Thursday, December 31, 2015

That Sweet Spot

Jude turned three on December 16. We marked the occasion in our own quiet way. Never a big family for elaborate birthday parties, we usually just do something small at home. Jude got gingerbread cupcakes, a doll stroller, and a very shiny very loud Elsa doll. She got to do trapeze after her teacher softly sang Happy Birthday to her. She yelled at us to "Stop" when we sang to her later that night. We looked at pictures of her as a baby and she ooed along with us.

Everyone told me I'd see when we hit the three year mark. Things would change. Things have changed of course. She's a three year old not a new born. They change with all kids. They grow from babies to toddlers to preschoolers to kids. But I don't think that's what people meant when they said those words to me. They meant things would get harder. I wouldn't see her as so wonderful. I'd notice her delays more. I might see some special magic things about her. She'd become more different basically in both good and bad ways.

I'm not going to list all the things Jude can or cannot do. I've not written much lately about our life together because I've started to really think about this idea of privacy. With Camille, I can field posts I write whereas Jude like all three year olds is a bit young to make those choices. I would keep my child's dignity intact and listing her developments would chip away at that dignity. In fact, I made a commitment awhile ago to not blog about my children's disabilities as much anymore. To make things general, to focus on my own disabilities, etc.

But, she's three, and I want to write about those words that felt like bullets in those early days. Those words made me scared when I laid awake at night. I adored Jude, and I worked  hard on eradicating the ableism inside me. In order to be the parent she deserved, I needed to change. But sometimes those words haunted me. Would things get harder? Would I be made to eat my words about liberation, freedom, and equality? Would I discover whatever magical thing came from Jude's 21?

As the days passed into weeks into months into years, I stopped worrying. Each day with Jude seemed like a gift to me. This baby I'd imagined dead inside me at one point, conceived after a miscarriage made every day a bit brighter. Just like her siblings did. There was nothing special about this ability. She just existed and that was enough. After my miscarriage in June followed by a tubal ligation, I held her even closer. Well as close as one can hold an independent determined three year old.

As the fall days wound down, I realized soon Jude would be three, and I started to remember those dire predictions. They made me smile a little because none of them manifested. Jude's life is still her own. She's developed into a self that is yes, sparkly and extroverted, but not because of her chromosome.  Life has not gotten harder. I don't wish her typical or without Ds. I don't look at my friend's kids and feel any mourning. Nor do they seem to remark on her difference. She is one of my beasties. I noted this in the aftermath of R's trapeze show. Jude tumbled around during the whole performance making those around her smile as we remembered me being hugely pregnant with her. Her teacher scooped her up afterwards to introduce her around. She has become a part of the community. Eased in with the naturalness of any kid who hangs around a place long enough.

And yes of course some days are hard. But really they were hard with all my kids at this age. It's a challenging age for any kid and it's harder sometimes because she doesn't always have the language to tell us what's up. That said we've all learned to communicate with Jude and how to read her body language. We've adapted and it's been fine. Sometimes when I feel worries creeping on me, I remember that adapting is what our family does best. All of our children have some neurological stuff going on from Autism to epilepsy to anxiety and depression. It's cool. We've got it covered. We've been adapting for years now. Long before Jude came along we mastered the art of listening to our kids, respecting their needs and then rolling with it.

In the end, I'm the one who changed. Things shifted for me. I learned much about acceptance over the last three years. I found a space in which to meet parents and Autistic people who shared my views on having a child with Autism. I read a lot about the early fight for disability rights. I've become involved in small ways in the broader disability rights movement, and in bigger ways in the body positivity movement. I've learned to recognize ableism as soon as I feel it and feel more than free to call it out in others. It's important because things are going to be hard for Jude if we don't change society. Things get hard when schools don't think our kids belong in "regular" classrooms. Things get hard when employees pay our kids pennies. Things are hard when we don't have reasonable independent living options for people with intellectual disabilities. Things are hard when we don't have a single payer health care system making it difficult for families to give their kids the care they need.  Things are hard when we continue to turn people with disabilities into inspirational memes instead of seeming them as the messy, real, people they are. What makes Jude's life hard has nothing to do with having Down syndrome. Jude's life is hard because of what people think about those with Down syndrome.

I keep hearing Morrissey singing "There's no such thing as normal." Cause in my family this is so true. Or maybe it's just our version of normal. For us there isn't such a thing and that makes life beautiful, messy and pretty much perfect.

Monday, December 28, 2015

Warning: Fat Girl On a Bar

I've been watching my girls do trapeze for three years at this point. Around a year ago, I realized I that I watched with a hint of longing. I knew from the moment I heard of Canopy it was something I would have loved as a kid. I always wanted to dance but I don't think there was even a dance school in my little town. Not that we likely would have been able to afford it had there been one. Plus I was never built like the dancers, I saw on television. While not a fat kid, I was not a thin kid either. Solid was the word I heard used and it fit. Strong too. I loved sports. Loved riding my bike. Loved climbing trees. And I loved spinning upside down. Watching the girls do trapeze showed that dancing didn't have to belong to one kind of body. In fact, the body I had as a girl, the ones my girls inhabit now, actually seemed fit perfectly. My girls are strong. Strong like I was when I was ten.

One day I realized it wasn't just a nostalgic longing I felt as I watched my girls climb and soar. I wanted to be out there on the mat.

But I was fat. Fatter than I'd ever been in my life except when with child. All the woman I saw out there were decidedly not fat. Yeah some weren't skinny but none of them mirrored my proportions. I've done a lot of things outside of my comfort zone this year in terms of moving the body. I tried belly dancing. I ran in front of about fifty Jr. High students. I refused to shun the pool because of who I looked in a bathing suit. But this idea, to take a class in aerial dance, pushed all my anxiety buttons.

Overtime I started to see that some of the younger kids were big too. And I watched the instructors treat them with the same respect and care as they did all the other kids.

So I just watched. I thought about taking a class. Talked about it a lot with Ann, Camille and Jude's amazing tutor, whom I trust with my feelings about my body. She encouraged me. Assured me I could do it.

"I'm not strong enough," I told her one day.
"The whole point is to get stronger," she said.
"I'm fat," I finally confessed the real reason I hesitated.
"So what? Trapeze is for all bodies."

