Lucky Girl

There are nights when I first lie down in bed that I wish it were morning already. That admission hints to a sort of optimism, doesn’t it? It makes me sound like I’m an early to bed, early to rise, tidy kitchen keeping, porch swing tea sipping optimist who can’t wait to take the next day’s tiger by the tail. Instead, it’s my biological warning system that tells me it’s going to be a long night of insomnia, of my feet being too hot and my arms too cold, of my mind already being smack-dab in the middle of tomorrow, of my feelings being too raw, all jacked up on the caffeine of worry. Worry about my son and whether he will sleep through the night, whether the long-dreaded, but no doubt inescapable seizure will strike, as he sleeps next to me. Or I am too conscious of my husband, sleeping or not sleeping in Noah’s bedroom, now my husband’s sick room that is starting to smell stale with lack of movement in the air, of his body. Nights like those, I can feel my heartbeat in my ears. (Zoloft has helped; I don’t have any problem admitting that, even aloud at the brunch table or during a meeting. And it’s doubtful anyone looks at me askance because it’s pretty well-known that if anyone needed some drugs to make it through the day, it’s me.)

Ridiculously enough, I consider myself a lucky girl. And that may be the true test of my inner optimist, but I’m not sure if that’s a result of my brain chemistry or my brain on chemistry. Still, I have few complaints despite my many challenges. If I skim through the pages of medical campaigns on gofundme.com, the community fundraising site, I know in my bones that it could be worse. That’s not just a cliché. There is one woman who has had the majority of all of her limbs removed due to a late-diagnosed case of Rocky Mountain Tick Fever. You can’t tell via the page her relatives created, and obviously I can’t ask her, but I assume she still wants to live, and that’s saying something.

Me, I’m astounded every day that I am someone with a story. Sure, everyone has a story. And I’ve always had a story to tell, about my own adoption, my surgeries, the deaths of my parents. But now I have the kind of story that can be donated to, and that meets the criteria for state assistance. (I mean, we have a freaking case worker! Don’t “other people” have case workers?) Our gofundme campaign earned $7500 in 5 days. The story is this: my husband has recently been diagnosed with leukemia. My son, 10 years old, has a seizure disorder and global developmental delays, and more relevant to anything, needs attention; he is not toilet trained, he would stop eating after 3 bites of breakfast, lunch or dinner, if we didn’t feed him, spooning food into his mouth, or hooking his G-tube up to a bag of non-food food. I joke that if there is something for him to run into, he’ll run into it.

Still he’s kind of a typical kid. Just a young one, for his age, cognitively a toddler, but with a will to do things he cannot do. He loves to swim, but can’t actually stay above water. He wants to climb to the highest point, but he doesn’t really know where his feet are when he places them on the rungs of the jungle gym. He loves the zoo, but his vision impairment prevents him from seeing the animals. He demands a lot of energy and patience. I joke (again with the jokes) that he is 1.5 children, so it’s a challenge to be outmanned by him when you are caring for him alone.

But here’s the deal: I’m not sure what I expected. What does anyone expect from life, when you have no idea who you will be as you age, or what will happen on the way? At some point you learn, if you don’t look too carefully at your sorrows, if you glaze your eyes over just a bit when giving them a stare-down, the edges are dulled and you can run your mind along them, like your finger on the blade of a knife, without feeling the cut.

Ad infinitum / Vigilance

Ad Infinitum

The first time it happened, we got out the books. Each one of them said this was likely to happen. Well, maybe not likely, but possible. Babies have seizures. They just do. Most of the time when there is a fever; and he had one. No one talks about it, but it’s more common than you’d think. That’s what the nurse in the ER told us after his second one, and his third. They gave us a DVD and a booklet. Our doctor told us her brother had had seizures as a child, and he was just fine. So we tried to believe we were normal. That what was happening was normal. That the panic was normal. Oh it was there, that fluttering bird, like Millay’s but with less hopeful feathers. But we talked ourselves down each time, like a negotiator on a bullhorn shouting to the suicidal that everything would be all right, that bailing out was not the answer, that we should just back away from the ledge. We convinced ourselves that as long as we didn’t panic, this very abnormal thing, this thing no one talks about, would move along. Nothing to see here but a dark cloud briefly obscuring the sun. The brain, like a hard drive, just needs to reboot sometimes. But after the next one came a CT scan and an appointment in neurology. It’s difficult to convince yourself that that is normal. Then the blood tests, the MRIs, the medications, the therapy, the special classrooms, the emergency phone calls. That time on the plane, already taking its place on the runway, and the pilot and all the passengers forced to return to the airport: that felt nothing like normal.

At no time in my fantasies about parenthood did I predict this sort of dissonance. Isn’t that why I took vitamins and said yes to those screening tests? A co-worker asked one day, “What, had you thought it was all going to be perfect?” And what do you say to that? No? Yes? Maybe? So we lived in a kind of maybe for a long time. That maybe things would be ok. That maybe babies grow out of these things, even though the DVD and booklet warned us that a child who has one seizure is more likely to have another, and so on. We would have to be watchful. We would have to be diligent. One of us would sleep with him at all times. We would keep our phones near us at all times. By the fifth, I suppose the likelihood of his having more had grown so exponentially I should have known then that the panic would soon find a place to perch, it’s tiny talons clutching on my aorta, its beating wings drowning out the beat of my own heart.

***

Vigilance

The night is quiet, the hum
of the air-conditioner in the window
is like no noise at all. I watch your chest move
rhythmically beneath the thin sheet, the sheet
pulled up over your thin arm, your arm
pulled up alongside your cheek. I can’t
see your eyes. Your small foot twitches again, against
my leg, and I stop, don’t move a muscle, don’t
take a breath, the quick rhythm of my heart
beats loudly in my ears. Slowly,
lightly, I press my leg against your leg and wait, wait
for the next rhythmic twitch, but the next
doesn’t come. I should reach over, put my finger
in the soft crook of your arm—at 8, still
more meat than sinew—, and slowly, lightly
pull your arm down from your cheek. I should look
at your eyes, see if your lashes beat rhythmically
against your cheek, a sight that sounds
an all too common alarm so quiet
you make no noise at all in the night.

Fireworks and Fossils

Tonight, we lay together,
my son and I, body to body,
his back on my front, and I feel
his weight as we watch
fireworks explode over our heads.
His hair, blonded by the summer sun,
tickles my chin, and his heels kick
my shins. With each bang,
we shout, “Whoa!” in competition
to see who can shout
the loudest. My son
who can’t say much at all
explodes with sound as lights
blaze above us, powdering
the sky with shards of color.
Tonight we lay together,
our bodies like sedimentary
rock layers. Split my heart
open and this night is
the fossil you will find.