“She’ll have a good life,” she said, reassuring me that everything was going to be okay.
The emphasis was on the good, not in a way that stressed “awesome” “great” or “fantastic”, but in a way that expressed “satisfactory”, “acceptable”, or “decent”.
It was meant to be helpful, I know. It was meant to remind me that things could be so much worse. It was meant to make me feel better.
It didn’t. In fact, it just made me angry…and then sad.
When I look back on my life thus far, I’m relieved to find that my feelings about it are overwhelmingly those of joy and gratitude. I have had a great life, I believe. In fact, I feel like one of the most blessed people on the planet. I really mean that.
It’s only when I really start to think about the tragedy that befell my daughter and our family that I begin to question it.
My child was poisoned. Her brain and body irrevocably damaged. Her life’s potential stolen. Her suffering and experience denied by those who caused it, the same people needed to fix it. Betrayed by our country and our media. Our marriage fragmented. Our lives cracked in half. The pain coming this close to breaking us. Breaking me.
Great life? Really?
And yet, the answer to that is still the same, beyond any shadow of a doubt. Yes, I’ve had a great life. One of the greatest I know.
For I have lived in Spain and danced in the fountains of Madrid and on the shores of Ibiza at midnight.
I have celebrated in Wembley Stadium with over 100,000 people singing in unison…including Prince William.
I have completed a marathon…in Alaska…while pregnant. And I swear I’m not making that up.
I have married and stayed married to the most perfect man on the planet for me, twenty years together this November, teenagers when we met.
I have excelled in academics and have never really had to work hard for anything…until marriage…and then Autism…and then marriage again.
I have the most loving, supporting, amazing, and hilarious family anyone could ever ask for.
I have had the same best friends since I was 7 years old, and we are still as close, if not closer, than we ever were.
I live in Chicago.
I have been able to use my favorite creative outlet, writing, to actually make a difference.
I have marched on Washington for what I believe in. Thrice.
I have stroked my children’s hair while I have rocked them to sleep, breathed in the scent of them as newborns just placed in my arms, and in those moments, have repeatedly experienced true, unconditional love.
I have learned what it means to be willing to die for someone if it would mean an end to their suffering, no questions asked.
I’ve had the privilege of teaching at two of the best schools in the nation.
I’ve been healthy and active, running and exercising my whole life without injury or difficulty.
I’ve learned I’m stronger, smarter, and more powerful than I ever could have imagined. And I’ve been really frightened by the responsibility that brings.
I have seen my favorite band in concert five times, and once, I even got chosen from a crowd of tens of thousands of people to sit in the front row while they shot a video.
I have been honored by Oprah Winfrey as one of America’s best teachers, showered in her “Favorite Things” on television (only to come home hours later and receive a diagnosis that would change my life forever).
And most incredible…she recovered.
I could write this list for hours, days perhaps. I well with tears just compiling it.
I am one lucky, lucky lady. I know this to the depth of my soul. There’s not a day or second that I take that for granted.
So of course, I want the same for my children. Good just isn’t good enough for me.
I don’t want them to experience an adequate life; I want them to have the best one possible.
I don’t want them to be tolerated; I want them to be treasured.
To go to the best schools and on the best vacations, and more important, to make the best friends they can.
To pursue their dreams and goals with all the enthusiasm they can muster.
To attack life, grab it by the horns, and savor all of these moments…like the ones where you find yourself splashing in a centuries-old fountain to celebrate a World Cup victory.
THAT’S what I wanted for my children. That’s what I still want for them. To love hard. To live hard. To play hard. To go after whatever they want with all that they have.
To be afraid of no one and nothing, and to take a stand on what matters to them most without caring what anyone else thinks.
To try and to fail. Repeatedly. And then win.
To walk along the beach holding their lover’s hand, soaking in the red sun as it sets beyond the horizon.
To kiss someone so deeply and so passionately that they are momentarily lost in space and time.
To laugh so hard with their closest friends they can’t breathe…every time they are together.
To make my life look boring.
This is what I think of when I think of what it means to live. For me, this is at least in part the definition of a great life.
Am I grateful my daughter has recovered to the extent she has? There are no words to express how much so.
Am I grateful for how much more of life she’ll get to experience than most who shared her fate? Ditto.
But am I devastated by the limitations it has left her with? Is a “good” life really good enough? Is that what any of us really wants for our children?
Not me. And I don’t care who hates me for saying it.
What was robbed from my daughter and those like her cannot ever be replaced. How do you measure friendship? Inside jokes? Piano recitals? Baseball games? Solving a math problem? Going on a first date? Winning a race? A homemade card? Getting an A? A college acceptance letter? Insight? Intellect? First love? Sleeping through the night? Health?
You can’t. You just can’t. And there is no amount of time, comfort, apology, or money that can ever, ever make it better.
In fact the only thing that ever really comforts me as she struggles to remember simple things and handle the increasing demand of academics she just can’t understand, is this:
Yes, her life may be good, but most important; it was for good. In a way that I cannot perhaps ever understand, and even if I do, cannot perhaps ever accept.
For she is here to teach us. To warn us. To show us what happens when we put profits over lives, fear over freedom, and ego over truth. To remind us that when you know better, you do better…something humanity must learn quickly before it’s too late.
All of our little canaries are here with the same message. Mine is not unique.
Still, I admit it; I wanted her to myself. I’m sure she wanted her to herself. The world took her as theirs instead. The ultimate sacrifice for a child and parent to make, without even being asked.
But maybe, just maybe, because of that…or even in spite of that…her life and those of the children like her truly are and will be greater than I could have ever possibly imagined.
I certainly hope so. Because those are words I think I can actually live with.
Julie Obradovic is a Contributing Editor to Age of Autism.