I didn't really believe her. Didn't believe her for me at least. I believed her when I saw those big kids soar and work. Believed her when she worked with Jude and her low muscle tone. I just couldn't believe her about me because I didn't believe it about myself.

And then one day she talked to me about body positivity. The studio wanted to make sure they were getting it right. That moved me. Pushed me a little closer into that circle of trust. See my trust issues don't come from me not trusting my body. I don't trust many other people with my body. Especially exercise people. I am not unaware of how people feel about fat bodies. They think they're weak, and they mock them when they move. I always kept to exercise that didn't expose me to the gaze of others. No group classes. And if it was a group class, I tried to stick with things that seemed to fit my body. I don't knock this inclination because it's about being safe. My relationship with my body already fragile rests on a precarious line between loathing and acceptance. Ann, already stuck out  in terms of trust because she's a thin woman. I don't usually feel safe with thin woman. But Ann disarmed me. And when she came to me to talk about getting it right, I felt myself wondering again if maybe just maybe I could give into the urge to get on that damn bar.

Maybe what pushed me over that line came from watching my girls. Camille worked harder than I've ever seen her work this fall. Determined to do her routine with all the difficult moves, she put herself in Ann's hands and went over the moves again and again. Jude's sheer joy from trapeze reminded me that I once knew the joy of spinning and swinging. Jude trusts Ann as well. Completely with great love. Maybe I needed to trust them too. Trust that they would be okay with my fat body out there trying to do these things.

I signed up. My class starts next week and I'm equal parts terrified and excited. A very fat girl on a bar seems like an unlikely thing to me. But I am going to push away from the loathing to the accepting. Push through to trusting that my body can do some of these things. Perhaps people will laugh at me, doubt me. That's okay. I'm not doing this for them. I'm doing it for me. But I'm also doing it to say "fuck fear."

Thursday, October 01, 2015

Jude Learning To Fly

When Ann first took Jude onto a bar, she couldn't even walk. She loved it right from the beginning. Soaring through the air snuggled against one of her favorite people. Ann's always loved on Jude and Jude in return let into her special circle. But I expected nothing less from a place that embraced and accepted Camille. Even before we had our official diagnosis, they respected what I knew and worked with Camille's needs. She never got left out or treated different from the other girls but she had the space to do things as she needed to do them. That's pretty special in a world that all too often doesn't understand that inclusion is a dance between acceptance and accommodation. Done right and you have something so breathtaking beautiful you wonder why you haven't seen more. Done wrong, and you end up with kids who feel excluded while being included.

Canopy became a safe haven for us about two years ago when Camille took her first class. After a year of regular classes, she began to work one on one with Ann thanks to the amazing generosity of Canopy's board. I've seen Ann work with other kids and adults who have disabilities. What makes her stand out is a complicated alchemy of knowledge and intuition.  First, she's a trained special education teacher who uses what she learned in the studio. Second, she's a good human and she treats everyone the same. These kids and adults are taught the same the kids/adults without disabilities. She doesn't talk down to them. She doesn't modify the moves unless necessary (and she does this with all her students). She expects them to do great things. And they do. Because they trust Ann and Ann teaches them to trust their bodies. I've watched Camille go from being scared to even hang upside down to doing tricks that involve hanging upside while knotted in ropes.  Ann knows her students. She's taken the time to figure out what motivates them. What scares them. She knows their limitations and she gently pushes them but never to point of causing fear or discomfort..

And it's never just about one on one although that's cool if that's where you want to stop. Ann has always encouraged Camille in taking classes with other students. She didn't just drop Camille in the class, either. Instead she talked to the teachers with me so that we could help them to understand how Camille communicates. She gives them strategies to work with Camille as opposed to against her. In turn, Camille likes the classes and even more amazing to me, performing with the class. She's never the most chatty or the one who is in the center but she's there every week doing her part. And I think it's been good for the other students too. I've watched them react positively to Camille because her teachers and Ann react this way. No one rebukes her whe she stims (her newest one is to hang upside down and rub her head on the mat). When she cries in frustration not only do the teachers comfort but the girls also try to help. For them Camille is not an outsider but one of them no matter how different she may act.

When Ann said she wanted to work with Jude, I was very excited. I couldn't even imagine what she'd do with this wee girl out there but I couldn't wait to find out. Over the summer, Jude has blossomed as she's learned to climb stairs, swing on a bar (with help), do somersaults, and ride around on a scooter board. I love how Ann talks to Jude with zero condescension. She knows Jude understands her and doesn't assume that she doesn't just because Jude has Ds. When Jude's out there doing her thing, she's just another toddler learning to fly. Today I chased Jude onto the floor, where she managed to grab a bar and used it to climb onto a mat. Ann looked over at us (she was working with Camille) and said "You know she's totally ready for the Sunday class." The Sunday class where the under fours go with their parents. The next step to the PreK class. A class I am assuming Jude will do if we're still in Athens. Of course I knew this would happen because when I told Ann Jude had Ds, she said "Oh how wonderful. My best friend has Down syndrome."

Who knew that we would find true inclusion in an aerial dance studio? Among the robes and bars, the silks, the yoga balls and hula hoops, we found a home for our girls. Canopy knows how to do inclusion in a way that very few places do including most public schools. In addition, to the outreach they do with people with disabilities, they also do a lot of networking in the underprivileged neighborhoods in Athens including one that houses Hispanic immigrants. Ann and Melissa talked to  me a couple of months ago about how they're adding a body positive aspect to their teacher training as well. They're not just offering their magic to those with loads of money or ability. They're offering it to the world.

Dancing in the air might sound like not much currency. Yet after three years in this wonderful place, I can tell you that it's worth more than one could imagine. Camille and Jude both grow in confidence with each session. They take this confidence outside to the world secure in their strength and their difference.

If you feel so inclined, Canopy is a nonprofit that takes donations to help with it's many outreach problems including working with children with disabilities. Donate here.

