On Halloween decorations

This is a Halloween essay from 2011.

 

This weekend, at Jessica’s behest, we decorated the house for Halloween. Now, at your house, Halloween may be all black and orange and eerie music, but at our house, it is quite pink and sparkly. The witch’s broom glitters, and the pumpkin has a cheerful smile, and we had to put out a sign that says “spooky” so that people who might not otherwise realize it would know that the house is, in fact, spooky.

She pronounced herself satisfied with our efforts once we added the black cat to the mix.

“It is a ceramic cat,” she tells me, “which means it is breakable and starts with an s.”

I untangle that and say gently, “Ceramic starts with a c, although it certainly does sound like an s.”

“It is a ceramic cat with a c,” she says, her index finger writing in the sky in the way that means she is trying to remember something, always an unreliable and inefficient process for her.

“Do you like the ceramic cat with a c?” she asks.

“I love the ceramic cat with a c,” I say.

“And why is that?” Her idea of a conversation is to impersonate an investigative reporter and pepper me with questions. Sometimes she writes her questions down in a notebook so she will not forget them.

“Well,” I say, “I like the ceramic cat because it reminds me of Halloween. And it is very pretty. And you picked it out, and I always like the things you pick out.”

She nods graciously, a queen accepting the praise that is due her. “What would you do if the cat spoke to you?”

“If the ceramic cat spoke to me?” I ask. “I would definitely be startled.”

She giggles. The idea of mama being startled appeals to her. “What if it said, ‘Hello, Jennifer’?”

She slants me a sly glance. She loves to use my given name in conversation, as if using it gives her a certain power over me. I may be mama, the source of all things, but I am also just Jennifer, as ordinary as a pin, and I better not forget it.

“Hmm,” I say. “Well, after I was through being startled, I would probably say, ‘Hello, ceramic cat.’”

“‘Hello, ceramic cat,’” she says, as if perhaps the cat has spoken and I just didn’t hear.

“Hello, Jessica,” I say in a silly voice and she pokes me and says, “That is you. Isn’t it? That ceramic cat cannot talk, can it?”

“No,” I say. I am never quite sure what she thinks. Her toys seem to have a secret life that goes on around me while I sit here doing my work obliviously. She is the same teenager who thinks there is a monkey in one of the trees near the library. She has seen a squirrel in it, and a blue jay who made a terrible racket, so why not a monkey? Why not anything?

She takes a strand of my hair and winds it around her hand as she has done since she was three months old, as oblivious to her fate then as she is now.

“Do you think the ceramic cat is glad to be here?” she wonders. “Instead of on the shelf at the store.”

“I’m certain it’s glad to be here,” I say. “Can’t you see it smile?”

“No. I can’t see if from here.”

I wince. Even after all these years, I often forget that the world is a fractured kaleidoscope of indistinct patterns and colors for her. But she is never impatient with me when I forget.

“Well, you will just have to imagine it,” I say and dutifully she closes her eyes and imagines it.

Then she opens her eyes and says with a smile, “What would you do if that cat said, ‘boo!’?”

“I would say, ‘eek!’”

“No you would not,” Jessica says disdainfully. “You never say ‘eek.’”

“That’s true.”

“You would say, ‘Dammit! That startled me!’”

“Probably,” I say and lean over to kiss her cheek, so plump and smooth.

“Boo,” she whispers.

“Dammit!” I say. “That startled me!”

And she laughs and unwinds my hair from her hand. “That was me, Jennifer,” she explains. “That was not the ceramic cat with a c.”

“Thank goodness.”

“Yes,” she agrees. “I think that would be too much startling for you.”

“It would indeed.”

“Ceramic with a c,” she says.

“Ceramic with a c.”

On the only thing I know about parenting

People often ask me parenting questions, saying, “What would you do?” I know why they ask; it’s because I am extremely positive that I know the answer to everything except when I don’t. And yet the question always strikes me as somewhat misguided. I may be absolutely convinced that a certain course of action is the only possible course of action to take, but what makes anyone think I have the slightest idea what the hell I’m doing?

I never know quite what to say. “I have no idea what I would do,” doesn’t seem terribly helpful as far as answers go, but it’s usually true.

My experience of parenting is nothing like most people’s, and frankly, “OMG, if she keeps this up she won’t get into Harvard!” is not a concern that moves me, although I recognize that it is important to other people.

The older Jessica gets, the less she is like other children. And yet she goes through the same everything any child goes through – she has a crush on the cute boy at school, she feels that life can be wildly unfair, she sometimes wishes her dad and I would get back together although that is not as important as it used to be, because she can’t figure out where her father’s partner would go in that scenario, and she loves Lisa. She wants to know what surrogacy means, and why she doesn’t always know what her teachers want, and when will she fall in love and get married, and how come I swear so much when it’s really not very nice. And also would I please just relax?

