It will probably be the last time. We have been doing it since she was 3, every spring. Her with the stickum and wires on her head, sitting in a hospital bed, plugged into a machine that watches her brain. The room is also rigged to record sound and vid. No privacy-- well hospitals don't offer that.
So her on the bed, moving up the years, from coloring books, to 'real books' to her kindle, her laptop, her never-without-it phone...
And me, in the reclining chair beside the bed. She is on a wire long enough to reach the toilet. She cannot go further. She is to sit still and be monitored for 30 hours or so. I am the one who gets snacks, who stays with her to ease the boring hours along. I am, at least this last time, the mom.
(I mean I know I will always be the mom, but next year she leaves peds. She will be expected to stay alone after that.)
I have spent hundreds of hours in hospitals with her-- after seizures, at appointments, and for tests. When it comes to medical settings she is a champ. By the time she was 6 or 8 she had a ranking system set up for the food in hospitals. (Most of it is bad, bring hot sauce...) By the time she was 5 she could stick out her arm for a needle and hold it steady and thank them when they were done. I don't know anyone tougher.
I can read nothing from the jagged scribbles of the EEG machine. It jumps when she yawns or chews, or speaks. Or listens. Last time she used it to entertain her friends-- she would speak or eat and they clustered around the machine giggling-- she got laughing and the squiggles went dark and dense. (This time we were trying to see if she could come off her meds and do it safely.Answer is no, meds for life, but they work at least. And I am not letting myself think about her outgrowing our insurance...)
So one last time to enjoy the moment. She is well. She has grown into a young woman. She is old enough to keep herself safe. That is what I prayed for in those hundreds of hours. This. This. Her eating fried chicken and doughnuts on a bed that costs as much as a car, me curled close on a vinyl recliner.One last time to sleep beside her, and listen to the beeps and quiet voices and the not-quiet, never quiet.
TV was having a marathon of Harry Potter movies. So I watched those other children grow up in accelerated time. I wonder how their mothers feel?
Every night almost, now, I am on the same train at the same time to Stillwell ave. I am one of those hopeful looking people panting up the subway steps, to catch a particular car. And I see the same people doing the same, people who have lives that synchronize with mine. I have made two friends, so far. One is a friendly woman about my age, who texts with me about Trump and bra shopping. We have plans to go to protests together, to go to the beach.
My other new friend is a little more mysterious, evocative of the past for me. I do not yet know his name. (It is not the sort of thing that one can always just ask.) He is, I would guess, 3. I see him, every night, bundled into his heavy coat, a serious black coat meant to last the winter and beyond. It has room to grow, it is down to his knees. When he is done with it, no doubt it will go to his sister-- who is a soundless wrapped bundle in the stroller. Their mother gets off at Stillwell too, so they ride with me all the way. She is limp with exhaustion, her dark brown face slack, She leans against the wall, boneless in her own heavy coat. Her hand is on him, making sure of him, every night. Her foot is against the locked wheel of the stroller. But she forces an eye open every night, to check on him, to check on the baby. She can doze but that is all.
Most nights he is asleep against her side. Most nights he is so out that she has to steer him when they leave. Small child's sleep is flexible, he walks at her instruction, with his eyes shut.
But last night he was awake. I sat down next to him. He was playing some game with his hands, pretending, making that little voice that little kids make when they are doing characters. I think I must have made my near hand a character too and said something in that 'nnnr-nnr' not really voice.
"I think you should take me to Chuckee-Cheese," He said. "We would have fun."
"You like Chuckee-Cheese?" I said.
"It is my best place!" His fingers spread out stiff with excitement as he said this. His mouth opened in a big smile, showing all his baby teeth.
"What do you like about it?" I said.
This was too much-- he shook his head, eyes wide.
"I bet I know," I said. "You like the games, and the lights, and the pizza, and you can run and make lots of noise?"
His mother opened one eye, wearily. She gave me a slight nod.
"When I get home I am going to eat lolipops!" He said. This did not seem likely.
"Lolipops are great," I said. "But more for the middle of the day. At night they make your teeth all sticky." His mother gave a slight smile.
So we talked, a few more minutes, and it was time to go. He held his hand out to me. His fingers made a curved shape in the air. I held my hand out cupped. He set the imaginary something into my hand. Not knowing what he intended, I ate it.
"It is a blessing," he said. "It tastes like bananas."
Tonight I may ask his name.
I am reading a book about the formation of empathy in kids. It is talking a lot about the limbic system, and mirror neurons, some of it I knew already, but much is new.
The book talks about the feedback loop that happens when we hold or feed a baby, how they light up when we come to answer a cry, and we light up in return when we take care of them. I remember it so well-- even when I was half crazy with fatigue, how my kids would wiggle all over when I appeared. This is the beginning, according to the book, of our formation into creatures who can trust the outside world, and have real relationships. If things are askew at the light up and wiggle stage, there may be trouble later.
The book says that when we see something happen to another, something hurtful or joyful, we have a response in our physical selves, the mirror neurons fire to allow us to feel it also. We have known this since long before brain scans of course. Here is a quote from the 18th century:
'By the imagination we place ourselves in his situation, we conceive ourselves enduring all the same torments, we enter as it were into his body, and become in some measure the same person with him, and thence form some idea of his sensation, and even feel something which, though weaker in degree, is not altogether unlike them.'