Thursday, September 24, 2015

Autumn Tidings

When I studied Wicca many many years ago, one of the many useful things I picked up was a tie to the seasonal wheel. While I understand that Wicca as with all religions is a kind of story, I loved this imagining of a time when religion flowed with the seasons. Perhaps it also explained my later attraction to Catholicism which also tends to flow with the seasons although in a less acknowledged way. But regardless, I loved how the rituals celebrated not just physical markers of change but the way that we could think about those changes in our inner lives.

Over the years, I lost touch with these shifts and groanings of the Earth. Having been in the South for the last 14 years (I know!), much of that spent in a city, I didn't feel in touch with the seasons as I did in Maine. Mabon came on Wednesday and my plans for collecting Autumn items meet the reality that there were NO autumn items. We've only just begun to feel the promise of cooler days here in Georgia. Autumn really won't come until mid-October. Maybe later. In this different accounting of seasons shifts, it was too easy to lose touch with a cycle that seemed more suited to Maine's rural setting and more definite seasonal shifts.

But this losing touch wasn't a mere aesthetic loss.

I've recently begun to keep a creative journal. I find the process of being able to be artistic in ways not involving writing to be the perfect warm up to writing. In addition, I've become more creative about how I express my emotions, and this Autumn I need that space. I already know it's going to be rough. On Monday, I sat down with the beasties to do some creative journaling which is how we start our work days. Without much thought I found myself planning my ideal Mabon ritual. One that would never materialize because there are no Autumn objects to find. Yet. But more importantly as I  crafted this ritual, I began to think about the way my emotional seasons mirror the physical seasons.

I talked to H about it. I started to think that perhaps losing touch with this circular movement made me lose some of my coping mechanisms.

And then a lovely friend put up this quote on Facebook:

"It is the time of balance between day and night, before night takes over and brings the coming winter, a time of darkness and death. This duality between light and dark exists within humanity, and in the work of spiritual transformation. All things must die before they can be born, all spiritual ascent requires descent first, and all those who long for light must firstly face their own inner darkness and overcome it. The autumn equinox symbolizes a stage of inner preparation in the process of enlightenment - to make way for the Son to be born within the winter solstice." Taken from The Path of the Spiritual Sun

I love Autumn. Of all the seasons, this season speaks to me. I love the coming cold, the ways the leaves flame before they fall, the cold rainy nights. I love the holidays: Halloween, Day of the Dead, and Thanksgiving. There is a comfort in the preparation for the coming dark. The way we shore up against winter's cold winds. But for me it's always a mixed blessing because Autumn means winter comes, and with the shorter days my depression grows. I make it through Yule and Christmas because these are joyous days but January. Oh January.

As I thought about Mabon, and that quote I realized that while I might not be harvesting actual crops, I could be seeing this time as a way to harvest up the things that make the dark bearable. Survivable. What could I plant now in the sleepy warmth of the dark earth? What things did I want to face about myself? Things that I wanted to change? What could I let germinate in the dark and see reach fruition in the Spring?

So many things:

writing with a wonderful hecticness in November
pumpkin spice EVERYTHING
the joy of Yule and Christmas
long days of knitting
the outlines for the other novels  taking over my dreams.
working on my drawing which gives me so much pleasure to improve.
reading. So much reading.

What did I want to get rid of?
my insecurity.
my anger at least when it's not of the righteous kind.
my self absorption.

And I thought how I wanted to not just harvest that above list, those things that give me so much joy but also to plant the seeds they drop. I imagine them germinating throughout the winter and rising in new and unexpected ways come Spring.

And how I want the second list to be cut down like the Sun god or the Son and began to grow new things to replace them as we turn through January.

Last year I took a big step in taking care of myself during the winter. I didn't commit myself to too many social engagements. I warned my friends that I hibernated during these times and that while I loved them I might not be out as much. I accepted that some days a good book in bed beat forcing myself to be productive. I watched too much TV and knitted. And by the time April came, I felt rested. This year I will again do what I need to take care of myself but I'll also remember the things I have planted, and the things I need to face in the darkness of change. A good darkness, I think even if it's a painful one.

Wednesday, August 19, 2015

A Meditation on Getting Old

Today I turn 43. It's not one of those magical numbers that hold any kind of special meaning. It's not 45 for example, or 50. But it's past 40, and it's easy to remember a time when 40 seemed so very old. Like many young people, I romanticized not living this long. Unlike most young people, I also fantasized often about suicide, and engaged in a couple of half hearted attempts. A healthy terror of death kept me from making too deep a cut or swallowing too many pills. I wanted to die but I also dreaded what might lay beyond. At twenty, the thought of making it another twenty three years filled me with a kind of horror. Another twenty three years of this shit, I would have thought, is not worth it at all.

At twenty, I moved to Rochester on the whim of being madly in love. He wrote me romantic letters filled with scraps of poetry on handmade marbled paper. I would hold those letters close to my face and inhale the scent of paper and ink. I think now I was in love with the idea of him. The romance he created in distance wooed because the reality of him was not that wonderful. But there I was in this ugly city filled with strangers. A lone. And as always achingly sad and longing for something. I celebrated my twenty first birthday in that city surrounded by people who were not really my friends but just some people that kept the loneliness at bay.  That night he was with his wife. I wore a black lace dress he had bought me. Vintage, 1930s. Frail and lovely. I wore it with black combat boots. My black hair cut into my first stylized bob. I bought a bottle of Love My Goat red wine, and drank the whole bottle myself. I sat drunk on stoops surrounded by young and achingly beautiful humans. Someone took my picture with a white rat on my black feathered hat. Twenty one seemed like an awfully lot of years.

I woke up the next morning, my head aching. My dress crumbled on the floor of my sad bare room.  He of course was not there. He was never there. I felt this unbearable crush of despair. I felt hollow. After that day a lot of drinking filled my nights. Not much eating. Lots of strangers beautiful and otherwise. I just wanted to lose all feeling, and I did for the most part. Everything but the anxiety and fear. I didn't love him anymore. The first wave of intoxication washed away in the reality of him. I played along because I didn't know what else to do. But I suffocated in the longing for something I didn't know. A longing that followed me for so much of my life. Twenty three more years of this would have destroyed that hollow girl.

