Saving Mr. Banks

SPOILER ALERT: If you haven’t seen the film Saving Mr. Banks, and you plan to watch it and prefer to discover it for yourself, then stop reading now. I’ve just discovered it myself, and I have a lot to say about it. You have been warned.

Years ago, when I was little, I saw the Disney film Mary Poppins, with Julie Andrews and Dick Van Dyke. I loved it. I learned all of the songs. I remember very little of it now, but I do recall it having lots of music and dancing in it. I didn’t until this past summer actually read the original book, written by P.L. Travers (not her real name). The Mary Poppins in her pages does not sing or dance or laugh or do anything as silly as say “supercalifragilisticexpialidocious.” I was shocked that such a film was created from such a book.

Well it turns out that Travers herself was pretty shocked, too. Saving Mr. Banks chronicles the difficult process that occurred between Disney Studios and the book’s author during the film’s creation. Emma Thompson is brilliant as the rigid, terrified Travers, and Tom Hanks plays Disney in all of his frustrated creativity. Disney had promised his daughters to make a film version of Mary Poppins, because they loved the books. He somehow decided to make it a musical, and it ended up being a huge success. But Travers always regretted the choice to sign over film rights to Disney. She despised frivolity and animation and what she called “fluff.”

The movie also explores Travers’ difficult childhood with an alcoholic father who dies young. In the film, it looks like tuberculosis, but in reality, her father died of influenza, in the early 1900s. She was a young girl at the time. In the critical scene, we discover that the author’s birth name was Helen Goff, and that she had taken her father’s first name, Travers, as her pen name. And we discover that both she and Walt Disney have projected each of their own fathers onto the character of Mr. Banks. Disney says, “Mary Poppins didn’t come to save the children. She came to save the father.” And we know by her silence that Travers agrees.

Of course. Disney goes on to talk about some of his own difficulties growing up, and how he wanted to create a different story for himself. “We can redeem him, save our father, if not in life, then in the imagination,” he says. “That’s what we do, as storytellers, renew a sense of hope.” And according to the film, it’s this argument that finally convinces Travers to sign over the rights for Mary Poppins. Something that in reality she regretted. But in Saving Mr. Banks, we see her respond to the film with tears and laughter.

I’ve been stewing about this film all evening. It’s heartbreaking that she had to lose her father so young. And it’s understandable that such a loss could have hardened her against a world that seems just too utterly cruel. I identify with her in so many ways, as a writer and as a daughter. That’s perhaps why Disney’s words strike such a deep chord for me. I realized as I wrote tonight in my journal that everything I’ve written has this same goal, of redeeming my father, of creating for him and for me — for us — the happy ending we never actually got in real life.

So far, that’s three books. None of them published, all in rough-draft, vomited-onto-the-page form. All of which I resist editing or revising, because it’s all so close to my heart. It hurts. But I’ve been such a mess, not writing. I get depressed. I’ve been more anxious about Jack and life and everything. I said to Brian tonight, “Maybe I’m just anxious about the surgery coming up.” And he said, “Or maybe you need to be writing again.” What a smart man. Dammit.

So I turn back to the drawing table, or writing desk, or whatever. Again. And add as much fluff as I can. :-)

The Dream of a Common Language

If you’ve been living in a shed (as my old film prof used to say), you may not have heard of the book Wild, by Cheryl Strayed. It came out a couple of years ago, followed quickly by the film version, starting Reese Witherspoon, which is currently making the film festival circuit and will be released to theatres in December. In the book, Strayed recounts her solo hike of 1100 miles of the Pacific Crest Trail in 1995, four years after the death of her mother. Throughout her harrowing journey, Strayed reads and then burns over a dozen books. She burns them to keep the weight down in her pack, a lesson she learns the hard way on the trail. But one book makes the entire trip with her: Adrienne Rich’s poetry collection The Dream of a Common Language.

I was so intrigued by Strayed’s choice to keep that book, despite her already knowing the poems inside it by heart, that I had to get the book myself. If you’re not familiar with Adrienne Rich, I’ll say she was a feminist poet, though she became more feminist as she got older. If you are reading this and went to grad school with me, you probably know a lot more about her than I do. But I do know that the title comes from a line in one of her poems, a line that immediately follows the phrase “the drive to connect.” I feel as if I have been living those two phrases for some time, both in my writing life, and in my life as a mother.

You see, Jack has autism (if you’re just tuning in), and it’s difficult sometimes to connect with him. I often dream of finding a common language, so that he can understand me, so that I can understand him. We are lucky that Jack is quite verbal, at least at home with us. But his means for communicating often involve repetitive phrases and echolalia, where he just repeats something we say, or a line from a story or a song. Often, we have to guess at what he’s trying to tell us. And that’s particularly true when he’s upset.

