Sunday, December 28, 2014

Strike A Pose

When we've been out all day, we always stop at the bottom of the drive way to check the mail. Our house rests on a slight incline and while it no doubt would be great exercise to walk to do this task sometimes a long day begs a forbearance. One day, last year, Piper threw the mail on the passenger seat and ran up the hill to grab her one of her many cats. I zipped up, parked and turned to look at what we had gotten. Most of it was junk, and on any other day the Back to School flyer from Target would have qualified as junk as well. But that day as I looked through it, I found myself blinking back tears. Nestled in the middle was a surprise. A young woman, not a baby, a tween with Down syndrome was modeling a back to school outfit. She looked, as did her peers posed around her, stylish and cool. She was smiling, and yes she was beautiful. No, not merely because she had Down syndrome but really in a societal acceptable way beautiful. Shining brown hair, sparkling eyes, perfect skin, slender. Check and check. I was surprised to feel to the tears pushing against the back of my own eyes because I as those of you know me, I am hardly a fan of a the capitalistic, consumer culture in which we live. But there was something undeniably powerful about seeing someone who had the same genetic disposition as Jude on those pages. 

My relationship with advertising is conflicted. I do not pretend that I don't own things for example, and like many people I am often swayed by glossy ads. I own an Ipad and an Iphone for example. My list of sins in terms of consumerism are great and I won't bore you all with my confession but react assure I own things that sometimes make me feel guilty. Suffice to say I don't always buy organic and the underneath of our Christmas tree is not loaded with locally crafted things. But I am aware of how capitalism kills, and the destruction is wrought on all living things including our planet. For every wise choice I've made to askew the system, I've made another that buys right into it. I suspect for most leftist this the reality of our life. We are against a system in which we are embedded. Getting out is hard. Being aware is not.

When Jude was born, I became aware of a struggle within the Down syndrome community concerning the problems surrounding the sharing of images. Like many, I found it frustrating that I couldn't get many of my friends to "share" a news article about Ethan Saylor's death but could easily get them to circulate a picture of an adorable baby with Down syndrome. Even my small readership improved with a picture of Jude thrown into the text. Our society is often regrettably attracted to images; lovely people, cute children, puppies and kittens. And of course we are more attracted to images that fit what we consider beautiful which often means white, blonde, thin, glossy. I too found myself frustrated that not only were the limits of many activism dead ended with lots of photos but that those photos showed a rather untrue picture of Down syndrome (most babies being born with Ds are being born into Hispanic families yet we are still seeing mostly images of blonde, white children).  
And this is where my mind began to shift a bit when it came to putting up pictures of Jude. My daughter is not just a toddler with Down syndrome. She is a female, Latina child with Down syndrome. For some time, I have felt it important that her face is out there even as I feel uncomfortable with advertising and the limitations of advertising.  The reality is that all civil rights movement include branches that fought for control of image as well as political gain. There is no denying the problematic representations of both African Americans and Latino/as in the media both in the past and now. These battles over representation continue because image does matter. When a group is denied their face in the most powerful forces of our world, and make no mistake the media is a powerful force, they are not represented as fully as those who are seen. This is hammered home in areas in other than race as well. Look at the push for "real woman" in advertising. There is something stirring in seeing your face, your body, your skin on the screen or in a picture. I know, as a fat woman, in a thin centered society, it moves me to seeing performers, models, and actors who are fat. In them, I can see glimpses of myself, and wonder for a moment if I am more valuable than I was lead to believe. 

When I first decided to put up Jude's picture with the hashtag #Imready, I knew there would be whispers that I would not necessarily hear. And I have seen glimmers of dissent that as yet have no reared their head on my radar. I suspect many think I sold out, or even worst that I was selling my daughter. I did one photo and hashtagged Carter's as Jude was wearing an outfit from the store which is a favorite of ours. I wasn't going to do it. I though long and hard, and talked with H. In the end, after seeing many pictures of children who were white, we decided to add Jude's face. I struggled as her picture was shared by both friends and strangers. But in the end, as more and more pictures came rolling in, I started to feel more comfortable in our choice. The children, and ultimately tweens and teens, in the photos that started to penetrate my feed were of all colors and abilities. They were beautiful in their diversity. They were the faces that challenged the public to rethink what it meant ot have a perfect child; a beautiful child. Just like when I saw the first Lane Bryant models strut across a cat walk, I started to shift what I saw as beautiful.

Along time ago, when pregnant with Piper, a coworker asked me "Aren't you scared?" "Of what?" I asked her. "Oh you know," she said, uncomfortable, "You already have two beautiful children, aren't you worried that the next one might be," she paused, "Not beautiful?" We left it unspoken about what it meant to be unbeautiful but deep down we both new. We both were thinking, due to my age, of someone like Jude. Then I felt that deep trickling of fear. A fear that ran deep, dank and dark when I found out Jude had Down syndrome. I remembered that conversation when I was crying about my unborn child two years ago. I wish I could back to that moment, and say "All people are lovely." Because you know we are. But even more so people with disabilities are like us all. Most will not be models or possess the look that is required to be a model. However there are a few who do. Who shine with their perfect skin and clear eyes. I, myself will never look like a model. Nor have I ever possessed that kind of beauty. Yet in my own way I am lovely too. Jude, if you'll excuse my mother's bias is indeed lovely. She is as lovely as any of my other children. I am not sure how it happened but I was gifted with very beautiful children. One just happens to have an extra chromosome. No biggie. I doubt though that even with her beauty Carter will come calling. But I do hope that with every time her picture is viewed that someone will remember that beautiful has the ability to be reshaped, redefined, challenged. 

I end with an assurance that I have not lost sight of the political motivations that push me to fight for Jude and for others with disabilities. Representation in the media is important but it is not the end all of a push for equality. Losing sight of that goal would be a betrayal of all that I hold true. But I am not going to pretend that part of our push is about making people with disabilities more visible and more present. Pretending that being pretty isn't part of that push would be disingenuous. I would suggest that the push to represent all humanity in it's glorious unairbrushed beauty is much much bigger than the disability movement. To suggest that we shouldn't bank on appearance while ignoring how often we do just that in other areas is indeed problematic. 

Tuesday, December 16, 2014

Two Years and Rising

When Jude was born two years ago, I couldn't imagine NOT thinking about Down syndrome. From the moment the Dr. uttered over the phone "The fetus has Trisomy 21" my whole world seemed to stop and switch rotation. In those early months, it was always Down syndrome (don't believe me? Go look at those early posts). Don't get me wrong, I don't think it was a bad thing at all. I learned a great deal in those early days about disability rights, and I wouldn't give away that experience for anything.

I kept insisting that our world hadn't changed that much but the reality is that of course our world had changed. We were not the same people we had been even a year before. I never considered myself Abliest but I was in so many ways. The growth and the pain of that growth was hard but so important. How I saw the world went through a radical shift, and I became a better advocate for my children because the reality was simply that I already two children with a disability. I had just never acknowledged it, or rather I had acknowledged/accepted them for who they were but hadn't push that thought process to embrace a bigger arc of people. Jude's birth propelled me into that world, and for that I will be ever thankful. I've meet some amazing advocates, and count myself lucky to be an ally.

But still in the day to day aspect of our life, the change was smaller. The change was simply the way a family dynamic shifts with each new addition. Jude's integration into our family was not always smooth but it was mostly joyous. Now she is just another beastie which is quite something. I don't think any of us even think twice about the Down syndrome. It's not that we don't think about her having Down syndrome. We do. We know. It's just not a big deal anymore, or more it's just common place. She just is. She's here. She's loved. She's a part of the tapestry so smartly woven into the fabric that you'd have to flip things around to find where her thread started. Only then could you see the bumps, the missteps we made, the things we learned, the ways we changed. But from the outside, it's just this toddler. No longer a baby.

In the last year, Jude transformed from our sweet baby to a clever, mischievous sweet toddler. She's a whirlwind of energy that touches everything and everyone in the house. She is fierce and independent as she learns to do things on her own. She scorns our help, and figures out how to do things her way. She has become cautious about her smile, and doesn't offer it with the same abandon she did last year. Her smile is now a gift not to be won but to handed over at her will. But she is not afraid of the world around her. She walks as if she owns a room, shunning those who would block her or restrict her purpose. She is a queen, and it's clear in the way she holds her head.

