Clarity

We recently took Jack to a private Occupational Therapist (OT) to supplement the therapies he receives at school. This guy is very well known in town and seems to have the only private pediatric practice in town. There are several places in Denver, but for wee Fort Collins, this seems to be it. This OT has a great reputation. When I brought up his name to Jack’s speech therapist, and then to Jack’s classroom teacher, they both lit up. Oh, this guy is awesome.

Well. Not so awesome. On our first (and it turns out, only) visit, he brought out a toy that scared Jack. That is not so unusual. Jack is scared of any number of things. And recently, oddly, he has become very anxious about spinning, whirring toys, which used to be HIS JAM.

When we moved away from Wilmington, North Carolina, our dear friend Lisa gave Jack a handheld fan with Woody from Toy Story on it. Push a little red button, and the small yellow foam blades spin around. Jack LOVES fans and things that spin, and he adored this gift. He carried it with him wherever we went, all the way across the country. It was “the cowboy fan” that got us through many a tight spot with Jack. But now it terrifies him.

Don’t ask me why. His babysitter, his speech therapist at school, gave him spinning lights and fans, thinking he would love them. But he hates them, now. Not sure what happened, but something triggered a startle reaction in him, and he never went back.

So anyway, this new OT brings out a spinning toy, and Jack freaks out. The OT tries to encourage him to interact with the toy, and Jack runs to me. I try to encourage him to go along with the exercise, and he finally runs to the corner of the room, facing away from both of us, and screams. So I figure we’re done. I go to hold him, and the OT stops me. He keeps going with this exercise, and Jack gets more and more frantic, and finally bursts into tears.

Finally, I pick up my boy and hold him on my lap, and he continues to cry, scream, and beg me for assurance. “The scary toy is gone. The scary toy is gone.” He repeats it over and over, his eyes on me, silently urging me to repeat his statements, so that he’ll know that they’re true. And I do. “It’s gone, baby,” I say. “It’s gone.”

This may be the end of it, except that throughout the above exchange with Jack, the OT is nattering at me in an insistent voice, telling me not to repeat Jack’s statement because then it lodges it in his mind, and he perseverates on it. Then he goes on about an example of a kid saying, “I have no friends.” And the parent says, “Of course you have friends.” Which dismisses and negates the child’s feelings. I look at him quizzically. This situation is nothing like his example. Does he even know what he’s saying? Or is it what he’s seeing that’s off?

So I have Jack, my sweet, terrified son, screaming in my face, and a skinny, white-haired hyper man behind him, telling me in a Jersey accent about how I’m doing it wrong and not helping my kid. I almost walked out right then. (Not for the Jersey accent. I happen to love the accent, and many people who speak with it.) But I didn’t. I saw it through. I nodded my head, waiting for the lecture to finish and for Jack to calm down. And finally, about ten minutes later, Jack is calm enough to engage in one more activity, but he insists on doing it from my lap. I don’t see how this is helping.

The next step, the OT tells me, is for him to sit down with Brian and me and discuss his findings from Jack’s “assessment.” For one reason or another, the meeting gets postponed for nearly a month, and by the time we meet with him, face to face, it is early February. I have pretty much made up my mind about this person, and Brian has disliked him from the first phone conversation because he uses his name to much: “Let me explain, Brian, blah blah blah.” It reminded him of the Bible group in college, where people used the name Jesus or God about a dozen times in a short prayer. It smacks of insincerity, of trying too hard, a little bit of a used car salesman.

So we went into the meeting with the agreement that unless this OT guy blows us away and changes our minds about him, he’s a no-go. Here’s the thing. In some ways, he did blow us away. He had good ideas about Jack’s sensory systems, and sound practices for helping to regulate them. Get him on a trampoline four times a day. Get him on a swing as often as you can. Do a “helicopter dance,” where Jack turns three times in each direction, at least once a day. These exercises, which strengthen Jack’s vestibular and proprioceptive systems, will help Jack to regulate his brain and help him calm down more easily. He noted that when Jack had visited the first time, he looked everywhere, taking in the environment visually because he couldn’t sense it accurately with his body.