In a way, it’s like still having an infant: Why is he crying? Is he hungry? Tired? Did he hurt himself? Sometimes he can give us a hint. If he’s injured, for instance, he asks for a napkin. But this morning, when I didn’t understand what he wanted, he head-butted me in the face. His brow bone hit my cheek bone dead on. Not the kind of connection I was trying for. I saw stars. I yelled, “Ow!” And then he got more upset and began to cry. It was not a good start to our day.

So I e-mailed Jack’s teacher for the third time this week, begging for more information. Last Friday, at Jack’s annual IEP meeting, his OT mentioned something about “intensive language programming.” This was at the end of the meeting. We had already discussed his goals for the year, and what accommodations we felt he needed to meet those goals. I felt very much in tune, especially, with Jack’s speech therapist, who was independently doing a lot of the same exercises with him as we are. Jack is pretty high functioning, and his classroom teacher and I had several times discussed the benefits of his being in an “integrated classroom” with “neurotypical” peers, who can challenge him and model for him more typical speech.

So this mention of intensive language programming sort of went over my head at first. It seemed very much at odds with previous conversations. And since we were on our way out the door, and my brain was fried already from nearly two hours of discussion, I dropped it. But the phrase circled through my brain all weekend. On Monday, I finally e-mailed Katie, Jack’s classroom teacher, and asked if she really felt that he needed this intensive therapy. I was expecting her to say, “Oh, no, don’t listen to her.”

But she didn’t. She told me that she was actually considering it for Jack, that it may help him progress more quickly. But, she was quick to add, “That’s a discussion for January, when it’s time to choose a kindergarten.” It was the beginning of the school day, and she was busy, so I cornered the assistant teacher and asked her a few more questions. She answered the best she could, but it’s really not her decision, and she seemed a little careful about how much she told me. She focused, instead, on reassuring me that, no matter what, Jack would be OK. And that reassurance really did help.

But the questions continued to gnaw at me. What, for example, is “intensive language programming,” anyway? What does that look like? Additional therapy after school? Would I be administering it? Or would it basically become his full-time school day? And if so, where? At his current school? At the autism-specialty elementary school across town? So I e-mailed Katie again, asking her for a conference slot this Thursday or Friday. It was already set up as parent-teacher conference time, but I hadn’t signed up for a slot, since I knew we were having his IEP meeting, and I figured we would cover everything then. No one was expecting the ill-timed bomb dropped by the OT.

I didn’t hear back from Katie on Monday, or Tuesday, and when I still hadn’t heard from her by this morning, I was getting mad. So I sent a third e-mail: “I know I’m being a pest, but I really need some clarification, here. What would this other option for Jack involve?” I explained that when she used the phrase “intensive language therapy,” she probably had in her head an image of what that would look like. Because she has learned the lingo. But I haven’t. I don’t know what that means, what that looks like. She may as well be speaking Mandarin.

By 3pm today, there was still no response by e-mail, so when I picked Jack up from school, I cornered Katie. She agreed to a conference time on Friday morning, explaining that she felt it would be better to meet face-to-face than for her to answer my questions by e-mail or on the phone. I know she hadn’t planned to have this conversation at this point, but the can of worms is open now, and I’m not about to pretend they aren’t crawling out.

In the past, though, my face-to-face conversations with Katie have always reassured me that we’re on the same page when it comes to Jack. And I have let her know about the head-butt injury this morning, and that we are totally on board with helping Jack communicate more easily, whatever that takes. So I have hope that with her help, and possibly with the help of this intense therapy, one day, we can sit down with our sweet boy and know that we’re all speaking the same language.

There but for the Grace

I haven’t been posting anything about Jack lately. Partly because I’m preoccupied with my own organs, but also partly because things with Jack have been pretty difficult.

Jack has always been a night owl, since birth. But since he was about five or so months old, we could count on him to sleep pretty solidly through the night. His typical sleep times are about from ten pm to eight am. It works for us, because Brian and I are both night owls, too. But last week, Jack was waking up two and three and four times every night, screaming. At first we were alarmed. We ran to his room. Had he fallen? Was he hurt?

We were taking turns with him, so it took us a couple of days to collect the data. But it finally dawned on us that Jack was always asking for his toy seahorse that plays music and lights up. And almost every time, the seahorse was right next to him on the bed. He knows how to keep this seahorse playing, which he does most of the time every day. It wasn’t out of batteries. All he had to do was push the seahorse’s tummy, and it would light up and play music for about ten minutes.

So for a while, we just turned it on for him and left. Then he’d start screaming again as soon as the seahorse stopped playing. So I figured I would just stay with him until he fell asleep. I asked him if he wanted me to stay or to go, and he always said stay. So I did. But after three nights of this, I was bleary eyed and going slowly, torturously insane. It reminded me of his newborn days, and as I had found out then, sleep deprivation doesn’t just make you tired. It makes you crazy. Bad crazy.

Brian was the same way, because even if I was the one who went into Jack’s room and stayed with him, the screaming still woke Brian from a dead sleep, and the shock of it kept his adrenaline pumping for an hour or more. So none of us was sleeping.