For me these days of getting to know Jude do negate the kind of thinking about Down syndrome that soaked through the days when she was younger. Now it is simply an aspect of her. I no longer fear the future the way I used to when she a baby in my arms. Or rather I fear for her future the way I do with all my children. There is no hidden corners of wondering if she will not talk, not run, not be independent. Instead, I am leaning into the days of shaping as she grows into ever more being. The future is murky as those magic 8 balls from my childhood would tell me. No surprise there.

This everyday texture to thinking about Down syndrome--to living with Jude who has Down syndrome--has changed they way I write as well. I am not sure what I have to offer. I suspect my greatest use is to offer up the voices of those with disabilities. I am not a good blog writer, I suspect. I don't research enough nor do I have that knack for pulling information together in an interesting way. There are others who are much better than I at this kind of writing. And sometimes, I worry that I will tell too much of Jude's story. That in the end, I will have paved too much of her road. Perhaps, I think, it is best to let that murky future hidden in the inky depths of a Magic 8 ball reveal itself to who it will. 

Wednesday, December 03, 2014

What Completion Feels Like

Sunday was frantic. I had been out for most of the day Saturday, picking up books for the kids' Yule gifts as well as hitting up the yarn store. I try to make sure I hit our local businesses for Small Business Saturday so they can feel the love. But in the back of my mind, a little voice was screaming 'GO HOME WOMAN AND WRITE. I only wrote about a thousand words Saturday sneaking onto the computer in the little in between moments. We went out that night, and I tried to relax. Tried to look at books. Tried to knit but that voice wouldn't shut up. I paced a lot, recording in my mind my final scene. And I did go home to type until exhaustion drove me to bed. Thus Sunday after our weekly brunch (and for a bit before) I started. I wrote for ten fucking hours. When I wrote my last sentence: "I don't know if was him peeking through that veil or the painkillers but it felt like a benediction." I was so tired that I didn't even feel celebratory. I just felt like I needed sleep; like I might never want to write again. And then I felt restless, as if there should be more feeling. After all I had just finished my first novel. I wrote almost 97, 000 words in a month. I had "won" National Novel Writing Month by the 15th but I won my own goal on the 30th around 11:00 at night.

I'm not good for the long haul in most things. There were times honestly when I worried about being married, about being a mother because of this thing that I saw as a distinct character flaw. My teachers used to say I lacked "follow through." Indeed, I admit it honestly, it's always been hard for me to sustain interest in one thing for too long. I did two majors in college and a minor for which I suspect I had enough credits to be a major if they had offered one in Women's Studies. I managed to finish my MA but I'm convinced that was because my adviser made me do it. Last year when I decided to do NaNoWriMo, I knew there as no way I could do a novel so I did short stories and played around with the idea that I ended up taking up again this year. It was all part of my need for short projects. Even my knitting reflects this: hats, mitts, baby things. I've been whining about the sweater I've been knitting for Rowena whose is four and not big for months: "It's never going to end...."

I realized years ago that I place a lot of worth on the moment of finishing. When I lost a a shit ton of weight after being pregnant with Piper, I remember hitting my goal weight, and feeling really let down. I don't know what I expected to happen. Balloons and confetti I guess. This was the same thing that happened when I finished my MA. All this time spent towards the completion of a goal lead towards one moment that didn't live up to the imaginings I created of that moment. I always felt like a kid after opening up your Christmas presents. All that hype for maybe fifteen minutes of excitement.

When I decided to write this novel for November, I remembered both my past failures at going for the long haul, and the fact there's not always "satisfaction in a job well done." People always forget to tell you that sometimes there's a  depressing dip when things are completed as well. But I was determined to prove to myself that I could write a novel. After all I had dreamed of doing this for my most of my life. I needed to know that I could sustain a story for more than few pages. I told myself as I started that it didn't have to be good; it just had to get done.

As I wrote, I roller coasted through a variety of emotions. Days when I was in the valley looking up and knowing that the exhilarating climb was coming followed by days when the descent was wildly coming up to crash in my face. I wrote through self doubt, and frankly hate: hate for my story, hate for my talent. I pushed through my own snobbery at what counted as "good" writing including engaging in numerous debates with H (he arguing against the snobbery). I had to examine my own sense of weird self-worth: you should be writing the "good" stuff and you suck as a writer no one is going to read your bad stuff. I wrestled with the guilt that told me I should be using my writing time to blog about: racism, sexism, disability. While I wrote, I participated in a community of wonderful writers who gave menplot pointers, helped me through tangles, and shared in the delicious chaos that is NaNoWriMo.

When it was over, and I sat reading my last sentence, I realized that old feeling was coming. "You did it," this voice hissed, "and now what? Who cares? What a let down!" H decided we should do a celebratory ride through town to look at the Christmas lights, and as we drove, I struggled with the let down. I held onto the planning for the second novel. I thought about all the things I could do again: knit and read (okay and clean). But it didn't help. I sank into a kind of sadness. I bought a bag of candy and over indulged something I haven't done for a couple of months now. Luckily the nature of this season saved me from myself, and I was soon caught up in the business of things to do.

This morning as I was taking my shower, I thought about the two paragraphs to this post that I had written the night before. I had a total revelation as often happens to me when I'm showering (I'm convinced it's because there is no way to I can write anything down). The whole point isn't the end. It's the process. It's why little Ms. No Follow Through has been married for almost 15 years, and has five kids she hasn't abandoned. You see being in this family, my family, has always been about the process. There's no end to parenting or being a partner to someone. Things change, and evolve requiring multiple ways of addressing, being, and becoming. None of us are the same as we march through time, and being a parent to five very distinctive individuals has hammered this fact home. But I had never though to apply this philosophy to things like writing, or studying or reading.  When I really thought about the month, it wasn't about that one moment although it was a good feeling to meet my goals, rather it was the compilation of all those days, the doubts, the perfect sentences, falling in love with a character, having characters transform or insert themselves into your story no matter how hard you try to kick them out. It was the sprints with new friends at coffee shops, messages back and forth with problems, that one guy who saved my romance story.

When I thought back over my life, and the disappointment about completion, I realized that I had forgotten about the process. My MA did not just appear (sometimes I wish that was so). No, I wrote and anguished. I talked and learned. I made a good friend in my adviser. I had wonderful classes. I had wonderful conversations with H over theory. I meet some fascinating people. When I lost the weight, I learned a lot about myself and how I used food as a drug. I learned how to think about food in new ways, ways that actually enhanced my enjoyment of eating. And so it was with my novel. And so it is with all my writing. I am proud of my little book. Proud of what I accomplished. But what I will remember is the ride.

Tuesday, November 25, 2014

Someone's Son, My Son

A few weeks ago, my son attended a Zombie prom at the local library. He's a homeschooled kid so he looks forward to these events to make friends, reunite with already made friends, and now that he's older, to flirt with girls. When I picked him up that night, he was waiting for me inside a foyer sitting beside a pretty blond girl. You know the type: cheerleader, what people love to call "all American" because we all know America is white and blond. As I got closer, I realized they were flirting, both enjoying the attention of the other. I caught his eye and stood back to give him some privacy. But as I watched them, this white girl and my brown son, I thought "I wonder what her parents would think?" Because sadly in this world this is what I have to worry about. The perception people have about my son, and the fear that we live in a place where too often "biracial" anything is looked upon with fear and prejudice. I've noted that in our society we have a lot of cultural undercurrents about black and brown men, and with Hispanic men it's a fear that they'll rape, seduce, white women. I've read the fears too many times in the way white women talk about how Latino men area always "checking them out" or the way stories about rapists who "might" be Hispanic are written. And my son is a Latino male, and every day I am painfully reminded of the stereotypes that not just signify him but place in positions that could be dangerous.

When I first moved to the South from Maine, it was a life changing experience in many ways. You see, I didn't see myself as racist. I was married to a man of color, and I had a son of color. I was educated. I had taken the "right" classes, and I thought of myself as a liberal, open minded person who wasn't racist. And then I was in a place where white people were not the majority, a place that was frankly shaped by the blood of slaves. A place where people still dropped the "N" word as casually as saying "Good morning." For a time I allowed myself to feel superior. It was easy to do. Easier than examining my own hidden racism, a racism so insidious that it shaped my world view without me even knowing.