I woke up this morning to hushed whispers and cries "Don't come out yet mama." Imagine me with five kids. Beautiful, wonderful, quirky kids. A gorgeous husband whose love was not made of paper and ink. When I came out homemade cards and "Happy Birthday." A romantic poem translated by my lover and partner. A poem hand crafted in water color and parchment and filled with the smell of art. These things don't go up in ash. They don't leave a bad taste in my mouth. They are not a crumbled dress on the floor of a bare bedroom.

Being old is going to be okay, I realized as I hugged my children and kissed my husband. Being old with these people is like a bright prize won for no reason at all. Even though the deep hollowness of depression never went away, these people make me want to cope, they make me want to look for other ways of walking through the forest. After all the fairy tale forest is brighter with their laughs and their flickering lights like fairy lights leading me deeper into enchantment. Today I will grow old with no regrets. I will not wake up tomorrow to the feeling that twenty more years is too much. Twenty years is not enough. Time slips too fast through my fingers because it can never be enough with this kind of love.

Tuesday, June 16, 2015

If One of Us Falls

Piper fidgets as I pull her dark hair into a pig tail. Today is her spring trapeze show and it's been a full year since she last performed in front of an audience. We always miss the winter show due to sickness.

"There were a TON of people last time." she says, jumping up as soon as the elastic snaps. "You said there would only be families." She twirls around the kitchen her pig tails spinning to the sides of her head.

"It was just families." I reply. "You'll be fine." 

"There's only two of us." she answers getting to the heart of what worries her.  "Wonder if E doesn't show?"

Her friend and classmate E does show. They run off together to the backstage where they will paint peace signs on their cheeks. They will bound onto the mat, the two of them, to perform an amazing duet to "Spirit in the Sky." And when they finish to the applause of the audience, they will glow.

After the show, Piper tells me "We had a plan if one of us fell off the bar. The other would wait until we got back on." 

I don't often write about Piper and trapeze. Piper started the family trend almost two years ago after a field trip with Freedom To Grow. I, overjoyed that finally one of my kids wanted to do this, signed her up the next week. Piper took to the air with her usual enthusiasm. I waited for it to dim as Piper tends to cycle through her interests in ways that resemble my own. Great passion and borderline obsession followed by a lost of interest and a move to something new.  But that didn't happen for Piper. Instead, even when things got tough she plowed through until she found the joy again.

Piper is our anxious child. The one who had a series of panic attacks when we first moved to Athens. The one who frets about the night. Monsters. Every ache of her body is a cause for concern. But in trapeze Piper transforms into something entirely different. She unfurls her wings and takes flight. She pushes herself until she masters new moves. I've watched her practice with hands aching and red from holding the robe. Watched her breathing become heavy because she refused defeat in the face of challenge. Trapeze makes Piper stronger. It calls to the courage deep within her and helps her to express it in the muscles of her arm, the way her legs spin around a robe and a bar. Trapeze transform Piper into her best self giving her the power to bring that self out out into the world.

There are no doubt many sports that could have pushed Piper out of her anxiety shell. I do think that exercise helps us to feel our body in the world in a less anxious way. But I also think the key to why trapeze works so well for Piper, and for our family, lies in two girls who made a plan to lift to each other up instead of tear each other down. My family, as so many of you know, are anti-capitalist which means we actively attempt to eradicate certain features of a capitalist society from our life. One of those things is competition. This is not an easy one for me as my insecurity tends to push me to compare and then to want to compete to be better. I've tried very hard to be conscious of not passing this onto my children especially Piper. I suspect competition is the kind of thing that could sink someone with anxiety. 

And I admit to being nervous when Piper started. I had to rein myself in from comparison which I never expressed aloud but too often thought as I watched in her class. I worked to weed it from my thoughts as part of my work on not comparing or ripping down others. Piper didn't need to compete against her classmates. She never once expressed jealously and instead celebrated her friend's triumphs. Her teachers never encouraged competition and I admired how their emphasis on team work wasn't inspirational word fluff. I saw it in the way the teachers performed. They lifted each other up, stepped back to let others take their turn to shine, and showed genuine appreciation for each other's work. 

For Piper, with her all her bottled up anxiety, trapeze became a place where the only competition came in the form of pushing herself. Today I watched as she worked with a new group; all girls who  more advanced than she. They worked on a metal cube something Piper has longed to do for awhile . At some point, Piper was standing and I watched as she asked Ann if she could practice some moves on the bar. Ann lowered a bar for her. Piper had told me earlier she wanted to master a move called the Tango Turn. And that is what she did for a good twenty minutes. Again and again she went through the move until her face grew flushed and her hands red. Even then she didn't stop. I realized as I watched her that she didn't do this to be better then anyone else. She did this because she wanted to be better for herself. To prove that she could do this move. To push her body to it's amazing potential. At trapeze there was no one to beat. There were only others, including oneself, to pick up if they fell. 

Friday, June 12, 2015


When she says "I'm sorry honey there is no heartbeat," I am not surprised. I knew from the first ultrasound that something went wrong. I nod, brusquely and say "Well it's not as if we planned this pregnancy." And I tell myself that it's for the best, really. Then I go and sit among women who happily hold ultrasound pictures of their live babies. Babies who will likely continue to grow and be born. I feel the emptiness yawn up in me. My poor fetus didn't make it to six weeks. I hold it together until I hit the exam room where I proceed to sob silently as the nurse quietly takes my blood pressure and weighs me as if nothing is wrong. When the midwife arrives, I am relieved to find it to be the woman who delivered Jude. She holds me while I cry and I feel validated in the conflicting emotions between relief and a deep grief.

"You have some choices." she says. But none of the choices are the ones I want to make. I ask for a week.

The next few days are difficult. I have to tell everyone I am not pregnant. Not really. I shouldn't have told anyone. I end up being more public that many think is prudent but it's easier to tell a mass of people instead of waiting until I see someone or until I'm asked. Still there are many people who do not know and what follows is a awkward exchange where I have to explain that I have a missed miscarriage.

Perhaps that is part of the pain and the awkwardness. I haven't really miscarried. Nothing has come out of my body. Instead I still feel pregnant. I still have the bloated pregnant belly. I still have morning sickness. And when I tell people what happened they assumed I have miscarried. Not that I am still carrying something, what I don't really know, in my body.