But this is really a minor complaint. There are autistic kids out there who never sleep. Or sleep only three hours a night. I’ve recently caught up with the Kelli Stapleton case, through Mostly True Stuff. The mom who runs that page has a boy with autism, a girl with Down’s and autism, and two more kids. She was friends with Kelli Stapleton, who a little over a year ago, tried to kill herself and her teenaged autistic daughter by asphyxiation in the family car.

Kelli’s daughter, Isabelle, had already beaten her mother so badly that she was twice hospitalized. Her violent outbursts were always directed at her mother. And one day, Kelli just snapped. She had been fighting hard for her daughter to get appropriate services and support, in a way that would not lead to any more hospitalizations. She was tired and stressed out and not getting a lot of help for herself. After Jack’s one week of sleeplessness, I was about to jump off a bridge (if they had any in Colorado). I cannot imagine having a teenage child beating me up every day. By the time Jack is twelve or so, he will be taller than I am. The idea terrifies me.

I don’t excuse Kelli’s actions. But I can understand them. Raising kids with special needs is freaking hard work, and we don’t talk about it, and no one else seems to realize how difficult and relentless it is. Luckily, Kelli and Issy both survived. Kelli has been sentenced to ten to twenty-two years of prison for her crime. Her husband has divorced her, and now he is the sole caretaker for Issy and two other children.

Jack’s now back to a pretty normal sleep routine. We finally decided to let him cry it out and find the seahorse for himself. We figured that our rushing into his room only stimulated him more and kept us all more awake for longer. So far, so good. Jack had one crying wake-up the first two nights, but both times was able to find the seahorse on his own and turn it on and calm down.

We are lucky. We. Are. Lucky. We aren’t better parents than Kelli Stapleton. We’re just lucky. When I hear stories like hers, I just think to myself, “There but for the Grace of God go I.” And I’m thankful.

Female Problems

I’ve been writing a lot lately about my uterus. I’ve never been particularly subtle about it, to be honest. I’ve always had bad cramps with my periods, and I remember complaining when I was younger that my “uterus hurt.”

This was not always a welcome revelation. Most people, women included, preferred to use euphemisms to talk about their monthly cycle. My mother used to call it “the curse.” (She was referring to the Biblical story of Eve, of course, but that’s a topic for another time. Because technically, Eve was the only one in that story who wasn’t cursed. But I digress.) When women had endometriosis or fibroids or heavy bleeding or horrible cramps, they often used the umbrella phrase “female problems” to explain what was going on. As though they were ashamed of their own bodies. As though it were something irrelevant that could be dismissed and forgotten. Oh, it’s just female problems. Glad it’s nothing serious.

When I recently searched for books about hysterectomy and the uterus on Amazon, I was relieved and pleased to see a number of memoirs by women who had undergone hysterectomies, most often due to cancer. Of these, about half were described as “humorous.” One title was compared to Erma Bombeck. I have to say, I have mixed feelings about this approach. On one hand, I know the power of humor in difficult times. It can be healing and bracing and help us bear the unbearable. Sometimes. But I also have to wonder if a humorous approach would be encouraged to make the subject matter more palatable to readers. No one wants to read about the angry hysterectomy patient. Let’s at least be entertaining.

This brings me back to Eve, which I guess I’ll write about now, after all. I don’t even want to get into the argument of whether she ever actually existed. (My stance is that it was a myth, a metaphor explaining why life is hard for us humans.) But unlike my mother’s take on it, I don’t think Eve caused us all of this pain and heartache. I do, however, think the story of Eve has done a lot of damage.

I think it would be good to understand that when the ancient Hebrews told this story (for it was an oral story long before it was ever written down), they were surrounded by people who worshipped, among other things, the Goddess, the feminine divine. The serpent was actually a sign of wisdom and healing in that older tradition, but the Hebrews didn’t want their people taking up those beliefs, so they made them bad. I can get much more cynical about the motives behind dis-empowering women, but I think this will do for a start. Don’t believe in a female god, that’s bad. Believe in Yahweh, that’s good.

And so institutionalized sexism began. Women have been referred to as “sinister,” on the left side of the body. The weaker sex. Even the phrase “hysterical woman,” comes from, you guessed it, the uterus. (Maybe once my uterus is removed, no one can accuse me of being hysterical.) This sexism can be extended to include “Mother Earth,” if you want to go there with me. The word matter comes from the Latin mater, meaning mother. And there are schools of thought that argue that matter, the body, is evil, while the spirit, the mind (the so-called masculine aspects of existence) is the only good.

Here’s where we get ourselves into even more trouble. Because if we see the earth, like women, as something to dominate and control, we treat it a lot differently than we would if we believed it to be holy, equal in goodness and divinity to the masculine traits of mind and spirit. If we rape the planet like we’ve raped the women on it, what will happen? Nothing of course, we thought. The earth can’t do anything. It submits. The Bible says so. The feminine part of creation can’t do anything to hurt us. It’s not powerful enough.

