By Julie Obradovic
If anyone were to ask me if I have any doubts about what my recovered daughter will be able to accomplish in her life, I would honestly say, yes. I’m cautiously optimistic about her future, just as I am extremely realistic about her past. I usually teeter between a space of profound sadness at what she lost and profound gratitude for what she didn’t.
Although I am most often in a state of gratitude, I do worry about her future. I’m not naïve about the obstacles she still faces, and I’m not dishonest about them either. The years are ticking by at an alarming rate, and issues that I had desperately hoped would be 100% resolved are yet to be such. Most of them are academically based.
However, if anyone were to ask me if I think she will live an independent, otherwise normal life, my answer would also be, yes. She will live and work independently, no doubt.
And likewise, were anyone to ask me if she will have true friends and date and go to prom and even marry, I would also say, yes.
Or so I thought.
An automatic response to a hypothetical, however, proved otherwise.
It happened over the weekend. My husband and I were celebrating our anniversary in downtown Chicago. While sipping a complimentary drink gazing out over the Chicago River, we fantasized about being able to live like the 1%. We were staying at the Trump International Hotel and Tower, where everything is and everyone has the finest in luxury. (Only a few minutes before we had stepped on the elevator with a woman who had just purchased a new pair of shoes since she had forgotten hers at home…you know how that goes, she laughed…just a nice set of Jimmy Choo’s from Nordstrom’s next door, only $850.)
We continued talking and dreaming about our next fifteen years, examining some of the mistakes we’ve made, relishing in the accomplishments we’ve had, and contemplating the lessons we’ve learned in the last fifteen. We planned our next major financial goals and discussed our distant retirement plans with excitement.
It was then my husband, the financial planner he is, casually remarked that he realized one of his spreadsheets was inaccurate. He had forgotten to include helping the kids with their weddings. He looked around and even suggested, semi-seriously, that maybe by then we could afford to have them here, at the Trump Hotel.
“Well, hopefully by the time (our youngest) is ready to get married twenty years from now, we will be able to,” I said half-laughing and raising my glass. One can dream, I thought, and I am always dreaming.
He looked at me, and then cocked his head. There was no smiling back at me.
"Why not Eve?”
His voice was defensive. The mood had suddenly changed. He was right.
Why NOT Eve?
I didn’t know what to say. I was stunned by the unconscious implication I had just made…that I didn’t expect her to get married. She’s the older sister. Why did I dismiss her?
I tried to make light of it. I don’t remember exactly what I said to pretend I didn’t mean it, but he wasn’t buying it. Nor should he have. For the truth is, I didn’t ever see her getting married. I had just never verbalized it…or really even realized it until just then.
We didn’t talk about it much longer. Grieving Eve was something the two of us had to do separately for a long time, and it was something that nearly broke us. We are both in a very good space now and neither of us intended to get into that discussion during our time of celebration. We moved on to something else pretty quickly.
But when we returned home, I couldn’t help but think about what I had said. In education we are taught that our students cannot and will not perform higher than our expectations. We know all about the power of self-expectation too. Ask most college graduates how they did it and they will say, “I never expected not to graduate.” In other words, it wasn’t an option.
Recovery for Eve was not an option for us. But I’m beginning to wonder if my expectation of what that recovery would lead to was not as grand as it should have been. When your child doesn’t ask you a “why” question until she’s five, you tend to define success in different terms.
My priority in recovering her was first and foremost her health. My baby was sick, terribly sick, and restoring her health was paramount. We did that.
Secondary was recovering her abilities. The ability to speak. The ability to learn. The ability to socialize. The ability to use abstract thought. The ability to make a friend. The ability to hold a writing utensil properly.
Not even on my radar was the ability to get married. Not only did it seem so far away, it seemed so impossible. And honestly at the time, so unnecessary.
I’m realizing now I need to redefine my goals for her. Perhaps I do need to move the goal posts. To dream bigger. To work harder. To achieve what was never on my radar. Otherwise, how do you keep moving forward?
I’m the first to admit, I’ve gotten comfortable. She’s so far beyond what we were told we’d ever have that I’ve apparently taken the position where we are is good enough. And in some ways, it is.
But good enough for who I now wonder? Have I started believing that being grateful for what we have achieved is incompatible with wanting more? That because we’ve come so far, I shouldn’t be well, greedy? Or is it worse? Have I just gotten lazy? I think I have.
Well, that’s the end of that. What a wake-up call. She deserves every ounce of what was taken from her. It’s time for us to move the goal posts.
I think about sitting in the swanky bar overlooking the Chicago River on that afternoon and reflecting on the last fifteen years of my marriage…what we learned and where we now want to head. How much our priorities have changed and how excited we are for the future. And how truly, when push came to shove, our marriage survived so much because at least in part, we never expected it not to.
It’s time to do the same for my daughter. Time to reflect on what I’ve learned and where I want her to head. How much our priorities have changed and how excited we are for her future. And how truly, when push came to shove, she got better at least in part, because we never expected her not to.
Married? At Trump Tower? If that’s what she wants?
From now on, I will expect nothing less.
Julie Obradovic is a Contributing Editor to Age of Autism.