Leaving On a Jet Plane

Normally, I'm fine with our fairly settled life. We lived in Charlotte for about ten years, and we've been in Athens for two years and will be here for another two. I like the familiarity of a local grocery store or knowing the barista at my local coffee shop. I like having a local coffee shop. I enjoy bumping into people I know at the Farmer's Market. It's a solid feeling that makes me feel I am home. 

And then I go to the airport and am immediately caught up in the flow of movement. The frantic rushes to the security check out. The flurry of trading tickets for boarding passes, of loading ones suitcase on a scale to be sent to the bowels of the monster (hopefully to not be lost). I am charmed once again by the different faces and languages that wave over and around me. As I watch out over the planes lined up in front of  me, I feel the stirring. The wanting to wander, to go to new places. 

I start to dream of once again going to out into the world. I don't think any longer that it will make smarter, classier or better. Of course it will open up new experiences but I understand now in ways I didn't before that being a world traveler is not going to open some new door to the middle class. Now that I am older, I want to travel to see new things, to experience food, music, and places in ways that one quite can't do through a book or a documentary.

And now I want the beasties to do this as well. I watch as they look over across the tarmac to the planes sweeping by, faster and faster until they jolt up. I remember that feeling of being pushed back into my seat as I impossibly lift up from the Earth. Of all my beasties, Umberto is the only one who remembers this sensation of becoming untethered.

Today I am able to still these feelings with the promises of some trips in the future. We are planning (and hoping) on a big stay in Cuba which is something H and I have dreamt of for awhile. And perhaps a winter trip to Mexico. It is enough to think of those future designations. A long with those thoughts, put away for later, are the immediate pleasures of exploring a city we still have yet to fully discover. It is nice to be thrust out of the familiar after all even if that thrust does not push us many miles.

Raising Ghosts

Back when I was young, I was very angry. Anger was my default emotion. I suspect I had many good reasons to be angry but the anger also blocked me from the other feelings that rolled about beneath the hard crust of my emotions--sadness, pain, loneliness. The anger was personal directed mostly at myself but also at those close to me. My anger did not do much for me but it was familiar.

And then I got a job in the Women's Studies Center at UMF. At the time, I did not see it as more than a job in what seemed like a cool place. I spent the summer transcribing the then director's research which I enjoyed. I also began to develop a newsletter for the office. It was a job but an enjoyable job. At the end of the summer, the current director moved onto a new job and the new director came in...at first, I was a little scared of her. She was lovely. Tall, slender, graceful. She was a poet. My fear I suspect arose a bit out of jealously. She was what I had often wished myself to be. 

But as time rolled on this woman became a direct route to how the personal does bubble up into both the political and the public. She introduced to my best friend who became like a sister to me. She helped me become a better, more thoughtful writer (all grammar mistakes can not be attributed to her). But perhaps the most important thing she did was taught me a new way to think about that anger that lie inside me. I began through her classes to learn that what I needed to feel angry about was systematic oppression and that this anger was a better fuel as outrage. Lee did not give me a cause rather she taught me how to articulate the causes that were already deep within me. Through Lee I learned why I was angry, what needed to be changed, and the power of one's voice. And slowly over the years, I began to heal because once I had a place to direct that energy, that anger, I opened up places that were full of pain, hurt and sadness. Instead of wanting to be Lee, I started to want to be myself.  I don't know if I could have the life I have now if it weren't for Women's Studies at UMF.

And now I find myself, someone who believes that one must live in the present, raising a ghost. A good kind of a ghost. That girl back then who was so passionate. So loud. So unafraid.So not silent. Well somewhere along the road she got lost. She got quieter. She would tentatively offer opinions but she was also afraid of offending others. Of hurting others. She was leery of asserting herself in terms of political opinions...she spent a lot of time erasing posts off Facebook because she didn't want to argue. 

Then Jude happened. At the same time, there was big push against undocumented workers. And there were policies being pushed against women's reproductive rights. And suddenly, it was clear that she need her voice, that voice from the past, needed to be resurrected. Through some arcane ceremonies built on the back of love, she began to emerge into this tired, middle aged self. She rose from the ashes of a self-conscious apathy. And once she was here, inside, it was clear she had always been there...there was no lying to rest of a ghost. She was me. My voice. Just waiting for that push, that incantation to bring it all back. Circles not lines. Borders between what was and what is.