Sure. Tell that to a hurricane.

And I sense among the female members of the human species a similar swell of power. We have always been stronger than we appear. (Try childbirth sometime.) But I feel a movement back to the Mother, a growing to critical mass. In books from Margaret Starbird and Sue Monk Kidd — and in our intense and growing interest in them. In our ever-increasing awareness of climate change and its already obvious effects on our environment, our economy, and our lives. In the drive around the world to decrease carbon footprint and turn to renewable sources of energy. In the larger understanding and support for women surviving breast cancer.

Let’s talk about it. You can be funny or serious, angry or accepting. But talking about it will change the game. Join me.


Always a Woman

When I was a senior in high school, for a few months, I dated an “older man.” He was a college freshman from Tacoma Park, Maryland, about two hours from my hometown. We met at a church conference, and he gave me a back rub, and I asked him to marry me.

We didn’t get married, and I think that is best for both of us. But for a while, we were smitten. I remember a play fight, where he referred to me as a kid or a girl, or something, and I was highly offended. So he played “Always a Woman” by Billy Joel, and we danced in the kitchen, and all was forgiven. The lyrics aren’t entirely flattering, but admittedly appropriate descriptions of my eighteen-year-old self.

Now I’m not eighteen, and I’m no kid. I’m 42, and I’m losing my uterus in three weeks. Something I had always taken for granted that defined me as a woman. But I won’t stop being a woman when it’s gone. Just like my friend Jenn didn’t stop being a woman when she lost her breasts to cancer. And this process is making me ask some questions about what it means to be a woman.

Brian and I went out for lunch yesterday, while Jack was in school. We sat outside at O’Dell brewery, and he had a beer, and I had a root beer, and we both ate steak tacos and quesadillas from a local food truck. And we talked about what it means to be a man and what it means to be a woman.

He said that the masculine ideal of driving a big truck and having huge muscles and smoking Marlboro cigarettes didn’t apply to pretty much any man he knew. And I thought of that meme that’s gone around recently with Xena the Warrior Princess screaming. Delicate feminine flower, indeed. Most of the women I know fit the picture far better than the caption.

We talked about how women have more power and strength than is often attributed to them in the larger culture, while men are a lot more sensitive than their stereotypes. We also talked about the biology of gender. I have a friend and a cousin who are both going through gender transition, and as far as I know, most if not all of the parts are staying the same. My friend who is transitioning from female to male will still need to get pap smears every year to stay healthy. And the only surgery I know for sure that my cousin is pursuing is rhinoplasty, for a more feminine nose.

So, what’s a uterus? What does it mean to know that I’m a woman, just as my friend and cousin know in their hearts that they started out in the wrong kind of body? I remember a discussion in grad school where my professor quoted a theorist who posited that not just sex — the social roles of men and women — but also gender is just a construct, something we’ve invented to make sense of the world. I didn’t believe it at the time, but my mind is changing.

I can’t resist the urge, right now, to quote an old fast food ad: Parts is parts. My situation is mild. We have soldiers coming home without limbs. There are accidents of birth and life that leave people without legs or arms, and some of those people go on to compete in athletic events at the national and international levels. We are who we are. We have what we have. And we live with that. That feels, to me, to be the definition of a grown-up.

Thanks for the dance, old friend. I won’t forget it.


Once Upon a Time

While I’m bedridden, I may as well bore you with some commentary on the best show in the whole world, ever, Once Upon a Time. (I swear that they are not paying me to write this. If only!)

I have always loved fairy tales and magical characters and adventure, and so this show definitely spoke first to that interest. The writing is brilliant, and the ways in which the creators have adapted old stories are clever and unexpected. A Jack the Giant Slayer whose full name is Jacqueline. A badass bandit Snow White. Red Riding Hood’s granny with a sawed off shotgun. I love the strong women in this show, created by two men.

The acting, too, is so moving, so good. The amazing Robert Carlyle plays the character of Rumplestiltskin, and if you have never seen this man in action, you owe it to yourself to watch just one episode of this show, just to watch him work. He’s the best, I would say, but the rest of the ensemble is also amazingly strong.

But mostly, I love it because it’s so real. I write about it in my journal. I fall in love with the characters and cry when someone cries or gets hurt. When a character I hated died, I cried for an hour because the actress who played her daughter was so anguished, I could feel what she felt. “What am I going to do?” she wailed. And I remembered wailing the exact same thing when my mother died, and I cried with her.

Essentially, these are stories about family. The characters may get what they want through magic, but the things that they want — love, happiness, forgiveness, revenge — are all too human. The regret of a parent who abandoned his son, the bitterness of that son who had to grow up alone. The fear of not being a good father or mother. The envy of one sister by another. They may travel through magical portals between worlds and fight soul sucking wraiths, but the truth is deeper than that. They are people. I see myself in nearly every episode.