Oddly that is Adam Smith, the economist. And he has it just right. The mirror neurons do give us the feelings of another, and they are indeed 'weaker in degree.' (Don't you just love how the enlightenment people were so unafraid to scatter their learning wide? A little poetry, a little math, a little flower picking, some metallurgy, not like now when we are limited by what we think we are.)
And it reminds me-- just after Hazel died I had an interaction with three little girls who live nearby. They were perhaps nine years old. I was outside and they came and asked after her. One came closer than the others, the speaker for them all. She had a plastic hula-hoop. I answered quietly that when we took her in for the broken leg she had turned out to be much much sicker than we knew, and that was why her bones broke, and that she had died. The little girls face wrinkled.
"Yes," I said
"So... She is all the way dead?"
And the child looked at me. She put her hand on her chest where her heart is, over her flat little girl chest.
"I feel your pain inside me as if it were my own," she said.
Wow. That is what the book is on about.
My hometown has a local paper. It is full of the news of the people who live there, It is a good little paper, it tells what to plant, who needs help, when the high tide will come, or the snow. It tells about church bake sales, and new babies, all of that.
It is insular in the truest sense, I come from an island.
I read it online now, and rarely. I tell myself that the doings of that place are not relevant to me now. I will never live there, my life is bigger than that now. The life that my parents supposed that I would have is one that will not happen.
But I do read it sometimes, for the names. The names make me yearn. Names of people I remember, names of roads that were mine to roam when I was 8, or 12; family names that have braided together over hundreds of years.
I always check the police blotter, (very dull,) and the obits. I am 50 now, so it seems to me that the people who were the grown-ups, (of indeterminate age,) when I was a kid, are dying off at great speed. I have lost a number of my teachers by now, I suppose the classmates will begin to go next.
This week led me to an obit I had missed, from winter time. The intimidating woman who taught horseback riding has died. I gave up on riding quite early. I liked horses, the soft noses, the mobile lips, the smell of them, the way their skin was warm when you slid your hand under the waterfall of the mane. I loved the way you could lean against them and they would take your weight, and bring their great silly face around toward you to see what you were thinking. I loved all that.
And once I had the boots and the hat, and the lessons. But this woman scared me so that I had to give it up. She had taught hundereds of little girls, (mostly girls,) to trot and canter and jump, to change leads, and to push their heels down and keep their little backs straight. But my horse never seemed to listen. My horse rasped the leather through my fingers and cropped grass. My horse held his breath when i put the saddle on, so it was always too loose later. I just never got it. I was, as she said, hopeless. Whenever she spoke to me I felt my throught go dry and my eyes fill with tears. She said that the horse did not respect me. I had no idea how to get a horse to respect me. Soon enough my friends were doing jumps, I was still plodding in a circle in the baby ring.
Finally my parents pulled me out of the lessons. It was a very public failure in my little town. At 8 I had humiliated my mother becuase I could not get a horse to do what I said. It was the first of a number of such failures, and my mother never let me forget.
But you know, now that I am so much older myself, I think the failure may not have been all mine. Anyway,the riding instructer is dead. The obit said that she was active in the church and had been a fixture of the town. I know that there are hundreds of women who learned riding from her. They learned confidence and freedom and speed and power. Those were true things, and for them she was a good teacher of those things. I learned that you can fail publicly and have it inside you for the next 40 years.
I do still like horses though.
I want to go to the beach, alone.The empty beach, of my childhood, which is closed to me now, even should I go to what was home.
I want the surf, the wind that shreds the fog and lifts the sand. The ocean stretches close enough to forever, even now. There are no troubles too big for it. It cleans, it absorbs, it forgives.
Swimming, even when the air is cold, I forget where my skin begins and ends. I want that. I am tired of the edges of me, too far out, too far in. I want the heave of the water to lift me off my feet, to cast me up, up like flying,lifting me like a weightless tiny thing, to the top of the unbroken swell. I want to come down the other side, streaking fast as the green streaks of bubbles, to the shock of the sand under my feet.
I can bask and roll in the water as seals do, graceful for once. I can ride the waves in, flying with the water's push behind me, flat as I can go, and fast, until I feel the sand scrape my skin, and the little pebbles speak right in my submerged ear.
I want to swim until I am staggering tired. Only then will I ride the wave in, and stumble up, to sleep where the sand is warm.
The wind changes around sunset. It blows from the land, the birds find places to sleep. The sand is cool on the surface, warmer underneath. I can dig my cold hands and feet into it. And I can stay to watch the stars come into the purple-blue sky. They are closer here, and there are so many. They crowd the sky, lean down to look at the ocean. There is nothing cold about them. They are just out of reach, and warm as velvet.
In the starlight, I can swim again.
There are a hundred reasons why I cannot do this. Each reason, a step away, into a bigger life. Besides, even I did not swim in winter. (June to October, in New England, are months for swimming. Fall is best.)
But today I just wish I could.