“I was going to die, sooner or later, whether or not I had even spoken myself. My silences had not protected me. Your silences will not protect you.... What are the words you do not yet have? What are the tyrannies you swallow day by day and attempt to make your own, until you will sicken and die of them, still in silence? We have been socialized to respect fear more than our own need for language."

I began to ask each time: "What's the worst that could happen to me if I tell this truth?" Unlike women in other countries, our breaking silence is unlikely to have us jailed, "disappeared" or run off the road at night. Our speaking out will irritate some people, get us called bitchy or hypersensitive and disrupt some dinner parties. And then our speaking out will permit other women to speak, until laws are changed and lives are saved and the world is altered forever.

Next time, ask: What's the worst that will happen? Then push yourself a little further than you dare. Once you start to speak, people will yell at you. They will interrupt you, put you down and suggest it's personal. And the world won't end.

And the speaking will get easier and easier. And you will find you have fallen in love with your own vision, which you may never have realized you had. And you will lose some friends and lovers, and realize you don't miss them. And new ones will find you and cherish you. And you will still flirt and paint your nails, dress up and party, because, as I think Emma Goldman said, "If I can't dance, I don't want to be part of your revolution." And at last you'll know with surpassing certainty that only one thing is more frightening than speaking your truth. And that is not speaking.”
― Audre Lorde

So I ask myself, "What is the worst that can happen?"  I will lose friends, I suspect. I will anger some people.  Others will think I am amoral, unethical. But I will not die. And if I did die, would it not be better to put those words forth? Not out of anger this time but out of love. Out of a demand that my child is human. That the people we seek to oppress are human. And I will be called angry but I know better. I know that anger will kill you slowly. It will poison you. I speak out of outrage. I speak out of love. I speak out the knowledge that my silence will not protect me. And I know this because I have lived it before, and I lived. I did more than survive. I danced. And damn it, it's time to dance again. But this time, I am older, a little wiser, and a lot more wily. This time I am not carrying the burden of self-doubt and an anger that I can not touch.

Sweet Spots

Since Saturday was promised by that Holy of all Holies The Weather Channel to be cool (low 80s for all you Northerners), we, the big people in the house, made plans to attend Athfest. We wanted to go last year but I was pregnant and it was really hot like 100 degrees in the shade hot. The beasties of course clamoured their disapproval. Nothing short of being inside all day was going to make them happy but we put on foot down and said "Suck it up wee ones, we're going."

We meet surprisingly little resistance in the morning. I'd like to think the fight had gone out of them but that was a foolish hope. While we drove around looking for a place to park, the whining started. It was hot. Did we have water? What was there to do? Could they buy ice cream? The usual.

But as we started to walk a few blocks to the festival, the mood started to shift. We were passed by some guy in one of those howling wolves shirts with ultra 80s cheese glasses and an awesome 'stache. I looked at Umberto and we both grinned. "That guy was awesome." I said. Umberto nodded. And that kind of opened us up for an awesome day. Even when we got to the opening street and saw this:

I admit, my crowd phobic self balked a bit. I promised the kids and myself that if it was bad, we could always leave. And we marched in ready for battle...but it wasn't a battle. It was crowded but everyone was happy. There was art everywhere most of it beautiful and/or cool. Umberto was finding artists he liked and getting excited about it. The girls admired pottery with me. 

We found a water tent. The little beastie girls got soaked.

There was a free pottery class for kids from a local pottery that does lessons. We had to wait in line for about 20 minutes while behind us many, many little hammers hammered away at a wood project (that part was pretty nightmarish). It was worth it when both girls took to the clay like they were born to it.

Piper was nervous and was doing her balking thing. I had to BEG her to try it and when she did, she loved it. She was also very good at it. 

Umberto pushed past a tiny bit of fear to do some jumping with a harness and trampoline.

We ran into friends and people we just knew by sight. It felt a little bit like belonging. And there was that sheer joy of just being outside, being together, seeing things, immersed in the collective good feel of a community. I realized as we drove home that the day has been quite perfect, and that indeed life was sliding into one of those sweet spots. And that feeling has come again and again since last Saturday. Sitting and reading to the kids while Umberto snuggles Jude. Playing with R who is exploding with language. Going to the pool. Making day trips to Atlanta. 