Then I went to teach at an inner city high school for kids who were considered high risk. I had a lot of pretty naive expectations about what kind of teacher I was going to be when I walked in that Monday morning. And those were pretty much shattered with my first class which was filled with some of the toughest, meanest, jaded tenth graders I've ever meet. But the real lesson was all about that insidious racism that laid coiled inside me. I went home everyday and cried to Horacio about how hard it was. About how I wanted to reach them. But what I didn't tell him at first was how much those kids scared me.  I had a whole list of reasons about why they scared me and they all looked good. If I listed them out right now I have no doubt that many of my readers would be "Hell yeah that's scary." But really it was because they were black, and they were not the kind of black people I had come to know. They were the kind of black people that society told me I needed to fear.

One day as I photocopying some papers, an older teacher close to retirement came and started talking to me. I expressed frustration about what was happening in my classroom, and he said "All of our students are bottom feeders." That hit me hard. I was sickened, and disgusted. I went to my class, and I looked at those faces which were drawn, leery, and...scared. Why wouldn't they feel this way? Why wouldn't they hide their fear behind aggression? After all they had likely encountered teachers who felt the same way as the teacher who just spoken to me. When I went home that night, I confessed to Horacio my fear, and he gracisously walked this pathic white girl through her own racism. It was a painful and horrible moment for me. Even more painful then when I been called out by my African-American women's literature professor over some pretty blatantly racist shit that came out of my mouth. I had thought it was gone, weeded from me, only to discover it cropping up when I least expected it.

That moment changed my relationship with my students, and while it was never easy in that classroom things started to shift as if they could sense that I was no longer afraid of them. Slowly over time a few of them even began to trust me. I had students who had punched teachers in the face become my greatest allies and even my friends. When a young male black student threatened me with violence one afternoon, I had to make yet another examination and look at my fear in the face and tease it away from the racism. I remembered talking in a religious studies class about how our culture has worked hard to ensure that white woman fear black men, and how often that is really misplaced. It allowed me to make a choice to diffuse the situation as opposed to feeding into the fear I felt, and fear that he no doubt felt for many reasons. After all I as a white teacher had a great deal more power than he did as a black student. Being aware of how I had been indoctrinated to fear had often masked the power I actually held in my hands, and power held unaware is even more dangerous.

When I read through Darren Wilson's testimony, I couldn't help but be reminded of what I had rooted out. His testimony reads like a textbook example of what happens when you condition a culture to feel fear for a certain kind of person.

"And when I grabbed him, the only way I can describe it is I felt like  a five-year-old onto Hulk Hogan."

"I felt that another one of those punches in my face could knock me out or worse. I mean it was, he's obviously bigger than I was, and stronger and the, I've already taken two to the face and I didn't think I would, the third one could be fatal if he hit me right."

"He looked up at me and the most aggressive face. The only way I can describe it, it looks like a demon, that's how angry he looked."

I'm not going to speculate about if there is truth in his assertion that he was really scared. It's a familiar enough story at this point that we know he could use it to convince a Grand Jury to let him go free and clear. George Zimmerman used the same words to justify his murder of Trayvon Martin. The myth of the scary black man is a dangerous myth. Not dangerous for white people let me be very clear but dangerous for black men. When those who have the power use powerlessness as a weapon to justify their take down of people who are systemically oppressed it's pretty hard to have a justice system that if fair. It's what I had to learn as a teacher, and I didn't get to carry a gun. The fact that  his myth is perpetuated in police forces all over the country without question scares the shit of me. It scares me because while I am white, my husband and son are not. They are the mercy all too often of those who deny their power and privilege. I am scared because as a white woman I am far more likely to be raped by a white man, and if I reported that rape, it's likely that white man would walk.

The other day I walked into our local grocery store. And as I walked through the store, I realized that who I feared were not the young men of color who were in the store. But the frat boys with their loud shouts, their way of holding their bodies as if they owned all the space around them. I found myself repulsed by their casual mocking of the women who walked by them, or their blatant check outs of the women they thought attractive. When the Latino father walked by me and smiled at Jude, I didn't wonder how many women he might have raped. No that thought was saved for the loud frat boy in the beer aisle.

Thursday, October 30, 2014

Love Letter To Canopy

When we first come in, Jude is sleeping in my arms. She has had a long day of therapies, and she's beat. R dances in as she always does, her shoes coming off with a quick swipe as she rushes to the floor. She loves her teacher, and eagerly gets on the mat for a quick warm up before the extra fun begins. Myself? Well I love the studio as well. It pleases my aesthetic eye. The way the fabrics in the back drape down from the ceiling to the floor, or the cross of ropes sweeping beneath the black steel beams on the ceiling. More importantly I feel safe in this place, or perhaps I should say I feel like my children are safe in this place. This is an important thing when you are the mother of "biracial" children most who have a disability. In this place, my girls soar and fly and not just because they are dancing on trapeze bars. They are accepted for who they are in this space.

Jude wakes up the moment the bars are lowed from ceiling to floor. She yells out happily as R's teacher begins to help R through a series of moves. R is a bit timid on the ropes, and her teacher knows just the right amount of pressure to use to push R out of her comfort zone but never too far. It's amazing watching R going from tearfully afraid to smiling with pleasure at an accomplishment. Jude claps for her every time, a big smile on her face, usually laughing. No longer content to be in my arms, she squirms down, and thus begins our dance. She keeps moving towards the mats, and I keep sweeping her away. 

Towards the end of the class, one of our favorite people, Ann, comes to work. She sees Jude walking and she is immediately setting her things down, and squatting to get Jude to come to her. She's been waiting for Jude to walk for a while now. Jude has been an added passenger to trapeze classes since she was an infant. We have sat through many sessions watching the big girls learn to fly. And along the way she's acquired a few admirers. Ann picks up Jude, and brings her over to an empty bar. Jude's face is marked with incredulity. Finally she's allowed onto the forbidden mats. Ann sits down with Jude facing out, and pushes them into a gentle swing. She gently places Jude's hands on the rope, and Jude? Jude is smiling, her face is glowing as she too begins her first lesson in what it is like to fly.

When I think about leaving Athens, I am sad in ways that I didn't imagine I'd feel even last year. While I love our new adventures, and know that we're a tight enough family unit to be happy almost anywhere, I love this town. And I love Canopy. I know it sounds a bit silly to be sad to leave one studio but this place has come to mean so much to us. The respect shown to Camille, the careful patience in working with her not against her, and then the joy when Jude takes her first step (this means she can now do the toddler's classes) has made this place much more than just a place to take lessons. It has made it a place with people we can call friends. A place where I can entrust my children. 

Last Sunday, the big girls and I  finally got to see a show done by the repertoire company. I am not sure if I can begin to describe the beauty. A beauty combined of grace and strength. A beauty made stronger for the fact that everyone was so different and perfect in their difference. This was not a dance with bodies that all looked alike but a dance with bodies of many sizes and shapes. As the women (and one man) , twisted their bodies into what seemed like impossible positions, I teared up a little at the wonder of it all. I was taken back to when I was a child and magic was so very real, just outside of my small grasp. Vampires and monsters abound but they danced and seduced us into feeling safe inside a studio magically metaphorized into a dark forest. And the look on my girls' faces was even more magical. They were carried away not just with the power of the show but with the power that someday they would be the ones dancing with fire, dancing with others high above the ground. 

Friday, October 17, 2014

Taking Happiness Seriously

When I was about nineteen, fresh from a conservative Christian high school, I began to slowly transform the way I looked to match the way I felt. For three years, I had tried Jesus as a fix to a deep abyss that sat heavily in my stomach.  After reading, Frank Peretti, I even entertained the idea that maybe I was oppressed with demons. Real demons. Not metaphorical demons of depression. When I left school, I also left my faith on the stage, and walked out into a world no longer enchanted. Over a period of months, my clothes got darker, my hair shorter, and I added some holes to various parts of my body. Sure it was an act but it was also a telling moment where I began to accept that the feeling inside. I can mark this as the beginning of a time when I went beyond naming my depression and turn into an intricate part of my identity.

Of course depression was not just a fashion accessory for me. Depression was something that I had experienced for many years but not something I really understood. I didn't see a psychologist until I was 22 but I first remember being depressed around twelve. There was this feeling inside me that told me I'd never be happy. Days when I could barely get myself out of bed. Days when I wished I'd just never wake up. Days so filled with pain and sadness that I couldn't even cry. But I didn't really have an understanding even if I had the word. The understanding would come much later when I was older.

