm quite sure someone was worried about my possible intentions (was I about to walk out with the latest autism title in my purse? Not likely). I'm still digesting this life-defining moment... chances are good I'll blog more about on another day, but not quite yet...

As I took the elevater to the street level and floated out into the crisp night air, I couldn't help but whisper discreetly to my level-headed accountant husband, "Do you think anyone in the bookstore recognized me?! His have-you-completely-lost-your-mind? glance back quickly brought me back to earth with a great big fat painful thud.

There is absolutely no chance of me becoming a diva in my own household--zero, nada, no way, no matter how loudly I proclaim just how tough it is to get published through the old-fashioned literary means (by that I mean not by self publishing)! Like Rodney Dangerfield, I'm having trouble getting some props here among my immediate family possee...

Overall, this was still a remarkable evening, one that also included attending a terrific concert with BB King, part of the 80th Birthday tour by the legendary King of the Blues. My spouse is a great fan; I was less so, until last night. The man is simply amazing, as is his band, many of whom have played with BB for nearly 30 years! He can't move as fast and, in his own words, 'he's got bad knees, can't see so good and has diabetes, but he can still work his one good eye overtime to check out all the pretty ladies!' He may be eighty, but his pure talent has lost none of its youthful edge.

BB King was funny, charming, engaging, belting out the blues like a Sunday preacher frantically trying to save more than a few ragged souls- and as if his livelihood, and his alimony and child support payments, depended upon it. As I listened to the words of this singer/songwriter/poet/guitarist extraordinairre, I realized that BB King has lived through civil rights, the assasination of the Kennedy brothers, and Martin Luther King, and many other dramatic, defining times in our nation's history, but his youthful spark still commands attention, as does his love for his music and his enormous musical talent.

When King relayed the stark reality of being denied the right to play at this kind of fancy venue with such a grand stage years ago, I was reminded of the struggles still facing many minorities groups in 2006, including for those with special needs.

In that moment, I recalled my son's special needs journey and the value of what we now share with other families and the world through Breakthrough Parenting...and I fought back stinging tears of unresolved emotion from years of my own frustration at advocating for my son in a world that still has trouble seeing the value of a child with special needs. Music moves us in such powerful ways.

I remembered the time we took Eric to see BB King on a sultry summer night at Interlochen in Northern Michigan, where Eric's love for the guitar became incredibly evident, even as the draining 90 degree heat took its toll on him. As he sat in that confining wheelchair, sweat running through his hair, Eric's beaming smile said it all--the guitar, the music, and BB King, were way beyond cool!

BB King may be 80 years old, but he is still a young musician at heart. He loves what he does and exhibits a passion and gift for living life fully. It's an example to all of us about how to go on living, no matter what heavy bolders might get tossed in your face on this often unpredictable life journey.

I discovered a renewed respect for my son and his own love and talent for music that night-- Eric was one was cool dude, too!

Which brings me to the final entry of this day, Dana Reeve. With the death of this remarkable women a little more than a week old, this week's media if filled with photos of her life and tributes to her amazing legacy. I want to add my own words to the mix, short and sweet and with my respect for this amazing woman.

I didn't know Dana Reeve as well as many, yet probably knew her a bit better than many others because of an in-depth interview I conducted with her for my book shortly before Dana's lung cancer diagnosis was announced. It was my honor to include this mom/caregiver/singer/friend and advocate in the final chapter of my book, along with an interview with Timothy Shriver of Special Olympics because of what I (and others) view as their signficant efforts contributions to the increased awareness of and life opportunities for millions of people worldwide with special needs. I hope that each and every one of their words of wisdom and fire and spunk will inspire millions of families and others to create better lives for kids with special needs.

Dana Reeve was one of those rare human beings who leaves a nation of fans mourning her death, along with a remarkable legacy from which we can all learn, much like her husband's. So my response to this enormous loss for the special needs community, and the world, is a bit of a battle cry for those of us left to solider on. All of us who care deeply about what Dana Reeve stood for and for the cause and population she and Christopher Reeve served with such passion and grace and commitment while facing tremendous family challenges, must continue the work that they, and others in the human rights field, began. We must go forward, as Christopher Reeve said shortly before his death, and his wife after he left us. And go forward we shall. We owe these two remarkable human beings at least that much.

You can help continue the tireless work of the Christopher Reeve Foundation and the Paralysis Resource Center (Dana Reeve's baby & an invaluable resource that recently lost its federal funding) at christopherreeve.org. One person CAN make a difference in this world, even under the toughest of circumstances. Dana Reeve and her husband proved that to the world, and so much more.

Now go hug your children! And make it a week filled with purpose and passion and actions of advocacy for the things in life that really matter, and speak up for all those other voices who too often remain silent. And remember to show a child that you care deeply about his or her future every day of his or her life. 'Cause they're our future.

Powerful thought, huh?

2 comments:

No Hassle Loans said...
This comment has been removed by a blog administrator.
Cash Loans said...
This comment has been removed by a blog administrator.