Last Night

 

The Mother Bed

Last night I put my arms around him as he lay in bed, eyes on his tablet, knees pulled up to his chest. Such long legs, getting thicker by the day, but I can still see his baby self in his skin. I’ve given him his seizure medications; I’ve washed his GTube insertion, applied Desitin, a square of gauze. I know I should tend it twice a day, but once is all the time I’ve got. I’ve dosed him with Melatonin in hopes he sleeps the night away, no tossing and turning, no cries in the night, no hours of wakefulness that have come in swaths since he was an infant.

We still share a bed even though he is eleven. You may find that inappropriate. Certainly some people do. Sure, he hasn’t had a seizure in a year and a half, thanks to the nutrition via his GTube we assume, so maybe he’d be safe on his own, but how can I know? Always our bedsharing was a necessity born out of fear. His seizures most often happened as he moved between levels of sleep. They were silent and too long, not violent and quick as most people imagine, as is often shown on TV. Instead, he just grew stiff, unresponsive. While I’d have loved to believe some kind of inner instinct would rouse me to some unusual silence across a hall, real life doesn’t often work that way. Otherwise there would be no death by middle-of-the-night fire, or while-they-slept burglaries, or children who go missing as though taken in the rapture.

What about your husband, your marriage, people ask me. And maybe I can’t explain that this is not a zero-sum game: both of us benefit from our son staying alive. The fear of SUDEP, which sounds like a cold medicine, but is how people with epilepsy sometimes die, still lingers. I have always been afraid that the one time I look away, he will suddenly disappear. Not his body, but his life. Evaporation. Ether. One time he had a seizure and I was alone with him and his lips turned blue and he stopped moving entirely, and that’s a thing that happened, and reason is no match for memory.

So bedsharing became the default, but is now a necessity because I fear the exhaustion that switching him to his own bed will bring on. When he wakes up at night, he wants a comforting hand on his back. Or a change of clothes if he pees through his night-time pull-up. Or for help finding his comfort blanket. I have grown better at falling back asleep after such disruptions, but rarely do I get a full night. When we begin to train him toward some additional independence, surely I will get even less. You may think that’s selfish, but eleven years is a long time to be tired, and sanity is a commodity I’ve learned to hoard.

I told someone today that I’d never had a driving need to be a mother, and the decision to have a baby had been more strategy than longing. On the verge of thirty, in a happy marriage with a man who deserved to be a father, I asked myself this: on my death bed, what I would regret more, not having children or having them? The answer seemed clear at the time, and so we did. (Before you ask me, we stopped at one, because he has been enough work and worry for two.)

When I hear stories of women who suffer due to childlessness, I can’t find a way to put myself in their shoes. When I hear women celebrate motherhood, they are speaking a language that sounds like my own, but the meaning gets lost in the distance between their mouths and my ear. I have a friend who has prosopagnosia, the inability to recognize faces, and that seems as good a metaphor here as any. It’s like I recognize the individual features of our common experience, but I can’t put them together to form a picture that is identifiable to me.

Simply, I don’t know what it’s like to be purely glad to have had a child. I sound cold, I know. But I can’t claim joy at having brought a child into the world who will struggle as mine struggles. That would require me to go to great length of Pollyana-ish denial, and I have far too much guilt for that. Yes, I am a better person. More compassionate, more selfless, more multi-faceted. And yes, he perfect in his imperfections. And I do often wonder when thinking about belonging, about helping him find a place in the world, if our culture is more the problem than his disabilities are. Sometimes I try to challenge people in rethinking the way they think about seizures, about special needs, that euphemism I have grown to abhor. But I would trade all of those personal gains, all of my drop-in-the-bucket activism, for having given life to a child who will be able to talk, to read, to shop, to drive, to work.

You see, I am ambivalent about being a mother, and as my child grows bigger but doesn’t truly age, I expect my feelings to remain complex on the matter. But after years of chastising myself, I now know this: it is possible to hold these two truths in my heart at the same time. There is nothing I love more than this child who I would never have decided to birth had he not appeared to me and bade me love him, like a stray at the door whose scars and ferocity are a lesson, not a reason to send it back in the rain.

I love my son most when we are quiet and I hold him in my arms and my heart, and the ache of loving him burns through me like I’ve downed a tequila shot and eaten the whole lime both. That’s not very romantic, but the visceral rarely is. Motherhood rarely is. For me, it is still poop and drool and too-sharp nails and sometimes bites and lots of embarrassment over his public behavior, and always, always, tiredness. My pride cringes as I tell you we still share the same bed. But I would take a hundred more years of all of those struggles, ironically to outlive my child whom I have always feared would die, because I have never been so afraid to leave someone I have always be destined leave.

 

Charades

Sometimes it shocks me how much other children talk. I’m just not used to how much little kids can say with their high little voices, bulleting out words, often so stream of conscious and unrelenting as to wear me out just to overhear. Today, I am struck by this in a public restroom. When I picked a stall next to one housing mother and child, and the child is talking all through the whole procedure of peeing, it astounded me. My 11-year-old son doesn’t yet pee in toilets, dependent still on training pants. (I worry he needs more disciplined parents to get him over that hurdle, but oh lord how we have tried.) But he also doesn’t yet speak. At least not in a way you would call speech.

Certainly he doesn’t talk like this little girl in the stall next to mine. She talks about the pee on her leg, and the amount of toilet paper she would like to use, and how cold the snow is when she doesn’t have her mittens on, and how she would like pink mittens please. Her mother reminds her that her mittens are pink, and she replies, “of course” in a way that is clearly mimicked, but also makes her sound world-wise and somehow forgetful.