He showed us a chart, using Calvin and Hobbs drawings, illustrating the range of arousal states, with Calvin slouching on a chair at zero, and jumping all over the place at ten, his tiny body surrounded by a halo of arrows pointing in different directions. In the middle, he told us, is where our best learning and communication happen. Without regulation, he explained, kids “like Jack” go back and forth between zero and ten, with little or no time spent in the middle of the scale. Once, when he left the room for a moment, Brian pointed toward the OT and back at the picture of Calvin at ten, with the arrows bouncing around. Yes, this man is definitely on the manic side. But he has good ideas.

My moment of clarity came when the OT proclaimed that the exercises we do with him every day at home will make the biggest difference, over time. “I can throw ideas out to you all day,” he said. Yes, I thought. I’m sure you can. But a million frenetic ideas won’t help as much as three or four good ones. So I figured if we can implement the suggestions he has already made, it may do Jack more good than coming to his office once a week and enduring the word vomit that emits from the OT pretty much constantly.

And here are a few other things we noticed. When the OT talked about the concrete-objective stage in cognitive development, I said, “Oh, from Piaget.” And he looked surprised. He seemed to have the idea that parents are not very smart, and that we have to be convinced to do things correctly. He also said something at one point about “forcing” kids to do things they don’t like. I understand that things like brushing teeth and putting a coat on when it’s cold are often things we have to cajole our kids into doing. But if Jack doesn’t like OT, fears it, talks about it when we’re not there like it’s a danger, that’s not a good thing.

We have been on this road long enough, and have worked with enough therapists, that I can get a pretty good sense pretty quickly whether a given relationship is going to work out. The best therapists and teachers for Jack have been those who have not only put him at ease, but have reassured us, as well. Those who have helped us to learn how to help Jack without making us feel like we’re horrible parents and doing it wrong. This guy may have a great reputation, and I’ve heard he’s very effective with a lot of kids. But I don’t think Jack is one of those kids.

And this brings me to my final point. We are seeking help from an OT because he is an expert on autism. But Brian and I are experts on Jack. And if our expertise and experience are not included in the discussion, we need to look elsewhere.

On the flip side, last week, we also toured the school where Jack will attend Kindergarten in the fall, in a full-day autism program. The director there showed us around the school, and the classroom where Jack will spend a lot of time next year. While we were there, one of the kids got upset, and Brian’s hackles went up. “Jack doesn’t do well if he’s pushed too hard,” he told her. “He’ll only get upset and shut down.” The director nodded and said, “We have found that every kid is different. And every kid needs a different approach to help him or her learn effectively.” Another moment of clarity.

Add to that the school’s mascot is the Owl. The one who sees in the dark. And Jack’s current favorite animal in the universe. And a symbol I often associate with my mom. Oh. Things are looking up.

Separate Disasters (or Family, Part Two)

There are the families we are born to, and then the families we choose. Sometimes, if you are very lucky, the two overlap.

Just this week, I saw the film version of Into the Woods. I was a musical theatre person in high school and college. I should have known better. I had friends who knew the musical by heart. I had heard of it, of course, but I had never seen the stage production, didn’t know the full story. But I am a fairy tale junkie, and the opportunity (i.e., babysitting) arose for me to see the film, and so I went. (Spoiler Alert!)

I think I cried through the whole second half of the film. I had expected a happy ending. What I got was a rush of heartbreak from my own losses, mingling with those of the characters on screen. The Baker had lost his wife. Jack (of Beanstalk fame) had lost his mother, and a giant’s widow was after him for killing her husband. Red Riding Hood had lost her mother and Granny to the aforementioned giant’s widow, who was terrorizing the kingdom. And Cinderella had discovered that Prince Charming hadn’t been named Prince Sincere for a reason.

So it wasn’t a happy ending. But the survivors created an ending they could live with, coming together, fresh from their separate disasters. And part of my strong reaction was in recognizing their grief and their determination to keep going.

I first started a regular communication with my cousin Billy when our parents, his father and my mother, brother and sister, were both dying of the same kind of lung cancer. They died fifteen days apart, in February 2001. Billy was the one who kept in contact. He continued to reach out through my own running away from the grief and the family it seemed to belong to. (Not realizing that grief belongs to every family.)