At the point, I started to retell my story depression became the fuel for my creativity. It was not difficult to reach this conclusion in the artist biographies I read, and in the people with whom I had friends in my early twenties. Among this group, depression was romanticized and idealized. Instead of being the thing that kept me bed for hours upon hours, that made it difficult to even shower, depression was made me special. For a young woman longing to feel special this was heady stuff.  I refused treatment. My rejection of antidepressants became a badge of honor. I accepted my suffering, wore it proudly, marched about as if I was a martyr.

And I also began to see happy as a shallow emotion something upon which to look with disdain. It was easy to re script my past by carefully editing out all the happy moments. My childhood was a gray sea of sadness in this new story. I struggled with the moments I was happy, and self-sabotaged any joy I felt. I ruined relationships, destroyed happy scenes, and stomped out any laughter that wasn't underlined with a bit of sarcasm and cynicism. In the end, I didn't really understand my depression anymore than I understood how I could be happy when the world was burning around me.

Over the years, I've softened my attitude about antidepressants. I no longer see meds as an easy way out, and I've even put myself on them. Depression doesn't do much for creativity when you can barely get out of bed. I reshaped my ideas about depression and along the way discovered that antidepressants, therapy, all the tools out there, were not escapes that erased my personality. But with this important shift, I still was disdainful of happy.  Happy people were shallow, simple, and lacking in creativity. The pursuit of happiness in a world that was screwed up was selfish. And this made embracing the joy in my life incredibly difficult. I knew that I was holding back but I came up with a lot reasons for why I was holding myself back: fear being the biggest excuse. I suppose it was fear. Fear that being happy, enjoying happiness would somehow make me less complicated, less interesting. I remember experiencing moments when I was so happy I felt that the lightness would carry me away, and I would stuff that feeling deep down away from the light. I got to a point where I couldn't imagine how I could experience happiness with depression.

Thus you can imagine my horror when I told people that Jude had Down syndrome and the first thing so many people said to me was "Oh everyone I've meet with Down syndrome is just sooo happy." And what ran through my mind was that old playground taunt "Happy and dumb." I thought about how many ways we have of saying this very thing: "I was happier not knowing." Ignorance is bliss." Christianity's very origin story revolves around the idea of ignorance being paradise.  For someone who spent a great chunk of her life looking down on happiness as a personality trait, I was horrified even as I knew it was a stereotype. Obviously no one is always happy, and it's absurd to paint an entire population of people with any one characteristic. Of course I knew this. But what I didn't even pause to question was my attitude towards happiness.

A few weeks ago, I took a photo of Jude crawling towards me with a huge smile on her face. Her hair is up in pigtails; her eyes are shining. The whole picture screams "Happy." As I added the picture to a group on Facebook, I wrote a small justification about how Jude wasn't always happy, and I ended with how I almost didn't want to put the picture up because I knew people were going to harp on how happy people with Ds are.This has happened often over the last two years. I find myself seeking photos of Jude's rare moment of having a fit. I joked to H that I wish I could snap a shot of Jude having a fit in the middle of the night because I'm not latching her on fast enough. The thing is that Jude is happy most of the time. She loves life with a joy that is intense in and of itself. She is almost always smiling with her eyes bright as she explores the world. Whenever we go out people comment on it "What a happy baby!" "She's loving that lollipop?" "What a smile!" "I wish I enjoyed life like that!" And while sometimes I feel like I have to argue because not all people with Ds are happy, I do have to also acknowledge that Jude is pretty damn happy (and no not all babies are happy. I've had four besides Jude and only one was a happy baby).

No Jude is not always happy. Just like I am not always depressed or moody or gloomy. She is like me a multifaceted person. She's not happy when R is stealing a toy from her. She's not happy when we don't let her dump the hamper. She doesn't enjoy all things. She's not overly fond of our cats. She's a little eh about her physical therapy. She despises her car seat. She's shy as well, and like most toddlers hides behind my legs when she first meets grown ups. She has days where's a little cranky but overall Jude is very content. She likes to play. She likes going to the library and to the park. She adores dogs. She has a huge smile on her face most of the time. She lives life with a breathtaking kind of intensity that has made me question my own ideas about intensity.

And that's where I am this evening as I finally type out this jumble that has been rolling around in my head. I don't want my child to be limited by a stereotype. But I also don't want her to be limited by an unquestioning definition of happy either. Our society has a complicated relationship with happy. There is a drive to be happy. The Declaration of Independence tells us we should pursue it. There are  a million and one zenish quotes that tell us how to achieve it and why we should. But yet there is all the cultural baggage I mentioned earlier that tells us that happiness is simple, uncomplicated, not really smart, not really creative. One hand we long to be simple and on the other hand we look askance on simple. Is happiness even connected to "simple?" What does it mean to pursue happiness? Does feeling happiness really prevent one from seeing the ills of the world? Is it really selfish to be happy? I have no answers to these questions. I am not even sure if I could give a decent definition of happiness. What I do know is that in order to fully appreciate Jude I am going to have explore these questions, seriously. Jude  and other people with Down syndrome do not deserve to be corralled into one emotion. The absurdity, and danger, of labeling a group of people with any one thing is something we must speak out against. But an equally important objective for me, as a parent, as a guide, is to fully explore along with my child, the dimensions and richness of her personality including the part that is happy.

Wednesday, September 03, 2014

Always Another Turn

We began our homeschooling path as unschoolers. Radical unschoolers. But as with most things I start with great passion time tempered my initial feelings and we moved into spaces that were not so easily labeled. We've never been schooly. There were never lesson plan books or school at home desks. There were suggestions and plans along with math curriculum. On a sunny crisp fall day schoolwork was eschewed for long walks through the woods or sometimes a surprise trip downtown to whatever city we were living in at the time. Things on a list can always get always get done is what I learned, and if they don't, the world is not going to come crashing down. This might seem obvious to you but for me it was a lesson.

I am a woman who lives on lists. I used to think I was "scatterbrained" but I now suspect I might have a different brain that just functions divergently. But lists...well lists kept me focused. I wouldn't have finished my degrees (and both of those took an incredibly long time to complete) if it weren't for the lists I made up every morning along with my coffee. These lists littered my life, to do marked clearly on top with lines through what had been done although sometimes I forgot to do the lines.

To Do:
clean up kitchen
feed cats
write journal for Alice
go to class
library for research and books
takes notes for Jennifer's paper

H and I did our Masters with three small children. They were five and under when we began. We also started our homeschooling road at the same time. Our house was a happy chaos in those days. Papers everywhere. Books piled high on end tables. Our kids were more comfortable on college campuses then they were in classrooms. We read picture books in between our daily does of Foucault and Butler. Camille learned to untie shoes by hiding under the table in a conference room as my favorite professor and adviser lectured on theories of religion. They articulated complex thoughts about God and nature because they overheard H and I talking about these things. I still look back over those times with a fond eye...and oh the lists. They were there, coming and going as I moved through the complexities of thesis writing and through doubt about unschooling. They had become computer files at this point, and they still haunt me as I go to open documents.

When we moved to Athens, things shifted every so slightly in that I became a full time stay at home mom instead of a part time one. I spent a couple of years in a fog trying to figure out what this meant. My too do lists mocked me as I tried to organize my day around things that brought me little joy. Washing dishes does not answer the meaning of life. I focused my meaning on the children's schooling, and my to do list for them became complex diagrams that looked an awful lot like the pages of a lesson plan book. And then I had Jude, and when I decided to homeschool her, I told myself "Now you're going to have get it with it missy." I didn't think I could unschool Jude. The old fears that I'd ruin her crept in as I held her tiny body close to mine while I worried away at those future stones.

A couple of weeks ago, I went out to dinner with some of H's friends, and they started to ask me why we homeschooled, and as I tried to articulate why, I realized with a jolt how far I had drifted from those idyllic days from the past. I told H's friends that we hate how the system shapes children and that we wanted to shape our children with a different kind of ideology. I told them how confident our children had become, how sure of themselves. That what people had kept calling sheltering was actually a safe place to become who they were so that when they left our arms, they were proud of who they were instead of ashamed or beaten down. And as I talked I remembered Camille's only year of school and how shattered she had become and the years it took to heal those wounds left by a few awful people. As I talked I also thought about the books that were cluttering up my shelves, the binders, the lesson plans that were taking over the creamy smooth pages of my Moleskin journals. But the kids need this, I thought to myself confidently. I am just doing what they want.