Still everyone is kind. And women whisper to me that they too have visited this place. There are the warm touch of hugs and compassion. It keeps me moving through the daily rhythm of my life.

At night, I wake up on the edge of panic attacks. Dreams of doctors coming at me with knives. I hold Jude when I wake up and soak in her babyness.

During the day, my rational side keeps me afloat. We didn't plan this baby. Jude was supposed to be our last. We don't have the room or money for another baby. But deep down I still mourn what could have been. We would have made it work just as we made it work with them all.

As my week deadline draws closer, it's clear that I will need a D & C. I choose to not get an abortion and here I am basically walking into what is similar to an abortion. The universe sense of irony is cruel, I think.

On the day my week is up, H and I walk to the midwife clinic. I am tense and angry meaning we argue before we leave. As we get closer, I start to cry. I am not going to this place to hear a heartbeat as I did with Jude. When we arrive, I go through the routine as if I was pregnant. The wait is agonizing as I sit among pregnant women. I cry silent, burying my face into H's shoulder. When the newborns come in, I tell H that I am going to leave. Their tiny cries pierce through me. The thing in my womb will never cry these hungry cries. I carry something dead inside me, I think. I cry through the weighing, the blood pressure check and when the midwife comes in to talk to me. Again there is compassion and wisdom, and eventually there is nothing left.

The doctor arranges for a D & C the next day. It is so soon but I am glad. I need to be done. This half way road is not leading towards a good place. I need the completion so that I can began to process and heal. To put behind me my fertile years and focus on new stages of life. I am lucky I know to have five children at home.

The night is spent in nightmares again. The doctors tell me that there was something living inside me but they made a mistake and now it's gone. It is my biggest fear even though I know the fetus never even developed a heartbeat. I saw with my own eyes the lack of change in a two week period. But my subconscious plays tricks. I go into the hospital tired but resolved. Calm. Once again I am meet with gentleness and compassion. People are kind when they hear what I am there for. My friends love me and I feel their love and support as I wait to be put to sleep.

I wake up clam and alert. I even get into a debate about insurance with the nurses. H comes to me and we chat about the kids. I don't feel any pain. I feel almost high. I feel guilty like maybe I am betraying the future I just loss. The nurse gives me the care instructions and I say

"This is like when I gave birth." And it hits me just a little then.

"Kind of, " she says, "But it is different."

Different in that I am not coming home with a newborn in my arms.

We go home and I embrace the present in my children. I smell Jude's warm hair and laugh at Rowena's antics. I marvel at the man my son has become.

When I wake up from my nap, I notice that my stomach is no longer bloated. Then I feel the first twinge of grief. My stomach will no longer feel that swell of baby. The kicks and the flutterings. I realize I don't feel sick any longer. As I wobble around, I feel like I did after I gave birth but there is no gift for the pain. No sweet baby to hold to my breasts. I have given birth in a way but it's a birth that we only whisper about, that we pretend isn't a birth. A grief often dismissed because it was early on, because you already five children at home, because there was never a heartbeat.

But there was something. A flicker. A story. A future to imagine. And now that is gone. So while I mourn the end of my fertility, I will also give myself the space to mourn the baby I had began to want. The future I imagined in a tentative Amazon wish list and in the plans for a bigger van. I will hold this future with me forever really because even though that heart never developed it still is imprinted on my own cells.

Wednesday, April 22, 2015

A Town in Georgia

Sunday evening. Sky still gray from those southern spring torrential thunderstorms. Driving the now familiar route from the little red brick ranch we call home, past Athens Regional where people scurry from the cold sterile hospital corridors to the parking deck. Down Prince where a cluster of fast food joints mar the entrance to Normaltown. Wait at the light that lets me turn down Chase. Past the medical complexes, the local elementary school, a new costume store (Guise and Dolls), and then onto a road of industrial architecture. A plumbing company guards the tracks, and then the opening of the old warehouses transformed into a miracle of wonder: yoga studios, hairstylists, homemade rap pops, art studios, and the place we come to the most often: Canopy. Trapeze. Ariel dance. The high space that has transformed my daughters' lives in wonderful ways. Maybe mine too.

Tonight I stand with a clipboard and a tiny plastic container filled with blue paper tickets, the ones you used to use to get into the movies. Admit one they say in black ink. I chat with the people as I check off their names, making sure to hand tickets to the children. Having your own ticket to hand over adds to the magic of what is to come. Unlike the last time, I performed this job, I recognize many of the people who come through the doors. Some are wonderful people on their way to becoming friends, like Ann whom I last saw waiting for the baby who is now earth side. Others I recognize from Facebook encounters. Most I just know from around town: stores, festivals, shows. Athens is still small enough to allow that familiarity. One woman, a local doctor we meet at a lawn sale, tells me she saw H walking with the kids on Saturday.

In the midst of all this checking in, the magic seeps out into the hallway. The Fourth Doctor complete with scarf scurries about and I hope he offers me a jelly baby. I always love being backstage. Performers in various states of costuming rushing about trailing behind some of their secret spells mingled with the kiss of real life. People I know from so many hours spent watching my girls practice on the bar now transformed into super heroes, comic book characters and scifi movie personalities. The magic weaves its spell before I am relieved of the clipboard and urged to find a seat which I do towards the back under the silver pole that extends from ceiling to floor.

Inside the studio, the space is wide open and even though the ground is on the small side, the up extends high enough to make you feel free. I love the industrial feel of the black steel cross beams that hold the knotted ropes from which hang a multitude of bars but also silk drapes, ropes, and iron ladders. Tonight the windows that line the top of the outer wall have been covered, and when the lights turn low darkness falls. The music swells, and the crowd tenses in excited anticipation. A glad cry rises as the performers no longer the mundane teachers we know march out onto the floor.

What follows is nearly impossible to describe in words, or perhaps it's just that it would be too many words. For the next two hours, I watch the human body do amazing, magical things. Bodies twist and propel on bars, held up right with just arms and legs. Women hang from bars with just the top of their feet. Superman shows a vulnerable side with what can be described only as a dance with two silk drapes. Cat woman steals a diamond bracelet after walking a tight robe. A charming, funny routine happens with two steam punk beauties on a steel ladder. Wonder Woman and her invisible jet leave the crowd cheering with an impressive display of acrobatic feats including the jet bouncing and moving Wonder Woman with her feet. The woman who do the Star Trek portion create a dance with robes and near perfect symmetry. Everyone performs with grace, strength, and a perfect sense of drama.