Here’s the thing. I can say that I try to raise Jessica in accordance with my values but it’s not that simple. I have never given a rat’s ass about compliance, for example, and the idea of raising a compliant child makes my teeth hurt. A child who did exactly what I wanted when I wanted it? I’d be bored out of my skull and I’d have a lame-ass kid I couldn’t stand. A child who understands the logical consequences of her actions? Much better, thank you.

But in some ways this is cheating because Jessica has always been a logical child; if you tell her she’ll have seizures if she doesn’t take her meds, she takes her meds. If you tell her she has to get up at 6:45 to make it to school on time, then that’s what she does to make it to school on time. It helps that I get out of bed when the alarm goes off and don’t beg the clock for five more minutes, and as much as I’d like to pretend that having some self-discipline makes me a brilliant parent, there is absolutely no evidence that this is true, because on weekends if I sleep past the time Jessica and I agree that we will arise, she gets up and roists me out of bed.

There are children in the world who do not find a logical argument convincing, and I have no idea how to cope with such children, and I imagine that is why their parents wish they were compliant and want to know how to make them so. I remember at a dance recital once trying to deal with a nine-year-old upon whom logical argument made no impression: “You can’t dance with that drawing in your hand. You need your hands for the movements.” “But I want to hold the picture!” I had no idea what to do. If I had to raise that child, I would lose my mind and cry quietly into my tequila more frequently than I already do. So if your child is not Jessica, I really don’t know what I’d do, so I’m afraid I can’t help you.

I have said from the beginning that Jessica is my Buddha baby and the only thing I have to do is not screw her up. That is still my guiding principle, although people are occasionally appalled at how much leeway I give her in making decisions about her own life (“She’s a teenager!” they gasp. “And, and . . . .” They never finish the thought but I know where they’re going: “And she’s mentally retarded.” As if I might not have figured that out by now.)

But I know what it is to be ground down by people who are driven by contempt for their own children, who will not trust their children to know what is in their own best interest, who never believe their children can make good choices – or that they’re entitled to make bad ones. People who are unwilling to accept that we are each the author of our own destiny. Even the teenagers. Even the mentally retarded ones.

So I treat my daughter with respect, even on those occasions when she is driving me out of my mind, and I trust that she knows what is good for her, and that she can make good choices, and that she can make bad ones, and it is not my job to stop her unless someone is going to get sued, and even then all I have to do is point out the possible consequences of her proposed course of action, and she will decide not to do it. Not because I am a brilliant parent, but because she is a logical child who dislikes unpleasantness when it can be avoided.

And that is everything I know about being a parent. And I don’t know what I would do, if I were in your shoes. Not because I am unsympathetic, or have no wish to hear your problem. Just because it is the truth, I have no idea what I would do with a child who is not Jessica. So I think it is quite miraculous that I got Jessica, and that she got me.

 

 

 

 

 

 

 

 

 

 

 

 

On taking care

“You should be careful with your bag,” Jessica says to me. “It’s heavy.”

“I will be, sweetie,” I tell her.

“And don’t poke yourself with that pen.”

“I’ll be careful,” I tell her, tucking the pen in the bag. Not comparing her to a helicopter parent or pointing out that I successfully managed all of these tasks for many many years before she was born.

“What are you going to eat for dinner while I’m at my dad’s house?”

“I have no idea,” I tell her.

“I will make you a menu.”

“Please don’t,” I say, before I can stop myself. Each week, we plan out a menu of dinners, looking in the cookbooks for the meals we will enjoy making and eating, typing the titles of the recipes into the computer, highlighting Monday in purple and Tuesday in blue. Then we make a list of all the things we need to get at the co-op. Then we make the meals from scratch, soaking beans overnight or mixing pasta dough by hand, and frankly it is exhausting.

“If we don’t make a menu, you will eat popcorn and cookies the entire time.”

“Maybe not the entire time,” I tell say. Occasionally I diversify into Pop Tarts.

“Mom.”

“Fine,” I say, rolling my eyes like I’m the teenager. “Make the menu.”

So she makes me a menu and carefully puts it on the refrigerator under the magnet with her picture on it.

“I will call you tomorrow,” she says. “I will ask, ‘What are you having for dinner, Jennifer?’” She doesn’t dare call me “mom” when she is feeling this fragile. And I know she feels fragile by how much she is mother-henning me.

I squint at the menu. “And I will say, ‘broccoli stir fry.’”

“You will be all right when I am gone.”

“I’ll miss you, pumpkin pie.” Sometimes she still lets me call her by that nickname. “But I’ll be all right.”

“You won’t cry.”

“I’ll be brave,” I promise her and give her a hug.