My mom’s other brother, my uncle Dick, died in April 2011, less than a year after my dad died. It was following his death that I got back in touch with his children, especially the three eldest: Barb, Ed, and Janis. Ed had sung at my mom’s funeral and at my wedding three years later. Barb and Janis lived up north, and were raising kids, and I just didn’t see them very often. A road trip in 2005 was the first time I had seen them in years, and the first time Brian had ever met them.

But honestly, thank God for Facebook. Because now we can all connect, despite distance and busyness and laziness. And thanks to Billy, we have all been able to gather in person. First, Billy proposed we gather in Atlanta, where he and his partner Garey and his mother, my Aunt Maggie, live. We all liked it so much, we wanted to get together again. This time, Garey offered a condo in Sarasota. Just last week was the second trip to Sarasota, and I got to go solo, with Brian and Jack staying home.

Barb brought a puzzle. Such a little thing, a puzzle. But it reminded me of my mom, who loved puzzles. She hoarded them, stacked in precarious towers on closet shelves. A round puzzle that was completely red. Another round one with wavy black and white lines. A huge one with mushrooms of various color and toxicity. When she was sick, she and I would piece them together: first the sides, corners, and edges. Then bit by bit, the middle. Standing over the table with Barb and Janis and their mother, my Aunt Ellen, nearly brought me to tears. I hadn’t done a puzzle since Mom was alive.

When I was eleven years old, we lived in Florida, south of Sarasota, in a town called Port Charlotte. Mom had to go into the hospital in Tampa for six weeks, for a colostomy. At first, I stayed with my dad in Port Charlotte. He went to work, and I watched soap operas and played the piano all day. Then Mom said no, and she sent me to stay with her sister, my Aunt Helene, near New Port Richey, north of Tampa. At the time I railed. I wanted to be with my friends that summer, not with Helene and Mom’s mother, Meme, and my great aunt Rosa Lee, all of these old people. But years later, Mom explained that she had wanted me to be with them, because they were the most like her.

When Mom died, I didn’t hear a lot from my cousins. I felt very alone. All alone in the world. I have no siblings. I thought this was it, I’d be alone forever. It wasn’t anyone’s fault. I’m not angry about it. I just accepted my loneliness as a fact. People may say, “You’re never really alone,” but let me tell you. When you’re an only child, and your mom is dead, and your dad is inconsolable, and you live alone with a cat, there’s a big Bullshit! just waiting to come out when you hear that platitude.

But near the end of Into the Woods, when the older characters tell Jack and Red that they’re not alone, even though their mothers are gone, I burst into big, fat, ugly, gulping tears. Because exactly a week earlier, I had been riding bikes on the beach with a cousin who has my mom’s nose, and another cousin with my mom’s name, in the sunshine on the sand. And let me tell you: It just doesn’t get better than that.

So, we have a family that we’re born to. And a family that, over time, we choose as our own. And if you’re very lucky, like me, sometimes they overlap. At just the right time, in just the right places.

We Are Family

I can’t get this song out of my head. You know the one. Sister Sledge. We are family! If you’re familiar with the movie The Bird Cage, you will, like me, think of South Beach in Miami every time you hear the song.

If you’re not familiar with the movie, here’s a brief overview. A gay couple who own and run a drag club in South Beach are confronted with their son’s decision to marry the daughter of an uber-conservative senator, who is coming to visit the next day, in order to escape a political scandal in Ohio. Comedic and poignant chaos ensues. It’s the American version of La Cage aux Folles, and you really owe it to yourself to see this film, if only to appreciate the amazingly talented cast.

Last week, I spent a week with my cousins. Really just a few days: five days total, including travel time. My cousin Billy set it up. His partner, Garey, owns a condo on Siesta Key, large enough to sleep twelve. So he let us all stay there for free for a week, during Florida’s high season. A pretty generous offer. So we all piled in, filling the bedrooms and foldout sofas and futons.

I am the youngest of this generation of cousins. The oldest, Patti, died in 2014, at the age of 92. I’m 42. That’s a fifty-year range in cousins. Most of the cousins on this trip are a good dozen or so years older than I am. At the very end of my visit, my cousin Sara joined us, with her two kids. I hadn’t seen her in decades, and I’d never met her sweet kids. Sara and I are closest in age, just a four-year difference. My mom was the youngest of four, nine years younger than her next sibling, my uncle Dick, who died in 2012. And she married in her thirties, after she’d been an aunt several times over for a long time. So I’m the baby, and everyone calls me Chrissy.