What occurs to me as I sit there like a little kid with my mouth open, lost in both wonderment and envy, is that this moment encapsulates what Athens means to me. There was a reason my main characters meet at Canopy. When we first moved here, I described my ambiguity about the town as loving the town but not feeling the people. I struggled with a heavy depression, and a profound sense of isolation and loneliness. While it took years to make friends in Charlotte, I had made them eventually, and relocating to Athens started that whole process again. But my heart loved the town even in the midst of that sadness which hung over me. She won me over with her charming old houses, her quirkiness, her sense of rock and roll.

And somewhere along the way, I started to make friends, connections. People knew me in stores. When the girls started to take classes at Trapeze, I found myself loving their teachers not just for their wonderfulness with my children but because of who they were as people. And this happened at other places. Treehouse Craft. Freedom to Grow. I meet wonderful women at these places: Kristin who had the vision for an amazing toy store that taught art and crafts, Mary Katherine who embraced Piper and taught her to sew. Hope the beautiful, gifted artist who won Camille's heart in one class. Michelle whose artwork blows me away and who taught Rowena to take risks. Ann who worked with Camille, drawing her out and planting in her a desire to go ever further with trapeze. Ellen who is not just a business manager but a friend and a comfort. MJ whose words gave me the final push to try trapeze myself. Megan who got Rowena to flip upside down. Lora whose dream of unschooling so closely mirrors my own. And so many other woman who have made me see Athens is more than just it's spirit but also it's people.

As I watch the display before me, I feel that warmth, that joy, that exuberance for life and art and beauty. It is a special place. Not just this studio but the whole town. I remember a man once told me that Athens holds special children and I thought later that Athens allows children to be special, to be more, to be magic. It does this for us all if we just let ourselves get caught up in the splendor of it's soul. And after the show when I congratulate the performers and get to have some magic rubbed off on me, I think again as I always do how this is a place to nourish my own creative self. I want to stay here and grow roots in this glittery sparkle stuff that makes amazing things grow. I want Jude, who someone once told me was like a superstar, to grow roots here as well. And Camille. Here where their souls are honored not because they are the same but because they are different.

Friday, March 20, 2015

A Day In the Life of Jude

When I first wrote about Jude, I included a bit about my fears for the future in regards to our family. I spent a lot of time imagining how very different our lives would be. I found myself dreading some of the things I thought might be mandatory. And I worried that having a child with Down syndrome would disrupt our rather bohemian life. While having Jude has brought change and new considerations, the change has not been earth shattering. Jude fits us so well and she fits into our lives as we fit into hers with perfect ease. The adjustments we've made have actually made our lives richer and pushed us more into the community. 

Tuesday, February 17, 2015


A couple of weeks ago, two stories flashed through my Facebook feed. The first time they sped through and I moving through the paces of life missed them. The second, third, fourth, times they caught my attention. Stories on plus size models usually do that for me. The first about the FIRST SPORTS ILLUSTRATED SWIMSUIT MODEL automatically had my eyes rolling far back into my head. She's a size 12. Plus sized. When the second story, hit my feed, I almost didn't open the link to the story. From the thumbnail, this plus size model didn't look plus sized. But always on the look for some distraction, I hit the link and loo and behold here was a model who had my body.  They are both beautiful woman. And I guess technically if you're a double digit you're a plus sized human.


I already feel like a monster. My body takes up too much space. I sometimes find myself curling my arms around myself, pushing myself into corners to ease the worry I imagine on people's faces when they see me enter a small store or restaurant. I carry wounds from the past, sometimes not so distance, of being mooed at by adults in Walmart or from cars. Jr. High taunts of "lard ass," "pig," feel like they hang like labels on my body. A life time of looking in the mirror and never seeing a body worthy of love, praise or acceptance.

Is it any wonder, I think, looking at a model who in my mind is safely in the slim category, that even when I hit a size 12, I see a fat woman in the mirror? That I still walk the world feeling ungainly, lumbering, obstructive? Even at a weight I find acceptale, I have been told by doctors that I am too big to be healthy. A size 12 for the rest of the world is fat. Period.

And what does that make me now? At a size 18, I am clearly in the monster category. I am a giant among women. Shameful and disgusting. Or so I am told. I am regulated to special stores who only in the last ten years began to carry clothes that were sexy and lovely. They cost three times as much as Target but at least it's a whole store and not a tiny corner hidden from the "normal" clothes. Models my size are mocked on line with a cruelty that leaves me breathless. When I dress up, I sometimes still have to push aside that I don't deserve to look attractive because my body is a monster. Monsters are not supposed to be pretty or sexy.

I do not write this to garner sympathy or to hear about thin bodies being mocked. I am not unaware that all women's bodies are policed. I write this because the reality is that when slender women are held up as plus sized, we not only continue to push a very rigid notion of acceptability but we make other women's bodies monstrous. I am 42 years old, and I have dieted my whole life. I have starved my body, purged it, exercised it to exhaustion doing things I hated. I have hated this body, mocked it, sliced it open in disgust. I misused it. I tried to pretend it didn't exist. It was never a good enough body. It was never thin enough. Never pretty enough.

As I walked through life trying to make myself invisible, I could never imagine myself as anything but highly visible. Last year a woman published photos of herself with people reacting to her weight. Many many who commented said she imagined the reactions, that she was just seeing things that weren't there. There were other stories. But what many missed was that this was this woman's story, and as a fellow fat woman I knew the story well. I knew the looks and snickers of young college girls when I shopped. I knew the jokes about weight coming from men who were often bigger than I. I knew the pain of having women flirt with your husband in front of you, not that you weren't invisible but that you were so insignificant that you didn't matter. Eventually these moments add up and become the narrative even when the words are not being spoken.