Last year at this time, things were rough. I was scared because I was about to get an amino that I still wasn't sure if I was going to get. I was scared because I was ignorant and bias. I was unhappy in my life because I was still struggling with feeling useless and wanting to feel important. I was struggling with my self image, my self confidence, all kinds of things with that pesky "self."

I did not know that this year would find me happier than I've been in a long time. My family is complete and perfect. The intimacy, the humor, the intelligence, the warmth, the fart jokes, all of it makes this a place that I long to live in, a place I dreamed of many years. I've become passionate again about equality. I'm reading new things, trying on new ways of thinking about the world, thinking about creation and art. It's a heady feeling. 

A couple of nights ago, I was looking for a post that defined me. It was an impossible task as there were so many. But I found a birthday post I wrote when I was 34 about how I never wanted H and I too look back and say "Shit I wish I had done that." It was in reference to grad school which was a super ballsy move on our parts. We risked a lot and those were sweet years indeed. I realized that I still find this true today, and I still think we can say "Shit we did it." We are still here living life, taking risks, raising some serious righteous children. And I find I'm about to take a few more risks with my writing because I realized the other day it was the only thing on my "shit I wish I had done list". I'm not sure where that will go but right now as I bask in the sweetness of life, it feels like it might just be okay.

[Re] Seeing

Mirrors line the front of the room in which I exercise. A reflecting wall faces the multiplicity of machines and the bodies pushing, pumping, running, walking, pedaling. At first, the compulsion to stare at myself as I worked out was too great. I suspect the mirrors are there as a teaching tool--a visual reminder to move with correct posture, to watch your form so that you do not hurt yourself. But for me, and I suspect for many of the other people in the room, they were a wall of self-loathing.

Moving my body in time to whatever music I plugged myself into, I'd look up and catch a glimpse of my protruding stomach, hanging flaccidly over my pants. Even with no baby there, it looked like it housed something. As my arms pushed the bars forward, sweating beading onto my forehead, I would see from the corner of my eye, the reflection of sagging arm flesh waving merrily in the motion of my body in action. I did not think to myself at those times to keep my back straight, my head over my shoulders, a straight  line. Instead, I hated that body. I hated the doughy flesh that jiggled and rolled in time with my steps. I despised what I thought that body meant: the excess, the over indulgence, the visible sign of no control. I was gross, undisciplined, unlovable, and hideous.

And then the day came when I held a baby who many people in the world label as so different she could not possibly be beautiful. A baby that I had feared would be hideous because of her difference. I was not proud of those feelings because they were ugly. When I looked into her face, she was beauty itself just as all my children had been to my mother's eyes. Her tiny perfection, oh those eyes, the little snub of a nose, the mouth pursued and sweet. There was nothing ugly about this baby. Nothing ugly about her condition or the others who had her syndrome.

And then came another day when my other children hugged me and told me "You're a beautiful mama." Or looking into their faces and seeing reflections of me. How could I call this body ugly when I could see it's traces in the bodies of my own children?

The other day, I stepped off my machine, feeling good about moving. The freedom of moving. The joy in pushing those muscles, those joints into flight. I looked over and saw myself stepping down. And yes the fat was still there but I didn't see the ugly this time. When I felt myself starting to wander into those dark moments, I stopped myself, and reined my mind back to the world where I am a worthy human being not in spite of my body but because of my body.

Junior High Tactics

H taught Jr. High a few years ago so I became an expert on Jr. High humor. I can't say it was enjoyable. H reported many conversations that went something like this:

Student to another student: "You're such a re@#$."
H: "We don't use that kind of language in the classroom."
Student: "Why not? It's not a swear word."

Imagine my surprise when I find myself engaged in this kind of conversation with grown ups. Accordingly I discover that when I call people out,  I am a pearl clutcher or over-sensitive. I hear excuses like "It's just a medical term used to describe someone who is a bit behind in you know...development." I'm accused of not respecting my own child because I dare to suggest that this word could be perceived as an insult to her. You see I must be an awful person to think of that word in relation to my child. Not really shocking when you realize how many medical books still refer to Down syndrome involving mental retardation. Yet I bet if we pushed these users to tell me who they imagine when they utter these words, they would imagine the kids from the "special" room. Maybe even my kid. I bet it might even come to them unbidden.