I like this. At home, I am the boss. I have a great partner and friend in Brian, but I am usually the one with Jack, making decisions, taking care of things and people, plants and animals. So it was really nice to have the break away from responsibilities. When I arrived, my cousin Janis (named for my mother) said, “You can do anything you want here. Especially if it’s entertaining.”

Barb had brought a puzzle, and I realized I hadn’t put a puzzle together since my mom died, fourteen years ago. So we leaned over the table in the sunroom, fitting pieces together, looking for matching patterns and edges. I realized, too, what good practice it is for making art, paying attention to color and shape and line. We shared old family stories. Ed brought out photos from his recent trip to Sweden, where he had met our cousin Alexis, who was due to arrive later in the day.

Alexis is a historian, and she has thoroughly researched our genealogy for several generations. She contacted Billy on Facebook, and the rest is, as they say, history. About six months ago, Alexis’ name changed from Bjorn. Coming from a close-knit family in a small town in Sweden, it has been a difficult transition from Bjorn to Alexis. The social changes, hormonal changes, and emotional changes have been a rollercoaster for her. I am only guessing, of course, but I imagine she was anxious coming to the U.S. to meet her American family, especially in the midst of these big changes.

Perhaps because of this, or maybe by coincidence, Alexis decided to invite her two best friends, Daniel and Kristian, a gay couple who live in Stockholm within subway distance from Alexis. I truly hadn’t given the matter much thought. The three “Swedes,” as we called them, had their own plans: a few days in Sarasota with us, then Disney World, South Beach (you see the thread?), and Key West. I didn’t figure I would see much of them, but I was very much looking forward to meeting Alexis, after interacting with her on Facebook. What I hadn’t expected was to fall in love.

Alexis and her friends were engaging, funny, gentle, and kind. They asked us questions about ourselves and our lives. They shared pictures from their travels to Australia, Southeast Asia, and India. We friended each other on Facebook, and Kristian found a picture of me with Jack. He asked, “Is this your son?” Yes, I said. It was the first day of school for him, and he was scowling at the camera. “He looks just like most of Billy’s childhood pictures, doesn’t he?” We laughed and agreed.

“The boys” and Alexis were funny, charming, and caught almost all of our jokes. Ed explained that most of the younger generation in Sweden grew up on American television. Sure, they had Swedish subtitles, but from a very young age, they heard American voices speaking English, so their English is nearly perfect. They caught idioms and jokes we wouldn’t have expected a European to get. A lively discussion about The Golden Girls one night sealed the deal. These were our people.

Over the course of the few days, we talked about family, religion, politics, and we were largely on the same page. We all gawked at the exotic birds and plants, marveling at the natural world like children. I realized that in a few ways, I had an advantage over my cousins. I had grown up in this part of Florida, so I was more familiar with the culture, the people, the weather. My mother’s parents, aunt, and sister, had also lived on the Gulf Coast, so I remembered a lot about their retirement and later years that my older cousins didn’t know. And they had earlier memories of my mom that I loved hearing about. By the end of my visit, I was referring to Garey and all three of the Swedes as my cousins. We all have families of blood and also of choice. I find myself extremely lucky to call some family both.

When I said goodbye to the Swedes on my last day, just before they left for Miami and I left for home, I teared up. I didn’t want to leave these wonderful people, my newest family members. I knew I’d see my cousins again, but how far away is Sweden? Barb and Janis and Barb’s husband, Dick, whisked me away on beach cruiser bikes, and I didn’t have time to be sad. We waded in the chilly Gulf waters (64 degrees that day), had pina coladas and snacks at the Daquiri Deck in Siesta Key Village, and then turned my bike in, before heading back to Tampa and the airport and home.

I was happy and relieved to be home with Brian and Jack, after the excitement of my Florida adventures. But now the world and my family seem a lot bigger than they used to. Just like the ending from The Bird Cage, I’m surprised by how big and how different and yet how similar a family can be. It makes me want to get up and dance.

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 gender — the social roles of men and women — but also sex (the biology of male and female bodies) 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.