I would like to say something nice about my last ex-wife.
You know, the one: Stephanie Blatt. The green-eye She-Devil from the other side of midnight. The reason G-d made bourbon. The living proof that exorcism doesn’t work.
And I’ll get to it in just a moment.
Because first you need to hear about Rick Stein, a real estate investor, and his wife Roberta, who has long been a teacher of students with special needs in northern New Jersey – not far from where they live.
Their older son, Adam is 31. He suffers from one of the many forms of autism which strike about one in 88 people born in recent times. And nothing comes easy to him. That is, unlike their younger son, Robert, 28, a gregarious young man who has a successful band music business and is about to get married to a ‘beautiful woman’, who happens to have a brother who is somewhat challenged like Adam.
Rick’s story punched me into a corner. It is, in some form and fashion, my story, and Stephanie’s story, and some of my friends’ stories, and the many thousands – and hundreds of thousands — of other family stories with children who must struggle and fight and despair as they desperately seek their place in the so-called normal world.
They simply despair to find an accepted place among those who simply don’t have a place in their time to embrace them.
As Rick Stein related: “It rips your heart out.”
Indeed. But as I found it is only after it has ripped out your eyes so that you can’t see what you see in other people’s eyes. Or hear what you hear from other people’s mouths. Until all that is left is half your heart with the lingering hope that tomorrow you’ll awake to find that your prayers have been answered.
Some 25 years ago Rick’s wife, Roberta, changed careers in order to become a special needs teacher and advocate not only for Adam, but for the many others who have gotten lost in the system. Many of them remain in her teaching care until they are 21 – principally because there is nowhere else for them to go. And with our country’s growing fiscal crisis, ‘nowhere’ may be as good as it gets.
Rick said there is only one college in all of America, Beacon College in Leesburg, Florida, which focuses its curriculum for those with learning disabilities. And that Adam loved it there, earning a degree, and finding people with similar problems who became friends and easily accepted him.
But those wonderful days of college eventually move on. And the real world, with ambitious people and families racing to move on with their lives, smacks us in the face like custard pies heaved by clowns under the Big Top.
And the noisy sounds of life by others fade quickly into a cacophony of silence and loneliness for many — like Adam. He works at a non-challenging job. But mostly he stays in the house where he still lives with his parents.
One day he solemnly told his father: “I take pills for everything. But there is no pill for loneliness. I need a friend. I want a girlfriend…”
In other words he needs and wants to be like his younger brother, Robert.
And this rips the heart out of his father, whom I bumped into one day during one of his cloudy moments while the sun shined brightly outside the window in the door. He was slumped into himself, having a private moment. He was perched alone. Smoking one of his occasional cigars. Nursing one of his occasional drinks.
In our tentative, desultory conversation of sports and life he got to talking about how amazing his wife is.
“I couldn’t do what she does,” he said, blowing a long exhale. “Each night she talks of the little successes…the progress…she has with those kids. I don’t know how she continues to do it. Especially with all the setbacks.”
What he finds most amazing is that she is still such an advocate for them. Naturally it began where all activists begin, where all politics become local: at home. With a very young Adam. Without her and others like her, where would Adam be today? Where would the others be?
And the tortuous question is: Where will they be when all the Roberta’s are no longer there to campaign for the powerless?
This got me to thinking about what a wonderful advocate my former wife, Stephanie, has been for our congenitally ill and challenged son, Zakki.
But it came at an exacting price to our family. To our older son, Hanz. And to me.
She wouldn’t let me in. She wouldn’t hear my words. Or allow Zakki to see life through my more wide-open eyes, which as a journalist and adventurer have been steeled to so much more than her much younger, pristine years could ever fathom.
And as time passed there just wasn’t any room for me at all. Both of us just ceased and desisted.
Now, from afar, I am left with the worries for Zakki that eat a father alive, until the worms will eat me dead.
There is no right answer. But we embarked on this adventure as a family. And now there is no family. It’s not to say that Stephanie was wrong. She is very good at what she does for Zakki. In Rick’s words: She can be absolutely amazing.
But as a father I sought to prepare him not only for the here and now, but the later, when the world can get awfully cruel and lonely.
Like it has for Adam.
“When I talk to parents who are totally consumed with getting their preppy child into Princeton I want to smack them,” Rick told me. “I want to shake them. Make them aware. To be thankful that they have a healthy normal child.”
Normal? I don’t even know what that means any more.
Rick then noted that when Adam sees a paraplegic or someone seemingly worse off than he is, he is thankful. Much like the man with no feet who cried until he saw…. Well, you already know that sad parable.
Adam simply consoles himself with that passive platitude that ‘things could be worse’, like they are for Zakki, about whom I didn’t share much about with Rick that day. But, then again, on the other side of the rainbow, as my brother-the-doctor used to retort to our dear ol’ bourbon sippin’, pessimistic Pappy: “Things could always be better, too.”
I guess I have become much more philosophical in my aging years: For better or worse — life is life.
Rick and Roberta and me and all the other folks out there may sometimes strap on our kneepads and fall to asking G-d what we’ve all begged to know: Why me? Of all the things in this life why has this child happened to me?
And, of course, as the old proverb responds: G-d gives us burdens, but He also gives us shoulders.
And dats yDrewIS on DIS penal colony…