Oh, they are awfully attached to a word one would expect to only be thrown about by a bunch of Jr. High boys (for the record my own Jr. High age son would rather die than use this word, and has been known to school people who do use it). And it's not just the R word they bandy about and then defend as doggedly as one would say a good cause. It's the multiple references to people with intellectual disabilities. Comments about the "short bus" or "Life Skills Class." They call people they don't think smart "special." And for all their defense, they only use the words, images, etc in reference to people they don't value. They use it because to not be smart in the rather limited way we see intelligence is worthy of insult.

But why do they defend themselves so adamantly? These people who would never say "That's so gay" about something they consider lame? People who would never let a racial slur slide from their lips? I suspect that for many being schooled on language is a new experience for them. They are not used to being told they are being ugly, insensitive, cruel. And instead of saying "Shit you're right" they have to defend their honor so to speak.

Still that is only part of the story. The other part of the story is that we live in a society that does not value those with intellectual disabilities. There are philosophers (cough Singer cough) who think it's a mortal sin to eat an animal but have no problem suggesting we just kill babies with disabilities. And while I am not suggesting that those who sling the word around think this way, we are all products of this kind of thinking. This is why I though my world had ended when I found out Jude had Down syndrome. Language shapes us and we use language to shape others, to shape our values and our culture.

Lastly, I just want to point out the simple fact that the word, the references, are just not funny (unless maybe you're 12 or something). It's not funny to mock special ed classes where kids are often pushed into just because there are no resources for inclusion. It's not funny to think about kids who need a bus with a lift for their wheel chair. It's not funny to use a word that arose in the heart of eugenics. Perhaps, it's time we mature our humor palate.

Holding Onto Light

Today has been a day filled with news of death in the special needs community. Some of it just a horrible misfortune in medical malfunctions, and some of it more sinister. It's hard to not find myself in tears over these things. The whole community is in mourning I think. When my community mourns, I mourn as well. It's too easy to think of how this could be us.

I had a post planned today. A sweet bit of fluff post. As I read these things, I felt like I couldn't write that post now. My heart was so heavy. But then as I played with Jude, and took a gazillion more pictures of her, I felt that maybe I needed to put that bit of fluff up. Because really what the post was about was about how Jude is here, loved, and typical...typical beastie that is.

And being a typical beastie is NOT like being a typical kid. After all the beasties are quirky and eccentric perhaps. Some of them have seizures and have to take meds every night along with monthly blood draws and yearly EEGs.

In our house, social miscues are pretty routine. Insomnia is a plaguing feature of our nights. And we all learn from the periodic fascinations that overcome a certain beastie girl. We also have to figure in ritual time before meals and leaving, meltdowns at the park, and a certain bluntness that crosses that fine polite line.

Some of us are anxious (mama's been kind of a freak about the whole dry drowning thing) to the point of panic attacks (thankfully few and far between)...an anxiety that too often paralyzes talent and skill.

There are toddlers amongst us who scream and cry a great deal. Who don't transition well....we're not sure where's that headed but we take it in stride.

Just for the record I didn't purposefully capture her screaming...this started off as a happy moment.

And then we have Jude who has that little bit of extra. It's all good.

Because really the beasties are just who they are: awesome, funny, smart, beautiful. This family. Being us. In our home, they are not Other. I wish sometimes I could build up a big wall to keep them safely enclosed within our walls. But that's not how things work. These beasties are growing out...spreading their tender roots along the ground. 

H and I don't shield them despite what others may think about our homeschooling. We talk to them openly about violence, racism, sexism, ablism. We tell them why we cry. We have conversations about things like Newtown, the way that Twitter handlers talk about girl gamers, and why people hate immigrants. Our children learn about this ugliness though from us not because some asshole called them a Spic or a retard. And I've watched as these beasties have grown into self assured kids who stand up for things. Who are not afraid to call people out on hate language or say "Whoa dude that's racist."

