Desperation on a Summer Night

A piece I wrote this past summer. It was a very desperate time. I still don't know what happened then; it's like Mendel was teetering on the edge and started to slowly slide that summer. It's not like he was making miraculous progress before; perhaps it was only the subtle shift from three to three-and-a-half that fueled this desperate desire for visible progress, but nonetheless, something, however slight, happened that summer. How? Why? We talk about this all the time but don't know the answer. The worst is that we were aware of it as it was happening and couldn't figure out how to stop it.

Here's what I wrote that summer night:

…So tonight, I get dressed up all pretty and drive an hour myself to a cousin's wedding. It's lots of fun and I can forget, for a few hours, the vacant stare that has haunted me for the better part of a year now and the surging, raging desperation that has become the dominant emotion my husband and I feel constantly. He is not doing better, he is not doing better, he is not doing better!!! Our son Mendel has autism, he must do better. Not doing better is doing worse. The clock ticks relentlessly. I'm always pretty vague about my kids' exact ages and usually need to do a finger count for a precise number-- but Mendel's I know perfectly. He is 3 years, 7 months old. He is closer to four than to three. He is not forming sentences. He will barely acknowledge his siblings. He is not progressing and we are desperate, desperate for a miracle.

Wedding fun over with for the evening, I'm thinking of all this as I drive home, down Flatbush Avenue, toward the Brooklyn Bridge. Stopped at a light, I see a wheelchair, in mid-street, propelling itself against traffic, and upon closer look- it's a black woman, one-legged, wheeling her wheelchair with one arm; the other outstretched to the car windows on her left. A white SUV pulls up fast into her lane and nearly hits her head on. She does not react at all, her face a plea as she looks up at each car, and then she is at my window. The light has turned green, cars are already honking. But good lord, I thought I had it hard! I feel nothing but pity and reach into my glove compartment for the one of the singles that are always floating there.

One bill comes up- it's a twenty. There's nothing else in there.

Now here is where I pause. Certainly I feel pity but I don't have a twenty to spare, and I never give twenties to panhandlers. I think of the bills-- and the grocery order tomorrow, and the doctor bills that have not yet been paid, and the personal debt that rises daily. I don't have a twenty to spare; I really don't.

But here she is- she's seen me fish around, her arm is outstretched, eyes lit in anticipation.

I roll down the window and give her the twenty. "Ohhhh my G-d" I hear her say as I speed off. "Ohhh my G-d."

And, appropriately, it's G-d I'm talking to right now as I turn onto the bridge and drive home. Because you see, G-d, I'm that desperate. Desperate enough to wheel down a barely lit street against the traffic. Desperate enough to do whatever in heaven's name I have to do to get my son back- if I could just drop all the other balls I'm juggling with no consequences and knew what exactly it was I should do. I'm not panhandling in a wheelchair but I'm that desperate, G-d- I'm that desperate!!!

And I gave that woman a twenty and it made no sense. Because you know, G-d, that I don't have it.

So give me a twenty, G-d. Okay? Just give me a twenty and let's get this thing over with.

A Lullaby

Here's what I like to sing to Mendel at night, if big sister lets me (she doesn't like the song). It's a song I remember from high school. I hit upon it one night while rummaging through my mental file of Songs I Like with my kids (they lie down, I sing; they get up, I stop). It is a song for Mendel.

Here it is, with my translations following:

Lo alekha Hamlakha ligmor

Lo alekha ligmor

Ve'lo atah, ben khorin lehibatel mee-menah

Ve'lo atah ben khorin

Sheyibaneh beit hamikdash, sheyibaneh

Bimheira byameinu, sheyibaneh

Sheyibaneh hamikdash

Lots of repetition there but I love the song so much I had to sing it out in words. The song is mostly taken from Pirkei Avot, a book full of grandfatherly life-wisdom and here's one piece (my own translation):

The work is not incumbent on you to complete it

It is not incumbent on you to complete

And (But!) you are not free to abandon it

You are not free

Those are the words from Pirkei Avot. The ending- a classic Jewish prayer added to the above lines by an inventive Jewish composer who clearly knew the thoughts of my heart as I lie in the dark room with my children at night, each with their futures ahead and none so uncertain as Mendel's- goes like this:

May the Temple be rebuilt, may it be rebuilt

Soon, in our days, may it be rebuilt.

So many nights I lie next to my children and sing these words and think of the journey ahead for Mendel. And I think: My darling little boy, there is so much work ahead of you, and it's okay- really, it's okay- if you cannot complete it all. You will do your best to join our world, this world, but if you cannot complete this work, my son- it's alright. It is not incumbent on you to complete.

But! And my voice gets stronger, more insistent- you may not walk away from it. You are not free to abandon it. It is your work; you may not turn your head away and laugh into your own mind or allow your eyes to glaze over, hearing nothing, seeing nothing of this world. It is your work! You must try. You are not free- we will not let.

And then, usually, my voice will break. Because we – my son, and our family, and so many others- we need a miracle. Sheyibaneh Beit Hamikdash- a prayer for redemption, for G-d to save us when all our efforts fail. This is what we need, G-d: Build his Temple and redeem us all.

And then I will end the song because big sister has had enough. And the moment is over, but the prayer goes on.

Be Careful What You Wish For

When Mendel was a baby- and the cutest, most strikingly beautiful, cuddly and adorable baby you could find- I remember looking at his face (I could stare at it for hours) and thinking how much I wished for him to stay a baby, to never grow up, to always be my precious and beautiful baby boy. I thought that no stage could possibly be as adorable, as delightful and wonderful as this.

Turns out that I was right. Mendel made a perfect little baby and a really cute young toddler but his mind was not catching up as the years passed and his body grew. Perhaps I knew this on some deep instinctive level, even when everything looked so perfectly fine. Perhaps I wished for him never to grow up and face a world he would not understand. I did not know it then, but as the months went on, in the chaos of my life, under everything, I did know that something was wrong, try desperately hard as I did not to admit it. When he was two, almost two and a half, I took my three children in the car to pick up my sister from the airport. She had been abroad on a study program; it had been a full year since we had seen her. In the car, I thought about the changes she would see: our sweet five-month old baby she had not yet met. Our oldest child, now a four year old big girl, bouncing in her booster seat with excitement as I drove. And Mendel. Mendel was a year and a half when she left, a sweet if slightly withdrawn baby. Now he was two and a half, and still!- I realized this in shock- a sweet and slightly withdrawn baby. Desperately I tried to think of the ways in which he had grown over the course of the year. His hair was longer, and more beautiful. He was taller, less chubby. Would he say her name? Would he say anyone's name? Was he talking? He was not. He had not grown. A year had passed; he had not grown.

So I say: be careful what you wish for. I wished my son would always be my precious and beautiful baby boy and here I am: he is now four, with full-blown autism, a beautiful, beautiful boy with skills not much beyond a baby's. My little girl, now two, has surpassed him months ago in language, cognitive and social development. The tiny seed of worry in my heart has grown into a full blown monster, worse and more severe than anything I could have ever pictured when he was two. When I look at him, I see my beautiful boy- but inside, the spirit is fleeting. He talks very little; he is in his own world and seems unwilling or unable to come out. He is adorable and sweet but at four, there's so much more you need to be.