Like many parents of adult children with disabilities, I find myself veering between feelings of hopeful, radical amazement, and devastating sadness. I try my best to land on the more optimistic side of that divide, but I don't always succeed.
Luckily, the astonishing visitor from a galaxy we will never fully know--the man-child we call Noah--manages to lead me to that better place with increasing frequency. That's because his ability to share snapshots of his interior life--and to just share period--has increased exponentially in recent years. This has turned what I touted to my husband as a matter of maternal belief many years ago into a core truth, namely that there is so much more to Noah than he can share with us. I even took the bold and un-humble step of declaring him brilliant. Why? Well, just imagine what it takes to live in a world that is an utterly confounding mystery to you, day in and day out, and still to get through it, inspiring along the way love and laughter in others, and exceeding everyone's expectations (except maybe your mom's) of what you can do/know/come to understand. What is brilliance, if not that?
And still, Noah finds ways to surprise and amaze us. And those ways are totally unpredictable, so they land like proverbial lightning bolts, hitting his father and me with a thunderous, wondrous clap. Just days ago, we were in the car with Noah, heading upstate for the weekend. And out of the blue--yes, always out of the blue--he asked: "What happened at Sara's bat mitzvah?" Sara is my niece, who is now twenty-five years old. "I don't know, Noah. What happened?" "I had a big crush!" "Whom did you have the crush on, Noah?" "I had a big crush on Maya."
Noah has known and loved Maya for more than half his nearly twenty-eight years. She was a lovely, neurotypical classmate of Noah's starting in elementary school. She was kind enough at one point to come with Noah and me to the Hall of Science in Queens, a playdate of sorts that I could imagine no other typical classmate agreeing to. And clearly, Maya has held pride of place in Noah's heart for a very long time.
I had no idea that Noah even knew what a crush was, much less that he could describe it to us in such perfect terms. Noah has a beautiful photo of him and Maya from a bar or bat mitzvah they both attended--possibly my niece's, but maybe not--sitting on a shelf in his bedroom. She is a sweet, smiling blond girl. And with their arms around one another, he is the happiest looking redheaded boy you've ever seen. Which is why knowing that Noah has quietly kept loving Maya all these years is both gorgeous and heartbreaking. Which is kind of Noah in a nutshell.
Not to leave the weekend on that note, Noah wandered into our bedroom at some late hour on Saturday night and came up to me excitedly announcing, in a kind of whisper-shout, "Stars!" I got out of bed, followed Noah into his bedroom, and peeked out the window as he must have done. "Yes Noah, I see the stars. They're very beautiful, aren't they?" I kissed him goodnight again, and went back to bed. But not before telling myself that a man-child who looks up at a pitch-dark night sky and is moved by the beauty of stars is a blessing wrapped in a gift wrapped in a mystery covered in angel dust.
Nina Mogilnik worked for decades in non-profit, government and philanthropy settings, doing work she believed did some good and no harm. She moved with her family from the suburbs to NYC after her autistic son graduated from high school at age 21. She continued to do some work remotely, but then realized that her real job needed to be (re) constructing a life for her son in his new home and city. She continues to write--as a blogger for The Times of Israel, for Medium, and occasionally for other publications. This is how she records/accounts for/shouts about/expresses and otherwise communicates the challenges and joys of living a complicated, sometimes heartbreaking, but always true, life.