A couple of months ago, Camille had a dentist appointment. She was pretty traumatized and even started to cry in the exam room. Her visit months earlier had been rough and she associated the dentist with pain (who doesn't right?). As we waited for Umberto, Camille engaged in some behavior that was self soothing but not totally socially appropriate. She wasn't bothering anyone so I let her alone but I did notice two little girls, the kind who look oh so normal and oh so mean whispering about her. My impulse was to stop her but Camille didn't give a shit. She gave the girls one of her withering looks, and they kind of slunk down in their seats. 

I worry about my children who are not Other. Who have not grown up to think of themselves as Other. Will the world break them down? I like to think they will remain these towers of light that pierce the darkness of ignorance, hate, and fear. Until I have to set them free, I will hold onto them, fighting hard to make this a world worthy of them and others like them. Holding onto light is hard: it burns, it makes you raw, it opens you up to pain. But it also shines out through you, and if you let it it forges you into something lovely.

The Simple Humanness of Jude

Lately, I've been over-run and over-comed by stories of ignorance and cruelty concerning people with disabilities. Many times these stories feature people who have "good intentions." People who want us to love babies with disabilities DESPITE their disability. Sometimes though the stories are darker: people being beaten by the police, or by hateful youths. According to local politicians people with genetic differences are the physical results of sin.  I read about how people with disabilities are a drain on society and this usually leads to conversation where people with disabilities are pushed to demonstrate their worth. I am the shoulder many friends cry upon as they battle with their local school districts to get an education for their children with Down syndrome. I am a witness to the struggle for the recognition of humanness for a group of people who shouldn't have to fight this war.

But I am also a witness to the everyday humanness of my own child born with Down syndrome. I have often written about how I was devastated when I first learned that Jude had Down syndrome so I won't rehash those feelings. But I do want to emphasize that all those fears involved an inability to see my child as fully human, as worthy, as quite simply part of the humanity in which we all live. Love does not always involve respect, I think, so while I loved her greatly, I struggled, initially, with not seeing her as complete or whole.

I asked H the other day why he had never been upset about the Ds, and he said "This is a good example of how theory shapes life." I thought a lot about this last night as Jude nursed to sleep and then cuddled against me. Earlier in the day when talking to my mother about therapy, I had expressed to her my frustration with the end goal of trying to make Jude fit some mold. I said "You know Jude is pretty much following the same pattern as the rest of the kids just a bit slower." And I realized how Jude really was just another beastie albeit with some different considerations but different considerations is something this family is used to. Meanwhile, H has introduced me to things like decolonization, and I start to find my thinking shifting. Like H my theory is starting to shape my life.

Every day I experience Jude not as someone who is in need of repair but as someone who is just a baby. I feed her, snuggle her, play with her, get annoyed when she's yelling for more attention. I bathe her, rub her with lotion until she smells like a tropical beach, and dress her. I fuss over her hair. Take millions of pictures of her because she's so damn cute. I bring her shopping wearing her in my sling, I kiss her hundreds of time. I leave her on the floor so her siblings can play with her. I forget to do tummy time. Sometimes I worry about her future, about the tests we need to do but in my world that is not a new experience. I worry about all my kids. If anything through Jude I've learned more about living in the present than I ever have before. But what it comes down to for me is that Jude is different but that difference does not equal a whole separate category outside of my other kids. They are all different in many ways, and I've had to adjust how I parent them because of these differences. Those adjustments didn't make them less human though or less worthy of dignity, respect, etc.

You see I am starting to see that if we can shift our thinking about what it means to intelligent or valuable or worthy that we can shatter the stereotypes that hold so many of us in places of subjection. Because of books like Local Histories/Global Designs, I am challenged to rethink what I held as valuable. I am reminded that there are equally valid but different ways to view and to understand the world. Jude's going to see the world differently than I perhaps but that doesn't mean her way will be less. Perhaps her way is better. I don't know. But I know it's as worthy as attention as any other way of being in this world.

This is important to what I talked about above. Our kids are joining the great march for Civil Rights traveled by so many others: African-Americans, Latino/as, Native Americans, Asian Americans, LBGT people, people with disabilities. We are at a crux, I think, where we MUST change how we see and treat difference. This is WHY People First Language is so vital. If we don't change the way we speak about people with disabilities, we are not going to change the way we think about them and thus the way we treat them. Language and theory and experience are thread together in a complex weaving--to take one thread out is to dissolve the whole pattern. If we want our children to not be beaten by the police, to not be seen as object examples for a second class kind of love than we must work on all of these things at once.