We started "school" on Monday. I got up reasonably early (for me). I had a to do list for each child. Oh how the list had evolved. Things went smoothly until Camille woke up. I handed her the list and she looked at me askance. I knew resistance was coming and I steeled myself. Things went relatively well until I asked her to write a journal entry on the book she was reading. At first, she resisted silently. Sitting in the corner of the couch curled up around herself. I gave her space and did some things with R. Every once in awhile I'd remind her that she needed to do a journal entry. The tears came next. I looked over to see her silently crying over the journal and book. I sat with her and tried to talk to her about what to write. Finally frustrated I snapped "Do what ever you want. I give up. You're not going to get into college if you don't write." She quietly gathered her things and went to her room. H shoot me a look.

Maybe you should back off. he said quietly.

I sulked. And then thought back to how Umberto didn't really do anything until last year and really didn't blossom until this summer. I thought about my friend's son who was taking college classes at 16 after years of being unschooled. I took a deep breath and then another...Camille wrote for hours everyday. Her fan fiction covered our house in comics and filled screens upon screens on the computer.

Well she does write all the time. I said.

The raging came later as she lashed out against R. H looked over at me and said "We've seen this before."  I went in to talk to her and she was lying on her bed with pages of writing before her and the book. She was trying to make a journal entry. For me. I felt the tears prick on the back of my eyes.

I hate this. she told me.

I rubbed her arm, and said "Then don't do it. Why don't we just talk about it once you're done reading." She nodded and gave me a small hug. I wasn't going to be one of those awful people. Later Camille will remember how light years are described in A Wrinkle in Time. Later we will watch the best of time warp scenes from Star Trek, and laugh over Shatner's hair and debate who was a better captain (Picard of course). And I will sit surrounded by these beings and remember why we began this journey in the first place.

Around this new turn, I find myself staring face to face with the past. We are taking a risk raising our children this way. A leap of faith was what I called way back when Umberto was five. And we have encountered doubts that blocked our way. Umberto wasn't reading at nine and voices were telling us to quick put him in school before we ruined him. There was something wrong. And there was a block but school didn't loosen it up. Epilepsy medicine did the job. A couple of years ago it seemed like all Umberto did was play Xbox, and I was worried. This summer he had to get a second summer reading program list as he had read too many books to list on his first sheet. I am not sure what the future holds for us, and I am sure that in many ways my children will see what we have done as a failure. But I also hope that they will be able to pause and say "Wow my life was pretty interesting and it showed me other ways of seeing the world."

I end this with remembering that time does not march straight ahead. As I rounded that sharp curve on Monday, I came face to face with a wounded six year old who hid from us for a long time. And I was able to hold that child now grown and turn around to see another image. Where we will go this year, I do not know but I do know that what I have created was a way to make meaning for myself. We have to sit down again and find ways that will sustain us all.

Wednesday, August 20, 2014

The Power of Being Wanted

Every night I do something with Jude that I don't do with any of my other children. Every night as Jude falls into sleep, her beautiful lashes brushing her plumb cheeks, her sweet lips puckered out, I whisper into her tiny shell of an ear "You were wanted. Never ever forget that we wanted you." I have done from the first time she feel asleep in my arms until this very day.

Looking back perhaps I should have been whispering to my children these very words. This hit home when I looked at the children being crammed into too small holding rooms. Children who were fleeing the violence in their countries, alone at tender ages. These children sometimes looked like my children. And at that point I began to think about what it means to be unwanted.

This was on my mind as I read as the first flurry of news items about Baby Gammy began to come across my screen.  While the information surrounding Baby Gammy is filled with contradictions and the usual he said, she said, it is undeniable that Gammy's biological parents saw little use in the twin with Down syndrome. So they left him and took the sister who did not have Down syndrome. The pain of this action cut me deeply as the mother of a little girl with Down syndrome. At first, I focused on the issue of surrogacy as a business in developing countries, a kind of repulsive medical tourism laid out on women's bodies. And this is an important issue, and perhaps one of the main issues that ought to be focused on as this conversation continues. But as the days pushed forth, and more news came out, including the horrid interview with the biological father, I couldn't turn away from those words I whisper to my daughter--I want you-- and reflect on why I must say them to her and why I say them to my older children in different ways. Why I must push away with the softest hope of promise what the world seems to be telling me about  my child with Ds; about my Latino/a children. 

And then a cop shot Micheal Brown and the world exploded.

From across the Continent two stories collied on my horizon; and in a dream the collision of these very different things lit up the sky. I woke up with the words "I want you..." on my lips. You see, Michael Brown was wanted by his mother, and he meet death at the hands of someone who very likely didn't want him around--who saw him as a nuisance who needed to be erased. Today I read the comments in a vigil I partook in about how Brown was a bully and a thug and was likely very (un)missed by those he bullied. I have read about how he was someone who would have come to this end in the long run. "I want you..." I hear in the sobs of his mother, of her stories about her son's plans for the future. And I watch how the news tries to use those plans as a way to make a case for murder. But it's murder even if he was all those awful things people say, right? Proving worth...but only some of us have to prove worth. And that is where "I want you..." comes to be a statement that reveals bias.

I am aware everyday that most people wouldn't wish for a child like mine. When people find out that they are not carrying a fetus with Down syndrome they say things like "It's okay!" "We're safe!" And people tell you "I don't care about gender as long as it's healthy." I have had to leave parenting groups filled with very nice people because they describe getting a high risk on a blood test as a "Scare." Sometimes in my darkest moments, I wonder if all the people who love Jude would even want a child like Jude. I hear it sometimes when people say things like "You're so brave." and "I don't know if I could do it." What I hear is "I'm glad it's not me." 

Sometimes I even say it when I say "Not everyone could raise a child with Ds" as a way to think about abortion. 

Today it came shattering down around me. I read Dawkins' horrible words about fetuses with Down syndrome. According to Dawkins' it would be immoral to carry a fetus with Down syndrome. After all they don't contribute anything to society (one could make the same argument for Dawkins but I won't sink as low as that scum). And as I nursed my girl to sleep, I sobbed into her hair. Sobbed because it's not the first time I had seen such things said about people with Down syndrome. Sobbed because I know that this is not just one asshat's opinion but the opinion of whole societies. I know this because the abortion rate for fetuses with Down syndrome is painfully high. I know this because when people with Down syndrome are beaten or killed by the police or by people acting like the police, there is so little outrage. Instead it is hinted in hushed tones that perhaps this was the best thing. After all what future did these people have, really?

I have often tried to write about how I reconcile being pro choice with being anti-eugenic and I never get it quite right. I suspect I won't get it right this time but I am going to put this out there. When prenatal testing is marketed as a way to rid people of unwanted birth defects, we have eugenics. Prenatal testing as it is offered now is being offered as eugenic tool. When someone like Dawkins suggests that there is an idea of perfect or that a parent can should screen their fetus in order to choose the most perfect child, we are falling into the world of eugenics. Because the idea of testing as a screen to weed out what is undesirable is dangerously close to an idea of a master race. It is the promotion of a dangerous idea about how some people might know what it means to be a superior person, a superior race. And that should have us frightened.

And this is ultimately what the difference is for me between being pro-choice and anti-eugenic. I am utterly against infringing on a women's right to choice. But if the only choice is to offer a society where her child can be shot down by the police, maligned in the media, not given proper housing, food and education. If it is a world where her child is treated as subhuman, a world where people tell her she was immoral to carry her child, a world where people make memes of her child and mock that child. If it is a world where people casually drop slurs about her child and then defend their words as if they mean nothing..what kind of choice are we really offering? The reality is that we must fight eugenics in the ways companies word their tests, the way that genetic counselors tell parents of their options, the way that Drs. treat our children. We must fight eugenics at the government level by demanding the best education for our children which is clearly to be found in inclusion. By insisting that our children deserve to have saving accounts which can help them survive after their parents are gone and allow them an independent productive life. We must fight for our children to have meaningful and engaging work surrounded by other people. Eugenics does not begin and end with abortion, I am afraid, it extends into the lives of babies who are left behind (thankfully to loving parents), into lives taken too soon because value was not seen, into the words of those with influence. 

Every night until I no longer have the right to do so I will whisper to Jude "I want you. Never think think that I didn't want you..." and I hope that someday she will whisper to herself "I was wanted. My parents wanted me. My siblings wanted me. My friends wanted me. The world wants me." 