And I woke up a few months ago, done. Done with the constant self hatred that I carried on my shoulders like a yoke. Done with the paranoia of worrying what others were thinking when I eat or shop. Done with worrying if people were mocking me. Mostly I was done with the years and years of self abuse. I started to buy lovely clothes. And I dressed the way I wanted to dress not the way that society deemed OK for a monster. I started to wonder if maybe I was sexy and beautiful in this monster's body. And eventually I started to think that perhaps I was not a monster.

Monday, February 09, 2015

Qutting Isn't Easy

The words from the message haunted me long after I shut my computer down. During the conversation, I had been able to show a disregard, a carefully calculated distance.

A new PhD program? Pfft. I was done with the academy. Over it. Moved on.

But later that night as I lay in that inbetweeness of sleep and awake, I started to make plans. I could retake my GREs. H wouldn't mind do some teaching jobs while I did my thing. Umberto would be old enough to do some babysitting if we had gaps. Surely I could juggle therapy and class schedules with a little magic. Only when I felt the tears starting to form did I snap myself out of this hazy dream world.

For a few days, I walked around with the heavy load of failure. I joke often that I am an academic failure but like most jokes this one has a stinger. If I had my PhD, I could rely on the evidence that on the impossibility of tenure especially for women. But I don't have that piece of paper that at one point represented to me the pinnacle of success. Instead, I was the person who couldn't even get her foot in the door for a more noble failure. When I told people that I was not accepted into a PhD program, I imagined that I could see in their eyes my own thoughts: She wasn't good enough. She wasn't smart enough. Of course time dulled some of these feelings, or at least help me push them into the background of my life.

As time puts distance between my academic past and me, I found myself still floundering. I no longer posted on my academic friends post and when I did I offered apologies for my ignorance. At some point, I stopped reading academic books because it felt like torture: launching myself into something I loved but from which I felt utterly disconnected. I no longer imagined myself as a free range academic because without a PhD and an institution no one was going to make my work seriously. I alienated myself and struggle through this gap of wanting and not wanting.

When I woke up the morning after that message exchange, I realized just what I had lost. There are few things I can list under what I believe. Belief is a horribly problematic word and concept. But I do believe that we humans are meaning make machines. All of us find ourselves constructed by stories, practices, and significations. Some of us have more power than others to shape those constructions of course but we all engage in this activity. Usually unawares. For the last few years, there is a part of my life that feels in stasis. Unconstructed. The part of myself that I saw as an academic was a part that had been built upon for many years. Boards laid in place through encouragement and amazingly enough rejection.

See, my original plan from the time I was ten or so was to be a writer. I tried my hand at publishing when I was in my 20s and like most early writers faced a landslide of rejection notices. When I was 23, I applied to the creative writing program at a local college. Not only was I rejected, I was rejected after receiving someone else's acceptance letter. After all these years, the feeling of joy when I read that I was accepted only to go on and realize the enclosed story wasn't mine still aches. I imagined this some other person sat at her kitchen table reading MY rejection letter.  I remember when the head confirmed the news, and said as a consolation "We felt that you would be successful at many things not just writing." At the time that felt like cold comfort. I walked around in a fog of pain, insecurity, and meaninglessness. The yearning to be told if I was good enough had been meet with a resounding no and now I wasn't sure if the knowing helped.

But this time I got lucky and a professor commented that I was smart. A horrible writer but smart. I believe his words were "I don't know how someone as smart as you can have so many grammar errors." But it was a lifeline and I took it in my hands like a drowning victim. For the next 15 years these words followed by others shaped me into an academic. Of course I struggled with that nagging insecurity but it was something. I was something. Somebody. I had purpose.

The first rejection letter stung. But when the U of Toronto letter marked my final rejection, I felt the same way I did when I had to sit with that department. Another confirmation that I was indeed not good enough. You wanted to know I taunted myself because I house a deeply mean inner girl. Fortunately this time around I had other meanings built up. My family. Homeschooling. Things that were vital and important.

However I still floundered because there was this piece that felt missing. I tried religion, and for a time it worked. I imagined myself getting into theology or counseling. But the problem of not really believing (and yes I know the word is complicated) kept me at a distance. I tried to engage through practice but it felt fake and awkward. I tried spirituality recently with the same results. I am not a religious person anymore even though I still find religious things deeply fascinating. There was no building me into that religious person. I dipped my foot into the being the "disability mom" but that didn't fit either. I don't like making so much of my meaning rest on my children. Icky.

Lately I tried writing. I finished a novel. I think it's okay. And I realized when I got the news about a potential graduate program close to me that something important had shifted in the last six years. There was an identity in that space; one that scared me yes but it was there. I wrote my novel in a month. A month of frenzied, wonderful, exhilarating writing. Editing has not been meet with the same enthusiasm. It is February and I am only 30 pages into my novel. In December, I told myself it was the business of the season. Exhaustion from writing so much so fast. The drudgery of five six kids and a six mama. But by mid January I admitted it was fear. Wonder if my novel was so horrible I couldn't even read it? I couldn't bear the thought. Still I pushed myself one to day to read. And yes there were some major problems but it was a solid story. I pushed further and realized I still loved my characters, and loved my plot. Tentatively I began to sit more firmly in the idea I was a writer. An identity I had shied from since that long ago rejection.

Over the last few weeks, a few incidents have popped up that make that old insecurity crack open again. Fears that I am foolish and presumptuous to take on the title of writer. Fears that the local college had it right in denying me the title writer. Graduate school became something else in this moment of fear. It was the second choice. Something I knew and felt comfortable doing even as I felt I was not good enough. A chance to prove myself and make a claim about worth. Graduate school for all it's shit did a fairly good job of giving me constant feedback about my place in the world. Being a writer does not offer these same comforts. My blog doesn't get enough hits to give that kind of feedback. No one who has read my work has come out and said "Wow you're shat time to move on love"  but they've also not said "Wow you have talent. Keep writing." And slowly I am starting to think that even if someone did say these things that this wouldn't be my defining moment as a writer. While I don't buy into the ridiculous notion that we give ourselves meaning, I am sure that my identity as a writer comes from having stories to tell not necessarily from having admirers. And for the first time, I feel that the academy does not get to be the end of my story.