The writers and creators of this show have tapped into a universal store of human emotion through fantastical stories with flying pirate ships and fairies with pixie dust. This show inspires me to write more deeply, more honestly, more bravely, because I want my stories and characters to feel as real as these versions of Snow White and Belle and Captain Hook.

This show also makes me want to hug my son and my husband every night, to be thankful for them, that we’re all together. And that’s a pretty good spell to be under.

The Hero’s Journey

Sort of a grand title for what’s really a very human and rather gruesome bodily experience. But hear me out. If you’re not squeamish.

I have decided to have a hysterectomy. The pain and debilitation caused by my uterine condition is just too much to bear. Dietary changes and exercise are definitely in store, but they’re currently impossible. I don’t feel like even walking, let alone more intense exercise. I can’t stand up long enough to cook a meal, or play with my sweet boy, or do the things I have to do in a regular day. I haven’t been writing or making art. Something’s got to give.

So we saw the gynecologist yesterday, and she agreed that I’m a good candidate for the surgery. The ultrasound today didn’t show anything scary: no tumors or even fibroids or polyps or anything. No cysts on the ovaries. In fact, the tech couldn’t even find one of my ovaries. She said it was actually a good sign. If there were a cyst, she’d see it right away. Now we wait for the doctor’s call tomorrow, to see if she needs a biopsy before the surgery, and we’ll go from there.

I feel hopeful for relief, but I also feel very, very sad. I’d always wanted lots of kids. But even beyond that, even if I’d only ever wanted one child, I’m losing something very important to me, an organ from my very center, Jack’s first home in the world. It did such a wonderful job of keeping him happy and healthy in there. Despite the times that I’ve cursed it for hurting so much, it’s always done its job. Even the horrible pain is a reaction to the endometrial lining growing into the muscle. By sloughing off blood and contracting, it was just trying to get rid of the invasive tissue.

And this brings me back to Jacob. When Jacob wrestled with that angel, he left changed. From then on, he would limp from the wound at his hip. His name would be Israel. He could never go back to the way he used to be. When I mentioned this to Brian, he reminded me of Joseph Campbell, the mythologist and author of The Hero With a Thousand Faces. Campbell wrote and talked about the hero’s journey, and in one example, he used Luke Skywalker from Star Wars, who loses his hand. He’s fitted with a prosthetic hand, but he’ll never be fully, physically whole again.

I’m very, very lucky. I’m losing a part of me that I no longer need. When my mother was only five years older than I am now, she lost most of her large intestine. I was eleven years old. She would poop into a bag through a hole in her belly for the rest of her life, which would turn out to be another eighteen years. I have a dear friend who has lost both breasts and most of her lymph nodes in both arms, to cancer. I have another dear friend who has lost her thyroid, also to cancer, at a very young age. I certainly don’t have the market cornered on pain. Not even close. I am very thankful that for me, this is not only possible, but easier than so many other life-altering procedures.

But it is life-altering. This changes everything. I can never go back to being a woman who can have babies. Just like my friends can never recover the parts of them they have lost. Just like my mother never could go back to “normal.” Just like Jacob, just like Luke Skywalker.

Just like everyone. None of us gets out of here without getting marked by our lives. Caesarian sections, scars, burns, injuries, illnesses. By the time we die, our lives and bodies will alter many times. There comes a point in everyone’s life when you have to lose something to move on. We all have to take the hero’s journey.

This feels a lot like when my mother died. And when Jack was born. And when my dad died. Nothing will ever be the same. I will never be the same. And as earth-shaking and shattering as it feels, it doesn’t have to be the end of me. Just the end of the old me. Now I get to create a new me who will limp on from here.

Dark Night of the Soul

I have long been a fan of the idea “the dark night of the soul.” I have had enough of them to know their worth, though they’re never pleasant to go through. They always teach me something, and now here’s another one.

The story of Jacob in the Old Testament reveals a dark night of the soul for him. He had stolen his brother’s birthright, and now he was getting word of his brother’s approach. He felt guilty and defensive, and feared an assault on the life he had built with Rachel and Leah and their children. He sent gifts on ahead of himself, to butter up his older brother, in the hopes of avoiding conflict. He fretted and worried. He sent his family ahead of him as well, and he stayed alone at night. Through the night, he struggled with a “man” or angel. When the angel realized he couldn’t overpower Jacob, he touched the socket of his hip, dislocating it. He begged Jacob to let him go, because daylight was coming. “Not unless you bless me,” said Jacob.

I was surprised by how short this passage was in Genesis, when I went back to reread it. This scene has loomed large in my imagination for years, and it was odd that it’s so short. Because in this scene, everything changes for Jacob. The angel/man does bless him. He renames him Israel, the father of nations. Because he has “struggled with God with man and have prevailed.” And of course, Jacob is physically never the same, either. He limps away from that spot, and the Hebrews will never again eat the meat of that joint in an animal, in memory of Israel’s injury at the hands of the angel.