Tuesday, August 19, 2014

Another Trip Around The Sun

I woke up this morning with a foot in my face. An adorable foot grant you but a foot nonetheless. It's a pretty typical way to start my day. Over the last few months, I have marveled that not once since Jude was born have I ever imagine my life any differently. While this is not the path that I would have chosen twenty years ago nor the path I had envisioned myself, it is the path that has brought me an incredible amount of joy and peace. I spend every day surrounded in love and that is no small thing.

The last year has been intense emotionally. As Jude moved through her second year, I found my views on disability shifting even more as I struggled with ideas about difference and sameness, about how to fit those ideas into a voice that expressed just how amazing Jude was but how her difference did sometimes make things different. And I also struggled to talk about how having Jude changed me not because Jude has some magical powers granted through her extra chromosome but because the process of accepting Jude as is changed something deep inside me. I learned to look at the world in a new way.

The other children grew and changed as well pushing to me change even more. Being a parent, I think, is about change. All the time. Camille did trapeze and we watched as her newly found confidence shown as she swung through the air, twisting her body and dancing with the help of a bar and a rope. Piper shown in trapeze as well taking to this unusual dance form with a naturalness that was breath taking. Umberto has become such a neat , interesting person, finally emerging from his slight gaming obsession to expand his interest in other areas. I am amazed at these bright creative kids surrounding me, and sometimes even ponder how I had such people come from my body.

And of course there has been pain. There's always a bit of pain. On a personal level, I lost some friends. There were a few big blow outs that have alienated me from many different groups. I almost lost a good friend because of my own jealously. I almost shut down the blog but luckily I was able to find my way back to why I started the blog in the first place. Over the last few months, I've become stronger, more sure about what my writing means to me and while I still struggle with envy, it does not cover all that I do. I am saddened by the friends I lost, and am still not sure if I am okay with being alienated from all the major voices in the Ds community but I am learning to live with my mistakes and to just move on hoping that things will work out. And I have also learned that even when the disaster that happens may be painful that sometimes it was the right thing. I have given apologies to those I feel deserve one but have not done what I usually do and apologized for things that I don't really feel deserve an apology.

There was the emerging from a depression that I had been in slight denial about over the last two years.  Depression that was exasperated by my faulty gall bladder. Being sick for 9 months takes a toll on one's emotional life for sure. It also really played out on my eating disorders and lead to some revelations and also a lot of shame. But the good thing was that I realized that my over eating has much to do with emotional pain around ideas about food, my body, and value. In the end, I got the pesky internal organ removed and am feeling so much better. It's nice to eat without fear, and although I'd admit that I've been in indulging in some "not so healthy" foods, I feel zero shame. I'll get back to my normal eating schedule soon but right now it's nice to eat a fry and not feel like I'm giving birth. The other good part that came from all this was that I realized I really do need therapy and am going to get some next month. I feel like I'm making a very important choice in making my life even more livable.

Basically all this is to say that I feel like while the greyness of depression sucked a lot of my energy from me, it also served to let me rest, mull things over, and emerge with some new ideas and plans. It's funny how this thing is both so soul sucking and also affirming. It's why I think I have a hard time writing about my depression. Anyway, I am looking forward to this new year. I have many plans, books to write, posts to blog, new friends to make, old friendships to develop, and the very important work of nurturing the new relationships I've just started. I have things to knit and books to read. I have coming fall park days with my beasties. More love with H, the best husband a woman could ask for. I am filled with hope, even if it is a tentative hope. The world sometimes seems to be exploding before my eyes, and I feel the pain acutely. But it is the love that I feel that fuels me to go forth and say "No more."

Monday, August 18, 2014

The Difference In a Traffic Stop

When I about a month post-partum from having given birth to Piper, I went out for a brief foray to grade papers at the school where I taught. I was leaving that year, and wanted to make sure I left on a good note. On my way home, frantic with worry over my wee baby who didn't yet take a bottle, I was going a little fast. Okay I was going about ten miles over the speed limit which anyone who lives in Charlotte can verify is no big thing. I was pulled over very close to home. The officer who approached my car did so initially with his hand positioned over his gun. This was not surprising considering I was driving an older model Honda Accord in slightly ritzy neighborhood. Once he saw me though, he took his hand off and sauntered over with a smile on his face. He asked if I knew why I had been pulled over and I said "I know, I know I was driving too fast."

"Why the hurry?" He inquired as I finished gathering all the information he needed including my expired Maine licence.

"I just had a baby," I explained looking back toward the backseat where three car seats sat jammed together. "I had to go to my job and grade some papers and I'm worried about her."

The officer looked over my stuff and I saw his eyebrows raise over the license which had expired last year. "I'll be right back." he said, moving back to his car. I waited sick with worry over not just Piper but over a ticket that I knew we couldn't afford, and over the possibility that I was going to be arrested for driving on an expired license.

When the officer returned after what seemed like a half hour but was more like ten minutes, he handed me my stuff with a smile. "I'm going to let you go with a warning on the speeding. But I am going to write you up for the license so that you'll go get a new one. If you get it done in the next month there won't be a fine. You have to go to the courthouse and show that you got your license updated."

After assuring me that I could drive home, I thanked him profusely and went on my way, thinking that the CMPD were actually pretty decent.

But then my husband got pulled over by the same department. My husband who always obeys the traffic rules. My husband who frankly drives like a little old lady. He was pulled over in a "rough" neighborhood on his way to school/work. There were cars passing him the whole time even though he was already going about 7 over the speed limit. He was the one pulled over though, and it will become apparent why. The officer who approached him never took his hand off his gun. He harassed my husband for twenty minutes with questions like "When's your birthday?" "What's your address?" after he had already had his license in his hand. He even went to his car to run the license, and returned it asking the same question. It was clear that he was fishing to see if my husband was undocumented. He snorted with disbelief when my husband explained that he was on his way to teach a Spanish class at UNCC. And in the end, not only was my husband too late to teach his class, he was given a ticket despite his clean record. A ticket so horrendous that he had to go to driving school with a bunch of drunk drivers to get the points removed.

And this is not an isolated incident. Horacio was stopped on his bike for passing a stop sign, something that I notice at least 97% of the bikers in Athens doing (and not motorcycle bikers, bike bikers). He was asked if he was "blind" and given a lecture. He was stopped for supposedly running a stop sign when driving the van even though he was stopped TWO blocks away from the said stop sign (the cop visibly following him). When H had to open the door since the window was broken, he put his hands up, and when the cop, hand on gun of course, pulled up beside him, he was scared as he gestured to the broken window that he was going to be shot.

I hear again and again how if you're compliant you'll be safe. If you are an upstanding citizen you'll be protected. And I look at my husband who is a brilliant PhD student, a teacher of many years, an amazing father, and I wonder why he wasn't protected. Why he was harassed whereas I was let go. And it's not just me who has been let go. We watched a police officer give a breathalyzer test to the preppy albeit slightly scruffy young man who had just hit our parked car so hard that the car was blocking our neighbors driveway. We watched at that young man pretended it was his gum that made the alcohol content too high. We watched as the cop refused to let him drive home. And then when we picked up the accident report we learned that the cop hadn't even charged him with drinking and driving. In addition, we never got any money for the car he destroyed because the kid was driving without insurance. H often asks, "I wondered how things would have gone down if I had been the one who hit the car."

The fact of the matter is that if you are a person of color in this country you are in danger. It does not matter if you comply. If you are upstanding citizen (and please don't give me this bullshit about speeding being against the law), if you're educated, if you're documented, etc. I don't give a shit if Brown really did steal some cigars (which it isn't clear if he did and it is clear that the officer who shot him dead did not even know about the shoplifting incident). I don't care if Brown smoked some pot in his life. I'll admit to shoplifting as a teenager. Hell most of my Wild and Wet nail polish collection was shoplifted from the local Woolworth's. My brother stole all the time, and was even brought home by the police a time or two. I have a few white friends who smoke weed and somehow I don't think most of us are going to get down with shooting pot smokers. In this country if you are a person of color, you are in danger just for being a person of color. When you are not allowed to break the law and face the same consquences as your white counterparts that is racism. You are in danger. Maybe not more danger than someone with a mental or intellectual disability but certainly in as much danger. There is an assumption that if you are different, that if you act in a way that is different, in away that does not immediately acquiesce to obedience than you are fair game.