When Noah notices a color, he says “yellow,” which means “color,” but also might mean “yellow” or maybe “blue.” Yes, he says “tired” and “no tired” and “up” when he is sleepy or not sleepy, but that’s about as revealing as when a dog sits by the door wanting to be let out. This may seem ridiculous, but when we first learned that Noah might never talk, I thought I might be ok. Worse things, right? After all, we’ve owned dogs for years and I’ve had fruitful and loving relationships with each them. Hardly. We only want from dogs what they are able to give. We want more than companionship from a child. With a child, we want to see ourselves. We want proof that everything we put into him has developed his inner self. Then we want to know that person. It’s a gift to know your child, for your child to give you more than you gave. This life? This life, well, it’s more like living in an echo.

Noah calls himself “No-nah” or “No-no” depending on the day, but he cannot say his own name. Can you imagine? Eleven years, and you cannot say your own name. Nor has he been able to learn to say 3 words in a phrase that might shape a concept for us to grasp onto. If he has an imagination, I don’t know what he daydreams about. I don’t know if his stuffed animals have names other than “bear” or if he could parrot a conversation between two adults in that way of not understanding context that kids have. “Kids say the darndest things” and “out of the mouths of babes?” Oh well. Why long for something that can never be had?

Still. What would it be like to have a child who talked? A child who talked about nothing and everything? Whose brain, whose daily life, I could have some access to? That’s the hardest thing: to not ever know anything about this child beyond what I can witness. Sure, parents are all bystanders to our children’s lives, but what if he could give me access to his thoughts, his dreams? When he wakes up crying in the night, I do my best. I guess it was a nightmare. Or maybe he feels sick? But I can’t know. When he falls, I try to detect where he was hurt through trial and error–“Is it your foot? Your toe? Your leg?” while he points to his mouth which he obviously didn’t fall on–, but it would be that much easier if he told me what hurts. No, not easier, it would be…more like mothering to know what my child feels when he feels pain. Then I might know how to fix it.

People tell me I know my son better than anyone else. And while I suppose that’s true, it’s also the farthest thing from the truth. And very little comfort. I don’t know him, because much of what I know is what I tell myself, not what he tells me. Sure he can ask, “Why?” or say what sounds like “What job?” but might be “What’s that?” But it’s not like he can tell us a story about something that happened at school that day, and ask, “Why did that kid do that?” or “Why do they always serve Fruit Loops for breakfast?” or, “Why can’t Ms. H be my teacher forever?” The list goes on and on.

Can I understand what little he can say? Yes, a lot of the time. Certainly more than other people in his world, even those who love him best. I can reinterpret his utterances, his hand motions, his defiance. I can translate his few words into concepts others can grasp. When we are walking through the grocery store, and he points to a stock cart, and says “truck” in that way he does, and looks at the stockboy with a smile, I can explain, “He loves carts.” But when I think too much about it, about his inability to communicate with people other than me, the limits of how much he can explain, declare, ask, prevent, well, I go a little crazy. Someday he will be 50 years old and I will not be alive to translate for him. And who will protect him then?

It’s lonely for me to be with him, and I wonder if life is lonely for him too. I wonder if he has all these pent up words that he really wants to say, that would spill from his lips if his brain could speak to his mouth in a way that produces words. When I ask him how his day was, and he gives me the ‘thumbs down,’ I can’t know if he is thinking over his day at school and truly assessing it, or if he is only thinking about the last thing that has happened, or if he is being silly and saying that the day was bad when in actuality he doesn’t have the deductive or summary skills to know. So I guess in one way it is good that his brain is pretty limited in its cognitive ability too. Maybe he doesn’t wish to say more because his brain doesn’t really produce more that he desires to say.

But somehow I doubt that. Maybe he doesn’t have much to say, but I’m pretty sure that if his mouth and lips could form “I don’t want to go!” or “Can I have ice cream?” he would like that too. Even if he can never tell a story, I suspect he would like to tell a joke. And I suspect he would like to ask your name, say “Good morning,” ask for pink mittens. We introduce him to other methods of communication– ipad apps, sign language, push button ‘talkers’–, but he’s so singularly interested in speech, despite the struggles, that it is his default. He tries, we try, and all we can expect is to get somewhere close. There is no target beyond almost.

I’ve likened life with Noah to an unending game of Charades. That seems uncharitable, and of course minimizes the gravity. But maybe because I need it to. He produces sounds, and then it’s our turn to do the work. We offer him options and wait until we hit on one that makes him nod his head yes. And just like the game, we cheer when we guess correctly; we may even smack the sides of our head with an open hand, and say, “Oh duh,” because it has taken us so long to figure out he wants peanut butter, not butter, on his toast. And then Noah too echoes, “Oh duh,” and laughs at our stupidity, like he’s never expected us to understand him, like he’s any other child who thinks his parents are barely tolerably intelligent. And then, very likely, he will not eat the peanut butter toast, because that totally was not what he meant. But how were we to know? It’s a game we can simply never win.

The Only Way Out is Through

I am finding joy
in the little things again.
A jar of spice,
that pungent powder,
from a specialty store,
two spry puppies rolling
in a social sparring,
a truffle of dark chocolate,
cool line of liquor
flooding my tongue.

I am finding joy
in his crooked finger
straining upward, pointing
to the waving leaves and limbs
of trees, to boats bobbing
in the lakefront marina,
to the eighteen-wheeler sliding
past us on the freeway,
to the wedge of toast hidden
beneath pale yellow eggs.

I am finding joy
not in the measurements
or accolades, nor the “whys?”
and wants, nor the precociousness
of a typical toddler.
I am finding joy in him,
he who deserves
to be celebrated
as a joy onto himself.