So, this isn’t just a Sunday school lesson, though it may sound like it. I haven’t read much from the Bible in years, though it used to be a nightly practice. But I’m currently sitting in a hotel room in Avon, Colorado, and my uterus is rebelling. Very, very severe cramps, bleeding. My whole body aches. I could barely sleep last night. And I’d had only three hours of sleep the night before. It’s time to see a doctor. This has been going on for nearly three weeks now.

I have a condition called adenomyosis, similar to endometriosis in its symptoms. It’s when the uterine lining starts growing into the muscle of the uterus. Very, very painful. Even very high doses of ibuprofen can’t keep it completely at bay. I do what I have to do when I’m home, because I need to be present and available for Jack. But I’m alone now, and it is really, really hard.

I came up here for a getaway, a retreat. And I felt pretty well yesterday on the drive up here. I’m near Vail, and the mountains are beautiful. The aspens have started turning, so there are splashes of bright gold on the hillsides, along with the green of not-yet-turned trees, and the deeper green of the evergreens. But I feel so horrible this morning that I don’t feel like going out into this crystal blue September day to enjoy it. This is my dark night of the soul.

I have hung on to my uterus because we thought we wanted another child. Jack will be five in the spring, so it took us a while, but we’ve recently decided that more children will be just too much for us. Brian’s exact words were, “I might die.” We love Jack dearly, and he is such a sweet boy. But autism is not an easy thing for any of us to deal with. It’s so hard not to know why he starts crying in the middle of the night, sometimes. He can’t articulate his fears. If he hurts himself, he asks for a napkin. But he can’t say, “I hurt my head.” It’s hard, and it’s all we can do to keep going and make sure he has all he needs.

But here’s the thing. I’m an only child, and I grew up very lonely. I don’t want Jack to have that experience. It was awful. I have wanted a big family since I was old enough to talk about it. In kindergarten, I told my teacher I wanted three sets of twins, six children. I had no idea, of course, how harrowing that would be. I had no idea how hard it was to raise children until I in fact started raising one. It’s fricking hard. My hat goes off to parents of two or three or four or more kids. I don’t know how you do it. I honestly don’t. I fall into bed, exhausted, at Jack’s nap time, and sleep. Just so I’ll have the strength to handle dinner.

But my uterus is crying out for help. And I am for the first time considering the real possibility of a hysterectomy. And this grieves me far more than I can say. To give up even the possibility of more children is heartbreaking to me. Like Jacob, it’s a point of no return. I have tried hormonal therapy and alternative treatments. I will of course look at other options and choose what’s best for me. But even the idea of giving up my creative center has me in tears.

Other options include radical dietary changes and more exercise. I had a dream last night that I was running across a field at night, singing, “I don’t like to exercise. I don’t like to exercise. I don’t like to exercise. That’s why I’m fat!” Truer words were never sung in a dream before. I would be willing to make those changes to keep my body intact, of course, but I fear that I can’t do it, can’t stick with it, and that I’ll fail and end up with a hysterectomy, anyway.

Here’s where Jacob comes back in. The whole reason behind his dark night of the soul was because he feared retribution from his brother, Esau. Who I just now remember was his twin brother. He was so afraid of rejection, that he fought all night with an angel and never walked the same again. But he needn’t have worried at all. When Esau saw him coming, he ran to him and embraced him. They both wept. It was a beautiful reunion.



Last night, Brian got home from an overnight climbing trip. He slept in a cave and had wonderful views of the stars. He climbed an eight-pitch rock face. He hiked down that mountain and then seven miles back to the trailhead and the car. Except for the stars, none of this interests me in the least. But he is happy, and that makes me happy. Especially when he comes home safely afterward.

After we got Jack to bed last night, Brian and I watched the first episode of Season 3 of Once Upon a Time. Possibly my favorite TV show ever. I was so excited to watch it, I was almost trembling. After it was over, I said aloud, “That was the best thing ever. Ever!” Brian said that he liked it, and that he enjoyed watching something with me, but it was obvious that he wasn’t as into it as I was.

I felt a bit deflated when he didn’t share my enthusiasm. It brought back all kinds of memories of my father shutting me down or out when I got really excited about something. I’d come to him, bubbling over with happiness, or boiling over with tears — really, any strong emotion — and he would say or do something so dramatic that I would feel as though someone had literally struck me. My dad never struck me, except for the rare spanking. But he could shut me down, shoot me down, slam a door in my face emotionally. It was always devastating. And it always left me feeling that I was wrong to feel happy or sad or scared.

I realize now that he responded that way because strong emotions terrified him. That’s one reason he drank so much. He himself was such a deeply feeling person, that when I came to him with my joy, my heartbreak, my fear, it resonated with him. He didn’t want to feel it, so he made it a crime for me to feel it, too. It became wrong and dangerous. I became “too much.”

