Oddness

things I remember and things I forget

It’s odd to be lying next to Sophie on her bed, the moonlight slipping through the blinds. She is twenty-eight years old, and I am sixty. It’s odd that she has a hole in her neck, a hole that is no longer needed to breathe as she has a nose and mouth for that but, rather, a hole, a tube, that gives us access to her airway, to suction the mucous that she no longer has the ability — or at least as well as she used to — to manage. To manage her secretions. It’s odd how language defies meaning. To secrete. A secret. Something hidden. Her chin hits the cap of the trach, and I am obsessed with this. How can this be comfortable? Does it irritate her as much as it irritates me? The surgeon who put in her trach is not concerned by this. He is not so much dismissive as, rather, casual. I feel crazy.

There are things I remember and things I have forgotten. I remember the trach surgeon coming into the hospital room back in March to explain what he was going to do to my daughter, how the tracheostomy would go. Go, I thought. He is in his thirties, I think, now, and very friendly. He reassures me. She’s doing great, he insists. I can tell that he admires his handiwork. Yet. Yet, there’s her chin and the cap and the angry red mark on her pale skin that comes and goes. I still don’t quite understand just how and where that tube is placed. What holds it in. Is this right? I think. I am, faithfully, without trust in authority. When I clean the stoma I notice the scar. It’s a tiny twisted thing, a shell. I carefully swab it, file it away. Look straight on and then away. It’s odd to be obsessed about such things when sixty years on the planet have come and gone.I remember lying in bed next to Sophie’s father when she was an infant, newly diagnosed with infantile spasms, that terrible seizure disorder whose prognosis was bleakest of all the epilepsy syndromes, according to the one book I found on epilepsy in the bookstore in June of 1995. She was screaming in the little port-a-crib by our bed. We lived in a small apartment and had no room for a regular crib. We were giving Sophie shots of a hormone called ACTH twice a day. These were intramuscular and she was about twelve weeks old. Her face would eventually blow up like the moon, and her mouth would be blanketed by yeast. Side effects, the doctor said. Her legs were chubby, and she’d kick them as she lay on her back on the bed. I remember she was surprised every time the needle went in, her mouth a little o and the scream so urgent I learned what would become second nature — how to be alert, calm and dissociated. I was lying there next to Sophie’s father on a sticky summer night in New York City and the baby just would not stop screaming. I wasn’t letting her scream it out. I walked with her, back and forth, back and forth, back and forth. I lay her in the crib when she stopped crying, but the screaming started up again as soon as I got in the bed. I have since had two more babies, so I can tell you, Reader, that this was not the normal kind of crying, or even the abnormal colic of some unfortunate babies. I remember being obsessed with a word that the neurologist used. Irritable, she said. The baby might be irritable. I was obsessed with this remark and now, perhaps, even offended that a doctor would so easily dismiss something so chaotic and life-altering with a casual word. I remember sitting up in bed, obsessed with the word irritable and wondering if she actually meant tortured or dying. Perhaps the baby was was being tortured, was dying or would die.

I have forgotten what came next that night.

I remember many months after that when another drug made the baby make a dull, humming noise constantly. She was sitting, cross-legged, on the floor, I remember, in soft red corduroy overalls. She sat there and made that noise, I remember. I remember the doctor used the word irritable again and you have to see what you are tolerant of.

Years passed.

I remember the guy who came into our hospital room last March and demonstrated how to suction Sophie. I remember feeling irritable because I was tired and not ready to demonstrate my prowess. I didn’t want to learn how to do it like someone who hates math doesn’t want to figure out a problem. I remember feeling petulant. I hate these people I thought. I did it anyway. I remember a respiratory therapist who insisted that one day you’ll be eating a sandwich in one hand and suctioning in the other. He was right.

The thing that’s odd is to be obsessed, still, with what is, with what is remembered with what will be forgotten. Sophie is here, right next to me, and the moon hangs over our house.