Saturday, January 17, 2015


My memories of my Grumps are often hazy. I have lived away from him for along time, and now he is gone. When I search the recesses of my mind, I don't remember him as a chatty man but then if I push I remember his words and his deep voice thick with that Maine accent. Because of time, it was all too easy to remember not being close to him but with the memories of his voice came the memories of doing things with him. Riding beside him in a green truck with a big white stripe to visit his mother, my great grandmother Sarah. Sometimes he'd stop at one of those general stores that only exist now to lure tourists in and buy me penny candy. I remember sitting on his lap while he sat at the kitchen table. I used to help him do chores from cleaning out his work truck to helping around the yard. I can still remember how his Lucas truck always smelled like oil. I remember that he used to give up his space in the bed so that I could sleep with my Grams when I spent the might. Or how he would carry me inside after a long car trip, and I'd pretend to sleep. I remember that he always smelled like Old Spice, and that when I was old enough to buy Christmas gifts, I would always get him Old Spice gift sets. He always acted thrilled.

But the story I like the most about my grandfather is the only I can't remember. I only know the story because he loved to tell it. My earliest memory of the story starts with me leaning against my grump's leg, and saying "Tell me about the bathroom when I was a baby!" And he looked down with a grin.

"One night I woke up," he began, "Because I could hear you crying."

"I cried a lot right?" I interupted.

"Oh yeah," he chuckled. "You cried all the time except when Ginny was holding you."

And I'd turn to smile at my grandmother. 

"Well that night you were crying, and you just wouldn't stop so I got up to see what was going on. I walked down the hall and the crying got louder. I thought "why is the baby in the bathroom? I opened the door, and there you crying your head off in the tub!"

"The tub was full of clothes right?" I asked.

"Yup, and you were right there in the middle with your face all red and you were mad."

"What did you do Grumps?" I asked

"I picked you up and brought you to bed with Ginny and me." 

Monday, January 12, 2015

January Is Coming

"We should get that fur coat from the meme, and make one that says "January is coming." H jokes, and I am able, now, to laugh a bit. We watch each other across the sleeping bodies of the two babies still caught in that tender time after an intensely emotional  moment. Only recently have I been able to voice to H that I am finally falling into that not so sweet melancholy of winter. He always knows. Guesses when I start to develop my extra prickly edges. He reads it in my refusal to go out and do things; in the way I sleep just a little too much.  The problem with naming is that it brings the thing you'd rather avoid to the forefront, and while we get better at discussing the beast in my head, we still fumble in the beginning. H wants to fix, to make me better which I think is a pretty typical response, and I fall into the self imposed patterns of guilt...

Why can't you just be happy?

After 15 years of being together, we both know that I will come out okay. Spring will come just as winter does, and in the moist thaw when the buds of flowers stretch out of their tightly wound folds, I will stretch my own self in the warm sun, the rain, the fecundity of life. But the fear comes in that we both know that in my past that coming out wasn't a promise, and that sometimes, in the claw of my beast, I made not so wise choices. Dangerously bad choices at times. However those stories are in the past, and the pages before us our only half written, and tell of joy. I realized a few years ago that the darkness is never fully dark. If I peer closely, allowing for eye adjustment I can see the white hazy lines of joy.

The answer is that I can be happy. beast always pads besides me. Quiet and waiting.

Last year I spent a lot of time exploring my own contours. It's been awhile since I spent time examining my own, what? Psychology? Mind? Those are all hideously inaccurate terms but they are what I have in our limited lexicon. I strolled through forgotten gardens, and long abandoned walkways. I swept the cobwebs off old memories. Those things which I thought were dead were not so dead. There is power in the things that one thinks are dead. But I had a new magic with me. The magic that comes from time to heal, time spent learning new ways of being in the world. Magic in the form of innumerable moments of joys. Spells cast unknown with each moment spent in the fullness of love. When I blew the dust off an old tome from my past, the hurt was the twinge of a phantom pain as opposed to the fresh pulsing of a new wound. I learned some new ways to approach the past, and through that the always present beast.

As I sailed through December buoyed by the Christmas season, and then caught up in weeks of colds and runny noses, I could feel my beast coming. Or perhaps just the nudge of a head under my hand the way a cat casually reminds you that they exist. As I felt the bump, I began to ponder something which had been gathering form in my mind for months now. What if one accepted depression the way that one accepted other neurological differences? I admit it's a thought that still leaves me cold, gasping, terrified. But I realized as January loomed ever closer that what I had thought of as acceptance was not really acceptance. The way I drowned, fighting and clawing for the surface, in the depression was not an acceptance. It felt like being pulled by a swirling eddy, a force beyond my control. No this time I wonder what would happen if I treated myself as the depression came not as someone who was ill or crazy but rather as someone who deserved care and love. What would happen if I saw the depression as not some alien thing but as something a part of me? What if my depression wasn't a monster but a beast? A beast that I don't fully understand and maybe don't quite trust yet but a beast that I do know.

What would January look like if I took care of myself and my beast? So when the urge to hermit came over me, I didn't fight it. I didn't push myself into being with others. Ignoring the old adage to surround myself with social activities to keep afloat, I have instead made sure I have books and yarn. I do enough social stuff after all with the beasties and their many activities. I didn't beat myself up for not wanting to be with people. Even people I liked. When the restless energy comes over me, I do yoga poses, or I walk around the house. I clean until the energy is spent, and then I sit and read or knit. I am gentle with myself. When the guilt comes as it always does, I try to shrug it off, reminding myself that my neurology is what is. Neither good nor bad. Just there. When I feel the impossibility of doing anything, I remind myself that I will make up for these days soon. I am never always without energy, motivation. Perhaps I must let those seeds sit deep in the earth before the push up with their green sproutings.

And I realized the other day as we tumbled in from a family expedition that I was breathless with laughter. I can be happy. Or perhaps I can feel happiness even in the midst of my beast. A beast that doesn't really walk beside me but inside me. Part of me. There even when the sun chases away the unbidden sadness of depression. I am not sure what will come of this new acceptance. I don't know if it will work say next week. Perhaps I will have to try other methods to care for myself. It doesn't matter. I will do those things but I will do them with a language that doesn't embrace eradication or destruction. Perhaps if I can move away from seeing myself as crazy or mentally ill, I can begin to write a different tale about a woman and her beast.