So when Brian reacted to the show with less excitement than I had, I had a moment of transference, as though my father stood before me, shaming me for my enthusiasm. It’s true that sometimes Brian delivers a similar blow. And Jack does it a lot. I come to him to tickle or cuddle or play with him, and he shouts or pushes me away. I realize with Jack, and possibly Brian, too, that their brains are so overloaded with circuits, my coming at them can literally overwhelm those circuits. But that realization doesn’t keep my feelings from being hurt. And it doesn’t keep me from wondering why I fall in love with men who push me away. All of the men in my life, at one point or another, for one reason or another, shut me down or shut me out.

On one hand, I want to rebel. The words to the song “Defying Gravity” from Wicked came into my head last night. No one should tell me I can’t feel what I feel. I don’t want to let someone else’s fear limit what I do and say. Then when I talked to Brian, I saw an important difference between his (and Jack’s) reaction to me and what I experienced with my father. With my dad, he tried to keep *me* from feeling it. With Brian, it’s more clear that *he* doesn’t feel the same way. During our conversation, Brian said, “I like your enthusiasm. And if I ever shut you down, I don’t mean to.”

So on the other hand, I have to ask myself if something deeper in me has a purpose in drawing into my life people who are harder to reach. Maybe with my enthusiasm, I can help draw them out of themselves. And that’s possible. But more than trying to change them, I have to ask what I have to learn, here.

Maybe my lesson is to accept imperfect love from imperfect people. To understand that someone’s reaction to me has more to do with them and less (or nothing) to do with me and my worthiness. To define my worth and happiness from within, instead of constantly watching for outside validation. To honor my enthusiasm as a gift, regardless of how others may respond to it.

Here, I’m remembering a boyfriend in high school, who used to restrain me every time a Sprite commercial came on the television. It was the 80s, the era of “I like the sprite in you.” I loved to get up and twirl around and jump and dance to this jingle. But it was either too much for him, or he got tired of it, and it became a game, his trying to hold me down as I wriggled and jumped.

That boyfriend is still in my life. He and his wife are both dear friends of ours. Both of them participated in our wedding. I know now, long after the fact, that he delighted in my exuberance. And Brian does, too. Maybe because it’s so different from how they would each react. I’m not sure.

Just as I have no intention of climbing an eight-pitch rock face but love being married to a man who totally digs it. Maybe we draw to ourselves what we don’t already have. Maybe we love the sprite in each other, even if it can challenge us sometimes. Maybe that’s how we grow.

This Is a Test

Wow, I think the universe was listening to me on Tuesday, when I wrote about how I don’t want Jack to change. I think Someone wanted to make sure I meant what I said. By presenting me with what will go down in Guppy family history as The Science Camp Fan Incident.

On Wednesday morning, Jack and I attended an open house for a private math and science preschool here in town. Jack had gone to one of their science camps in June, and he loved it. The married couple who ran the school were affectionate and effective with him, very sweet and encouraging: “Thank you so much for sharing your wonderful son with us. He was the bright spot of our week.” It didn’t hurt, in Jack’s book, that the school has a large ceiling fan in the lobby that Mary, the wife and lead teacher, allowed him to turn on. My boy loves fans.

Science camp had gone so well that at the end of the week, I asked Mary if she had any openings for the regular preschool in the fall. “Oh, I was hoping you’d ask me that!” she said. Jack already attends public preschool, where he has an IEP and a full complement of OT and speech therapy. Plus a great, intuitive classroom teacher with a background in generalized Special Ed. So we were considering the math and science preschool as a supplement to his other schooling. It turned out that the schedules conflicted, and we couldn’t enroll him. Bummer, was the general consensus.

Then two weeks ago, we got an e-mail from Mary. They had an opening in their morning class, which wouldn’t conflict with Jack’s other school. We pretty much jumped on it. I signed him up within a few days and paid the first month’s tuition for September (which I’ll say is a bit steep for six hours a week, but it seemed worth it). It seemed perfect. Mary and her husband Ernie were sweet with Jack. They both have Masters degrees in eduction, his in Special Ed and hers in Literacy. The school focuses on math and science, which Jack seems already naturally drawn to. And they have an inclusive policy about kids with special needs learning beside their peers.

Wednesday morning, at ten o’clock, Jack and I arrived for the open house. It was a chilly, rainy day, especially for August, and the beloved lobby fan was off. Jack became instantly agitated and asked Ernie, who had greeted us, if he could turn it on. Ernie agreed to turn it on for ten seconds and then turned it off, and Jack began to cry and shake. This is not a new story, that a kid with autism freaks out over what seems to the rest of us like no big deal. But fans are his *thing.* And he was already nervous: unfamiliar place, new people, etc. As his face drew down into the real porch-lip heartbreaking look of despair, Mary intervened and turned the fan on for Jack. She even teasingly scolded her husband: “Don’t be upsetting my people,” she said.