“Don’t get any tickets from the police.”

“They’re parking tickets, darlin’.”

She is not convinced. “When I am not here, you eat berry pie for breakfast. And you stay up until two o’clock in the morning.”

“Well, I’m not out carousing,” I feel the need to defend myself. “I’m usually trying to catch up on all my work.”

“And you work too much when I am gone.” She thinks working more than thirty-seven minutes a day is working too much. “There is no one to take care of you when I am not here.”

“I’ve been taking care of myself for a long time, darling girl.”

She nods. “You like taking care of yourself. You do not like to have someone to take care of you.”

“Well, I don’t mind when it’s you.”

“That’s because I am the best assistant. Ever.”

“That you are, girlfriend. That you are.”

On promises no one made

 

There is a girl at the coffee shop with her mother. She is ten or eleven, and dressed in the way girls her age dress, with flip-flops on (it is a warm afternoon) and pink polish on her toes. She has a thick book under her arm, held casually in the way that makes me sure she is accustomed to carrying books under her arm, and I do what I always do, which is to crane my neck to see what she’s reading.

It happens to be Mockingjay, the third in the Hunger Games series of YA books. A few years ago the girls her age were all reading Twilight.

And it is in that moment that I am ambushed by a hard and lonesome ache, that fierce desire to have a normal child, to be the mother of a daughter for whom the pediatrician doesn’t scrawl obviously retarded across her H&P every single time, as if we might not know otherwise.

To not know what I know, to not have spent the last fourteen years in hospitals, to be like other people get to be. For one goddamned day. Just one.

Because, you know, I get so tired. Everything’s a fight, every goddamned thing, and if I am forced to explain why we have to answer people when they say hello to us at the grocery store one more time, I will lose my fucking mind. If I have to have one more conversation with a doctor who thinks my daughter is such a fascinating case, and wow, why didn’t someone diagnose that Chiari malformation a long time before now. If I have to refrain from hitting a jackass who mocks Jessica while I’m standing right there, because I’m supposed to rise above it all.

I reach my breaking point right there in the coffee shop. When I was younger, I would have done this in a spectacular way, and people would have known it for miles around, but not today. Today I just leave. I know I am fragile at the moment and I don’t really feel like bursting into tears in front of random strangers, so out I go, right into the path of a good friend and her family, her normal family, and I swear to zeus I would just kill myself now if I had an implement handy. I know my friend is not unscathed – you cannot get to be this age unharmed, and if you have somehow managed it, you are doing life wrong – and yet it is the last thing I need to see, on a day full of last straws, a happy, normal family. On most days it makes me smile, because on most days I am sane, but not today.

I make it home before I start to cry, but the crying doesn’t even help. I can’t work up any sort of righteous “why me?” because, I don’t know, why shouldn’t it be me? Who is entitled to let this cup pass by? I have never known.

So I don’t ask “why me?” anymore, I just wish sometimes that it wasn’t me, and yet I can’t even wallow in that very well, because it’s such a pointless endeavor, it’s like being upset that you weren’t born blonde, and in Malibu. It’s the kind of thing a six-year-old closes her eyes and makes a wish about before she blows out the candles, the last birthday she’ll ever have when she can still believe there might be a little magic left in the world.

So the crying doesn’t help the ache, but neither do any of the usual panaceas: you get what you get, it is what it is, at least you’re not married to Newt Gingrich, no one promised you a rose garden, you could be trying to do this in Basra.

Through the stupid, thankless tears – I used to be so much better at feeling sorry for myself – I see the tulips that Jessica got me for my birthday, or actually the tulips that I got me for my birthday, because Jessica insisted: Your favorite is purple but they only have yellow. And yellow tulips are better than no tulips. And anyway yellow always reminds you of sunshine, doesn’t it, Mama?

They are all things I have said to her, things she can remember the way she can’t remember to say hello to someone who sees her in the grocery store, and I think of what an odd little duck she is, and it is entirely possible that if she could remember about the people in the grocery store, she would forget about the flowers. And the flowers bring me more joy than any number of random acquaintances in the grocery store, and so maybe I do want to be me today, after all, and to hell with being normal. I suspect I’d suck at it anyway.

On growing up in hospitals

I wrote this during Jessica’s recent hospital stay, so don’t worry, she’s not back in the hospital.

 

We are in Jessica’s hospital room and she is in pain, but it’s an hour before she can have any more meds, a fact that I don’t argue with the nurses over although honest to zeus you would think pain treatment would have come further than this in the last two hundred years.

“She is stoic,” they say, but they are not holding her hand as she suffers. She has learned how to corner the pain, to pin it down and keep it from overwhelming her. A game, I think, that she devised a long time ago, in another hospital room like this one. I am not sure it is stoicism, mastery of emotion, so much as it is resignation; there will be pain, and no one will do very much about it, and so there is no point in making a fuss.

