Yesterday, I noticed the press focus on a new series of tweets by Kumail Nanjiani. Although I follow fewer than a hundred actor-celebrities on Twitter, I’ve been cheerfully following Nanjiani for years. I’m thrilled for his success with the excellent film The Big Sick, especially considering he had to carve that out of a very personal place.
Digging deeper into that personal place is what got him some of this week’s headlines. (The cynical Oscar-watcher in me notes the timing, during the final week of nomination voting, but let’s put that cynic to the side.) The Washington Post’s promo blurb quoted him as saying (on Twitter), “So much of your entire being is spent trying not to think of the worst case scenario.”
Nothing against Nanjiani, but I believe that living with a child with severe autism is living with the worst case scenario.
My mother got sick, with cancer. For a while, it was all hands on deck. She had no spouse or other kids, so it was all on me. I persuaded the extended family and friends to visit her. Mom and I went to a series of doctors. Then, she died anyway.
I loved my mom truly, madly, deeply. Her dying was certainly one kind of worst case scenario. But her death also had a certain finality to it. (I say “a certain” because even 13 years later, I still sometimes dream that she’s alive, only to wake up to lose her all over again.)
With Dar, the horror never really ends. It gets mitigated, it gets compensated for, but it doesn’t end. I don’t have to elaborate this right this very minute. You have the elaborate, granular look at it right here on this blog, every week for four years.
We work on him getting better, and all the work barely does anything. We constantly worry about his future.
It’s Guantanamo, man. It’s worse than Nanjiani’s scenario. I love him but I believe it.
You might think: well, so, with all this stress, you must be numb to all pain, right?
Nope. No, I still feel it. And you know how I know?
I know because of Rainier, who, much to my surprise, went viral this week.
I’ve been keeping his name off of this blog, until this very blog post. I don’t know why. Superstition? I ought to apply the same superstition to expressing, here, how much I really love him.
But today I’ll admit it: the joy that I feel in Rainier’s presence is probably directly proportional to the sadness that Dar brings us.
I don’t like this truth, but that doesn’t make this truth untrue.
Rainier is more than a silver lining for us. He’s joy itself. He is the stereotype of a “sweet boy,” without a violent bone in his body, with love for everyone and a constitution perhaps too sensitive for some of the rougher kids. R has been reading since he turned 3, writing since 4. He’s already written books and songs! I could post them here, but this is Dar’s blog. And if anything ever happens to Rainier…I’ll be way past any emotion Nanjiani has been tweeting about.
The way R behaved in the viral video is actually a case of him “acting” young. Sometimes he wants to do baby-talk. I don’t know that he’s trying to connect to Dar, I think he just wants to “pretend” to be cuddly and cute. It’s a sign of intelligence, although if he were really advanced he’d know how cuddly he already is.
So, I don’t really think my behavior on the video is all that remarkable. That’s the behavior of someone who has lost all hope of a normal life, lost all hope of ever having a “normal” child, lost any kind of routine to disability and despair, suddenly getting that second chance. When that happens, the normal reaction is to savor and be grateful for every damn minute of it. That’s what you saw there.
They tell you to savor every second of parenthood, because it goes quick. That’s not our experience; Dar’s arrested development prevents some of these truisms from becoming absolute truths. But as I say…the video is what savoring looks like. Not a moment with R goes by that I don’t appreciate, truly appreciate, the staggering, stunning wonder that he is.
I know that’s not fair to Dar. I’m a little haunted by a moment in the book “Carly’s Voice” where Carly complains (I’m paraphrasing), “I know what my parents want me to be. They want me to be like my sister. But I can’t be.” Dar probably already thinks that, even if he can’t articulate it. And it’s not fair. Not even close. But that’s the way it is.
Part of the issue is that the squeaky wheel gets the grease. Whatever I have written here, at home Dar actually gets through many hours without screaming. Rainier rarely gets through more than five minutes in the house without saying “Daddy!” or “Mommy!” We’re human. We notice people who ask for our attention, who jump into our lap, who say “I want to be with you.”
But…loving Rainier is actually sort of a long-term strategy for Dar’s care. If everything proceeds according to the odds, Dar’s mom and I will be dead long before either of our kids. (This is just desserts for us for having kids so late in life.) There’s no certain way to make R take care of Dar after we’re gone. But I really believe our best odds lie with giving R unconditional familial love. Part of him should want our family together even after we’re gone. And that will hopefully mean that R will make sure Dar is cared for.
People ask me, does Rainier play with Dar? Well, not really. What can he do? You can’t ask Dar to toss around a ball or play hide-and-seek or play a game or anything else. If you try to point out things in a book, Dar pushes you away. So…in some ways Dar and R are both growing up as only children. As a once-lonely only child, that kinda breaks my heart.
In my darker moments, I see Dar like a ball-and-chain on R’s life. I know that’s not fair. (On the other hand, it’s also not fair that women/sisters/daughters are usually put in R’s position of caretaker while the men/brothers/sons go drinking with their buddies.) If I’m lucky, R won’t see it that way. Or at the very least, he’ll remember the package deal of his life includes familial obligations and his parents’ love.
The greatest privilege of our lives is to give love to him and to Dar. And like Nanjiani, we’ll do what we can to maintain that privilege.