I am not in a place to write as eloquently as I'd like on this issue but there are several very good bits of writing out there. David Perry, in particular, has written a truly excellent piece on the cult of compliance. I can not recommend it highly enough.

Wednesday, July 02, 2014

Camille, Flying

When Camille asked to take trapeze, I did not immediately say yes. Instead I asked her to watch one of Piper's classes, and to think on it. Camille has never been one to bust out into new activities. She's more cautious, and it's harder for her to add new things to her routine. My initial reaction needed to be curbed. Trapeze seemed like a dream to me; something I would have embraced as a child. But too often my own desires clash greatly with Camille's, and for awhile it meant butting heads. Over time I adjusted my expectations, learned to respect the wiring of her brain.Thus I overrode my impulse to gleefully sign her up and urged observation.

Camille persisted in wanting to do trapeze even after the stipulations. We signed her up. Initially she did okay with getting up early . As time went on it was harder to get her moving. But she only refused to go twice in a five month period. I watched her in the class with a feeling of both pride and trepidation. My own childhood filled with ostracization and bullying often colors my reactions to my children's social interactions

Perhaps it's the nature of a class like trapeze that Camille was not mocked by the other kids. Everyone loved that Camille brought a stuffed Pokemon to each class to watch over their practice. There was always at least one kid who admired Camille's Minecraft and Dr. Who tee shirts. No one minded that Camille dressed like a boy. After a fresh haircut, there were lots of compliments on her short funky style.

Of course Camille's behaviors often go beyond the funky and into places that are easily misinterpreted. She would sometimes refuse to do certain exercises or moves. When it was due to overstimulation, she would just go sit and cover her ears with her head down in her lap. Other times it was because the bar hurt her hands. Her teachers were kind and considerate of her needs. They learned to just let her be when she was over stimulated. They encouraged her gently when she was clearly stumped by a move and just stood by her bar. We worked together to come up with a solution to the spray problem (powder is a better choice for Camille).

The biggest test for Camille came when it was time to perform. She was very scared, and I had assured her that she  did not have to do the performance. She wavered for a time but finally committed to performing. I admit I was scared for her. Scared she would freeze in the middle. Scared she would be whispered about. I worried that it was too much pressure and that she would be pushed into a place hard for her to escape. The memories of where we had been was so fresh. The times I had pushed her into places that did not feel safe to her, and the struggles that ensued. We had come so far in our relationship. But it was her choice, and the thing about trust is that you respect other people’s choices.

The day of the performance started rough. She slept late but was still tired when we roused her to shower and dress. She spent a bit of extra of time with her rituals, a sure sign of nerves. But she didn't fight us, and she didn't change her mind. As we got closer to the studio instead of growing more afraid, she began to bounce with excitement. And when she came out to perform? She shone. She bounded on the mats, her head high.  For what seemed like the briefest of times she took flight with that bar. Watching her as she twisted her body through move after move, graceful, strong, and so sure of herself brought tears to my eyes. She twirled, spun, and  flowed through the air. She had pushed herself into a place that  was new and not comfortable at first and made it her own. The air was hers as were the bar and the rope.

When the routine was done, she spun in a circle on her bar, and landed with cat feet on the mat, her arms up in triumph. She bowed with a sense of drama rarely seen in Camille. She was a star and the huge smile on her face as she turned to me let me know she knew it.  

For me it was so much more than just a successful show. It was the culmination of what had been for me a rather scary experiment. You see we pulled Camille from public after school after her disastrous K year. She was mocked and bullied by the adults I had trusted to teach her. She tried so hard to be "good" for them that when she got into our van at the end of the day she would start to beat on her sister. I would pull over and hold her as she raged and screamed taking the blows on my own body.  And then one day we were in the teary aftermath of yet another battle. Camille and I were both holding each other, sobbing while the other children looked on, eyes wide. And I knew there had to be a better way.

At the time, I didn't know there was a whole different way to think about Autism/Asperger's. I only knew that I could not do the same thing to my daughter that the adults at her school did. I had to find a new way to approach her. For the next three years, Camille and I started on a new journey where Camille's neurology was respected. Instead of working to change Camille, I worked on both of us learning to trust her choices and ways of being in the world. Over time, Camille changed. She was confident in herself and most importantly confident in her difference. At the end of this performance, I saw a child who had stepped out into the unknown, confident because she trusted us, and she trusted herself.

In the interest of other parents avoiding the painful path I had to take, I offer these links. Please if you have a child on the spectrum go read these pages. Our children do not have a disease. They are not an epidemic. They deserve acceptance not awareness:

Thursday, June 26, 2014

Never Alone

I was lucky in a way. I was expecting a call about the results of my amniocentesis. I had a two day window. I was also lucky to have my husband and my mom present. When the caller id on my cell showed the Dr. they were standing beside me. I was able to be cry in the arms of people I loved and trusted. I was able to gather a support system on line as well. A group of women from all over the country were awaiting the news with me in spirit so to speak. But even with all this support, there was a lot lacking in how I was presented Jude's diagnosis and what followed after the diagnosis.

When the Dr. told me that my fetus has Trisomy 21, there was a long pause. In the midst of a very emotional time, I was being asked to lead the way. What I wanted, and needed was direction. Finally I spoke up "We're going to keep the baby. Do I keep seeing you?" There was a relieved sigh after I spoke, and he said "I'll connect you to the receptionist to make an appointment." He was clearly happy to pass this time bomb onto someone else. I want to be clear that my fetal medicine Dr. was an amazing Dr. His care was top notch and he was supportive of my decision to keep Jude, and I suspect would have been supportive if I had chosen to terminate. But he clearly wasn't prepared to talk to me about what Jude's diagnosis meant or what steps I should be engaged in upon hearing the diagnosis.

Things with medical professionals just got worst. At the time, I was utterly unaware of what to expect. I didn't know what to ask for in terms of medical care. I was also emotionally fragile, feeling like at any moment I was going to shatter. I loved Jude fiercely but was scared of her future. I was scared of all the things I didn't know about Down syndrome. And frankly I was scared because I was pretty immersed in some ableist thought. What I needed was some information, and I had assumed my medical providers would be providing that information for me.

But that is not what happened. Instead, when I called the midwives office to confirm my appointment, and to ensure that they had gotten my test results, the nurse burst out with "I am so so so sorry." Midwife after midwife asked me tentatively if I knew my fetus had Ds. I finally had to request that the Dr. tell all the midwives that I was aware, I was keeping the baby, and we were thrilled to be welcoming her into our family. I found myself educating nurses, midwives, ultrasound technicians, and doctors at a time when I was still pretty vulnerable. Towards the end of my pregnancy when I requested a non stress test as I wasn't feeling Jude move as much and I knew we had a higher risk for miscarriage/still born, the ultrasound technician told me I was living  her "worst nightmare" from when she was pregnant.

Because I am who I am, I did my own research. I sought out online support and I learned about what Ds meant today. I looked at pictures. I read stories about adults with Ds. I reached to the online groups and I read a copious amount of blogs. I was lucky to be directed to Down syndrome Pregnancy almost immediately. But the point is that my husband and I did this on our own. We were very much alone, left to navigate a whole new world with no supports and no maps. Our core beliefs frankly were a primary factor in how we approached Down syndrome (a strong belief in the value of all humans and in human rights for example).

But now that I a a bit removed from the initial diagnosis, now that I know a bit more about what should have happened, I am a bit horrified. I don't think that anyone on my medical team did anything awful intentionally. I received excellent health care when pregnant with Jude including monthly ultrasounds, and the NCIU staff on the ready during Jude's birth. My concerns were always taken seriously and I don't think anyone skimped on care just because my baby had Down syndrome. But I never saw a genetic counselor and it was never suggested to me. I didn't know that was normal procedure until after Jude was born. I was never given any information about what life with Ds would be like for Jude and for our family. I most certainly was not given any information about our options.

This is why I support the Lettercase's Never Alone campaign. While I proudly remain prochoice I understand that this position also means proinformation. Lettecase has managed to cross a rather large divide in the Down syndrome community by creating a book that recognizes all the options available to women with a prenatal diagnosis of Down syndrome but that also offers important information. As a feminist, I think it is vital that women are empowered to make informed and independent decisions about their health care. When we are denied information though, or not given any information, the power to make the right choice for us taken from us.