Today she is more alert, and so I try to distract her, but she doesn’t want a movie, and she doesn’t want me to read to her, and she is extremely annoyed when I try to get her to help with the crossword puzzle. So I line up the stuffed animals next to her in bed, the stuffed animals and the Jasmine doll, and I ask her what the new addition to the menagerie should be called. We have already called the black dog Galadriel, from The Lord of the Rings, and of course Jasmine is Jasmine, but Jessica is undecided about what to call the purple bunny.

I ask her if it’s a boy bunny or a girl bunny and Jessica says she doesn’t know yet, so her father suggests that she should call it Pat, and he and I burst into laughter remembering the old SNL skit, but Jessica is not amused. So I begin to tell her a story about Galadriel, the elf-Rottweiler, and Jasmine, the princess, who are friends, and Jessica decides that they are on a quest, and she supposes the Pat is on a quest, too, and I suggest that perhaps Pat is on a quest for gender identity, and Jessica is still not amused, but I am entertained.

But Jessica is not content to let the animals and the doll have all the fun, so she decides that she is Frodo – she is always Frodo, because she understands what it is to be appointed a task you have no wish to carry out – and she says her father is Sam, and he rolls his eyes, because Sam is a bit of a comic character. But I know why Jessica has named him Sam. He and Frodo embark on their quest together, and when Frodo cannot go on, Sam carries him.

The neurosurgeon is Legolas, she decrees, a worthy warrior, one of the fellowship, and she asks me, “What time do you think Legolas will get here in the morning to see me?” and the asking cracks her up, and I say, “I think Legolas will get here at 8:30,” and I know there will be a bewildered nurse later when Jessica asks if it’s true that Legolas will stop by after breakfast.

“You are Gandalf,” she says to me, slanting me a sly glance, and I know her father is wondering why he doesn’t get to be Gandalf, the imposing wizard, the wise one. But I know. Gandalf may be wise but above all he is impatient; it is one of his most telling characteristics. More than that he is on a separate quest from Frodo, and Jessica knows this is true of me as well. Try as she might she cannot enter my life as a writer; she can enjoy looking at the books or even reading them, and she can listen to me talk about the struggles and the triumphs, but when it is time to put the words on the page, that is my task alone, and one she is not part of. It is just the same as when she runs the pain down and pins it to the ground. I can hold her hand, but it is her task alone.

“We are on a quest for recovery,” Jessica announces, and asks what the first step will be.

“We are already on the path,” I tell her. “And the next step will be to get out of this bed and go to the bathroom.”

On a quest, going to the bathroom is not nearly so prosaic and mundane as it is in real life. None of the steps are, not the sitting in the blue chair, or the walking down the hall, or the getting dressed in her own clothes. They are part of the quest, and she tackles them as if they were orcs or goblins, with determination and vigor. There is an air of intense purpose about her as she sets her mind to her recovery.

The trees outside the window are winter-bare, and I think of all the winters I have spent in hospital rooms, although I know I have spent other seasons in them as well. Still it feels as if it is always winter, when I am most tired and weak, that the tests come. But this time feels different. This time is the first time I no longer think of my daughter as a plaything of fate, the victim of a cruel and capricious universe, but a warrior rattling her sword in the face of whatever the days might bring against her.

On coming home

Jessica has been home from the hospital for several days now and is recuperating well, whereas I am still in need of strong drink. She is an amazing young woman and I am so very proud of how she faces her struggles and challenges with such courage and dignity. I am still a little embarrassed about doing my wild-haired, crazy-woman impression one night when I leapt out of her room to shriek at the nurse, “Could you do something about the freakin’ monitor alarms already!?!?!?” whereas Jess was all, “Mom. Relax.”

Relax is not now and has never been a word in my vocabulary but I promised her I would try. It would help if we didn’t have to have more scary shit for a while.

I appreciate everyone’s thoughts and wishes over the past few weeks. They helped me get through another round of “WTF?” the game that we play at my house way more often than I would like.

For the past few days, Jess has been sitting next to me on the sofa while I try to get some editing done (“I will take notes,” she says, and she makes an excellent editorial assistant, even if we end up having to have discussions of what “surrogacy” is at unexpected moments). Every time I try to take a peek at Facebook or read someone’s blog, she says, “Aren’t you supposed to be working?” I have actually accomplished more this week than I normally do in approximately a month, so I am thinking about hiring her just to sit next to me and say, “Aren’t you supposed to be working?” every time I start getting distracted. I figure I will be in a position to rule the world in about six months.

And that’s the news from our little part of the world. Thank you, as always, for listening.