The fan was on, so all was well with the world. I will say here that Jack did brilliantly. He sat in a chair at a table and played with green-tinted homemade play dough. Aside from spinning the little plastic rotary cutters and calling them “fans,” he was perfectly calm and looked like any other kid sitting there. There was another mom and boy there, and we introduced everyone. Mary told us about her garden, her jewelry kiln, etc. Jack said something about Helen Oxenbury, a children’s illustrator, and when I started to explain, Mary said, “Oh, I know who she is. My degree’s in children’s literature.” Of course.

After about an hour, I figured it was time for us to go. Jack had met a few other kids and parents. Everyone seemed very nice. After a turn with the Legos, I figured we’d head out. That’s when Mary came to get Jack. She wanted to turn off the fan for a few minutes. “He needs to get used to it,” she said. I couldn’t really disagree. I didn’t think it was reasonable for me to demand that an entire school full of people had to keep a fan running all year long for the sake of my son’s fixation. It is true that he will need to deal with non-ideal situations. But he’s four. And it was the open house. I felt agitated, myself. Jack wanted me to pick him up, and I told him I would hold his hand and walk with him.

His agitation grew with each step. By the time Mary turned the switch off on the fan, Jack was in tears. She walked him back to the classroom and set a timer. “When this goes off, we can turn it back on,” she said. Then she tried to get him to sit down with the Legos and play like everything was fine. For him, it was not fine. His world had just ended. He climbed into my lap, and I could feel him shaking. He turned to me, his eyes wide and full of tears. “We’ll turn it back on in a minute,” he said, nodding, begging me to reassure him. “Yes,” I said. “We’ll turn it back on in a minute.” I rubbed his back and soothed him the best I could until the bell rang.

We walked back out to the lobby, and Mary asked Jack if he wanted to turn the switch back on. He said, “Want me to do it?” Which means that he wanted her to do it. So she did. He wanted to linger and watch the fan, the glorious, resurrected fan. But Mary marched us back to the classroom. I said to her, “He was shaking.” She said something like, “Yes, it was hard for both of you.” The other parents laughed politely. Jack was still very agitated, and he began flapping his arms. I knew that it was his way of regulating himself, of helping himself recover from that trauma. Mary pulled him to her and squeezed his shoulders, legs, and hips. I knew she was trying to help him calm down with deep pressure, one technique to help a kid like Jack restore his proprioceptive sense. But she did it quickly and then stopped.

Mary steered him to a seat at the table, gave him some play dough. He wasn’t interested. He stared at his left hand, which he waved in front of his face so fast, it was a blur. At one point, Mary said, “Quiet hands.” That’s when I stiffened. Still, I didn’t say anything. But I knew that we would either have to talk with her or take Jack out of the school. “Quiet hands” does not fly with my family. Only once did I ever ask Jack to stop flapping his arms. We were on a walk, not long after his diagnosis, and I asked him to turn his arms “off” and just walk. He did stop flapping his arms, but he talked about it the whole time, ashamed and troubled by my request, repeating, “Turn the arms off, Jack. Turn the arms off.” I felt like an asshole. I never did that again.

By the time we left the open house, I was near tears myself. I texted Brian. He texted back my exact sentiments: “Quiet hands – that’s not going to fly.” We first decided to sit down with Mary and Ernie and present them with our philosophy for working with Jack. But the more we talked about it, the more I remembered Mary’s general demeanor. The garden, the jewelry kiln, the degree in children’s literature. She at no point showed ill will toward Jack or to me, but I sensed deeply that we were at an impasse. We had different ideas about how to react when Jack was scared. And she was the boss at her school.

At one point, I said to Brian, “Well, he does need to be pushed sometimes.” Brian’s response: “Yeah, but how far? This was too far.” He pointed to Jack, who was still flapping his arms and humming to himself, an hour or more after we’d left the school.

The truth is, aside from the “quiet hands” thing, I don’t really fault Mary or Ernie and their methods. But it was too soon, too early in the game, to be challenging Jack, before he was comfortable with them and with that environment. It wasn’t even the first day of school. Maybe he does need to adjust to the fan being off, but right now? And when he gets so upset, doesn’t he deserve more time and space to calm himself down?

I finally sent an e-mail to Mary, telling her we were pulling Jack out of the school. She responded calmly but sadly: “I’m so sorry to hear this. I was looking forward to my time with him.” I was relieved that she was a grown-up about it, but I was also sad. I have no question that removing Jack from her school was the right thing for him. And I am thankful that I made that move before a month or more had gone by. I think I’m just sad because we had all been so hopeful that this would be a great thing for all of us. And it wasn’t.

Oddly, Jack has been very cheerful today. Brian even took him for a haircut, which used to be a huge ordeal. But today, Jack sat by himself on the little booster seat (not in his dad’s lap). He squirmed once or twice, Brian told me, but no screaming or real resistance. When he got home with his new grown-up boy haircut, I gasped. He looked so big! He ran up and down the hall, launched himself onto the couch, and let me tickle him until he ran out of breath.