When I look at my own story, I realize how incredibly lucky I was to be able to get the information I needed. Not all women are in this position. Some do not have access to computers or the knowledge to know where to look to find support. Other women do not have partners who support them and empower them to make their own decisions about their bodies. There are women in our community who do not speak English and are thus shut off from many avenues of information. There are women who are isolated by poverty and lack of decent health care. It is important that we as a community support these women not just the women who seek us out.

I encourage everyone who reads this post to please go read the link to the Never Alone Campaign. Share your story in the provided box and sign up to make sure that no woman has to make decisions in isolation.

Tuesday, June 24, 2014

Holding You In My Arms

When I got THE call two years ago, I was sleeping. Exhausted from pregnancy and four children, my afternoon naps where like a bonus check at the end the work year. I relished the quiet, dark room with the fan blowing over me, splitting through the hot summer heat. I would lie curled, my hands on my just swelling belly and imagine the world with Jude. I heard the phone ring as I was on that sweet edge before going under, and I heard H tell the kids to ignore it. And then I fell into the warm darkness of exhaustion. But there was a nagging feeling about that ringing phone, a tiny bit of fear that had followed me through out this pregnancy. When I woke up there was a message from my Doctor and I spent the rest of the afternoon and night scared. Knowing.

"Your test results show that you have one in four odds of having a baby with Trisomy 21."

I remember feeling like I couldn't breath. The air felt liked it was being sucked out of the room. I sat down, and held onto the table with one hand. I could feel the fear turning into hysteria climbing up from my stomach and I was only able to get out a question about what was next to the Dr. I had to end the conversation fast or I was going to fall into pieces.

"Well that depends on what you'd do."

Do? What would we do? I could feel my hand fall on my stomach almost protectively. As if I had to shield this life. Protect it.

"Would you terminate?"

"No. Not for Down syndrome." I said. My voice was sure. Stronger than what I was feeling.

A few weeks ago, I woke up a bit earlier than Jude. I was curled around her, and she was leaning a bit into me. She doesn't cuddle much anymore so I relish this bit of touch. Her eyelashes splayed on her round cheeks. The sun shone through the slates of the blinds washing Jude in warm gold light. And I thought back to that phone call. How the thought of breathing would shatter the room into a million fragments. The fear I felt once upon a time. And how now in this moment I could only think of that call as marking some of the best news I had ever received.

Sometimes I wonder why I spend so much time playing with the memories of Jude's diagnosis. I handle them like worry stones, feeling the smoothness of memories. Perhaps it is because Jude's diagnosis wasn't awful and it hasn't changed our life quite as dramatically as I had thought. Perhaps it's because I know Jude so intimately. All of my children share a closeness to me but it only Jude I have seen laid out. I know her chemistry in a way I will not likely know another human beings. How odd it is to be able to look at a piece of paper and the genetic make up of my child laid out before me. I still pull out the photocopy of her chromosomes and find that third mark. It is a mystery really. How these little squiggly lines shape the small human who lies besides me, her breath soft and warm against my chest. We do not fully understand these lines even as we have mapped them. There is so much that they can not predict.

I remember when I was first handed that paper. Jude was about six months old, and I was very in love. Past most of my fear even as I still held a few stereotypes. I saw that paper as a map. Now a year later, I realize that what I held was more of an outline. There was no room to show where Jude will go or where she has been. The route of her life can not be regulated to the neat formation of her chromosomes. There is too much not accounted for on that genetic lay out. A map is always incomplete anyway. It can show us directions but not what lies in those directions. But even with this idea of mapping, I can no longer look at those lines as anything but an outline to a great story.

I carry Jude in me still as I carry all my children. Science has recently told us that mothers carry the genetic material of all their children. It is something that I suspect we always knew in poetry. As I write this, I realize now that my feeling of knowing Jude so minutely is an illusion. As much as I feel I know her, I do not. I do not know who she will love, what she will do, who she will become. She, like all my children, is both known and unknown. And this is the great gift of having children, and of children having a mother. But I suspect that sometimes when we have a child with a label that is easy to think we can know them. That there are certain paths they will take because of the disability. I think we forget too much that they will pave their own way if we back off and let them.

All these jumbled thoughts do not fit coherently, I know, into a neat narrative. But it is what is running in my mind on those lazy mornings or when I am in the pool with a screaming joyful baby. They are with me as she climbs and scoots around the house. Perhaps the connection is that each day that passes more of my own ideas and expectations are shattered. I think that for awhile, longer than I care to admit, that I thought because I knew Jude's chromosomal count that I might have some kind of insight into what makes her up. It was a foolish thought, I know, and as time moves forward and Jude does things in her own way and in her own time, I am reminded again of the great mystery of all my children.

Monday, June 16, 2014

Proving Worth

I have a confession to make. I usually read the comments on articles about things like immigration, race, and disability. I know, I know, never a good idea but frankly, they give me perspective on how people think. Everyone always dismisses these commentators as "trolls" but I am not sure they are so easily categorized. After all, there is usually more than one person saying these things, they usually sound quite reasonable, and they have many "likes". These are not the people who are ranting using hate filled language, and slurs. No the comments that scare me the most are the ones where everything sounds so logical. I see this mostly underneath the articles about Down syndrome especially in the context of prenatal testing.

Through these comments I have learned that my child is not worthy of life. I have been told that I had a societal obligation to abort her. She is, after all, a drain on society. She is "useless." She is "ugly." She has nothing to give. She's going to be a "lump," a "burden," on all working adults. 

And sadly I often find that I have these conversations in person as well. They are of course not worded as above. Instead they are framed in more "humane" ways. The talk of how it's really blessing when a sick child dies. Or questions about how "functioning" Jude is or when will I know how "functioning" she is. The reassurances that she doesn't like she has Ds or that she only has a "little." She's not delayed. While I am sure these comments are well-intentioned, they make me feel like I have to defend Jude. Because, after all, if she is not "high functioning" or "normal looking," she is going to be a burden.

I didn't spend my days before Jude thinking up reasons to allow my children to live. I went about my days with the quiet assurance that they deserved to be here. I didn't even think about the ways I could prove that they would contribute to society. I didn't need to because no one really demanded me to offer up a laundry list of how my kids would fit in, support themselves, etc. 

And then I had Jude. Perfect, beautiful Jude, and suddenly I was thrust into a spotlight in which I didn't wish to stand. A place where too often I had to defend my child's very right to exist on this plane. For awhile I did. I cringe when I read some of my older posts where I try hard to prove the
worth of my child. I pointed to the things adults with Ds were contributing. How beautiful people with Ds are. How these adults are often independent. How they have fulfilling social lives and meaningful relationships.

One day I realized that I, personally, didn't have very many meaningful relationships. In fact, most of my relationships were kind of disastrous. I am socially awkward and often alienate people once they get to know me. I am doing nothing with my degree. I spend a lot of my life playing stupid games on my Ipad or reading really bad mystery novels. I am not sure that my contribution to this world equals what I have taken away. Hell in fact I am pretty sure I haven't earned my keep. Yet here I was trying to prove my daughter's worth. 

I'm done. I am sick of it. Jude has as much right to breath the air as anyone else. I have no idea what Jude's future will look like but I don't know that for any of my kids. I doubt most of you can provide
can accurate future prediction for your own child. Yet we are often demanded in subtle ways to do just that such as when our politicians call our children the future. We, as a society often, see youth as an investment. Well at least certain youth. Because here's the thing: there are a lot of kids who get left out. Kids like Jude. Kids who are poor. Kids who don't go to the right schools. Kids who don't buy into the right ideologies. Kids whose parents are from the "wrong side" of the border. Kids who makes our kids' clothes. I could go on but I think you get the picture.

The reality is that most of us are not going to offer any kind of life changing invention for humanity. Most of us are not going to cure cancer or end world hunger. Really we are not such great gifts to Earth anyway (check our global warming. We did it. It's a fact.) But we are all here, and damn it, we all have the right to exist. Including Jude. I don't need to defend her to you or to myself. Her presence in my life makes her worthy to me. The way her hair smells after a bath. The sweet heat of her sleepy breathing as she curls against me in our bed. The way she laughs in joy at her siblings antics. Her screams of pleasure when we bring her to the pool. In the short time she's been here Jude has already done the most important thing a human can do. She's given us love, beauty, and hope simply by being here.