Nuns, Buses, and Introduction to Protesting 101

H and I often talk about how important it is to introduce the beasties to protesting. As the beasties will gladly tell you we often try to engage them (bore them to tears I'm sure) on questions of social justice and the importance of making your voice heard. But we haven't given them as many as opportunities as I would like to have their bodies on the ground so to speak. As a big believer in educational action, this seemed a big gap in what we were doing. I had many excuses...after all it's hard to get five beasties out the door anywhere much less to an organized protest.

So when I woke up late Wednesday morning, after a rather hideous night of putting together an Ikea bed (beer was involved but did not help), I was not in any mood to drive to Atlanta to stand around in the hot Southern sun. But as I sipped my coffee, I started to feel like this really needed to be done. H and I forced beasties out of bed, took hurried showers, and made up some signs.

Piper was super excited to make her own sign.

We had a rough start...lots of stopping to get food, coffee, you know the necessities of life. Gone are the days when going to a protest really only involved rolling out of bed, grabbing a coffee, and heading out. Protesting with kids involved a level of organization that I was only used to when being, well the organizer.

But we got there. We parked the car, and saw a small group of people walking towards a main through away. Later Horacio and I and both confessed that we were really bummed that there were only a handful of people. We got the kids out, got our signs, put little beasties in the stroller, and strapped on the diaper bag. It was hot, and as we rushed to catch up with the group, sweat was already pooling down my back. I was waiting for the kids to complain but surprisingly they didn't.

We found out the group was actually a splinter off group going out to meet the nuns with their signs. Security had, apparently, told them they had to put their signs away. The senator the nuns were meeting conveniently had his office in a private building thus disabling protests at his office.

I was kind of eh about this side trip, aware that we had a finite amount of time with the kids but the girls were super excited to get to greet the bus. We all waved and yelled and waved our signs including Piper and Camille. We even got Umberto to hold a sign. 

The woman in white below was awesome. She's from Move On in Atlanta and her passion is seriously contagious. She was thrilled to have the kids at the protest, and excited that we hope to do more activism in the area. She knew about immigration and cared deeply that justice happens for those caught in the system. It's inspiring to be around people who care and know...it fuels your own flame no matter how tiny it might start.

We turned around and began the walk back to the office. The kids went willingly, I suspect taking pleasure in the attention lavished on them. They held up their signs at all the cars passing, pleased when someone honked and waved. Umberto was a little grumpier but didn't complain. When we got to the office site, we were getting the kids under the porch where it was shaded. As soon as I had Jude out of the stroller, a security guard came over and told us we had to leave. He was the nice one. He was shooing us all off, having a fit if anyone held up signs but he was least polite.

But then another security guard came out and he wasn't so nice. He threatened to arrest us, and was verbally abusive, yelling at older ladies...getting into people's faces. Umberto was thrilled to hold up his sign in his first act of civil disobedience. I suspect this was by far the most thrilling aspect for him. As we started yet another long walk to a new location, I talked to Umberto about Thoreau and his concept of Civil Disobedience, and introduced to others like Gandhi who used this method to protest oppression. Breaking the law is fun and games to a teen age boy but I wanted him to understand the harsh consequences often visited upon people who stand up to oppression.

As we crossed the major through way to a shopping mall parking lot, Camille held up her sign proudly to the cars stopped at the lights. I felt the tears coming and I know, I know, kind of silly but this is my moment of pride. My kids, protesting for something we as a family believe in, proud, defiant. These are the kind of people I want to raise. Coming to the protest was all about this..showing them that they are part of a community, introducing them to the excitement of standing with others and doing the right thing. 

The girls drew a lot of attention, and they handled themselves well. Piper who is so self conscious talked to reporters, held her sign up for both still and news cameras. She even went up front by the bus with her sign for an official picture (and got fussed over by some sisters). Camille did not want to be on camera but she held up her sign, videoed taped the gathering, and was interested in what was going on around her. Jude was a big hit as the youngest supporter in presence. She got a sticker and a picture taken of course. 

H and I did an interview with someone (not sure if they were news or if they were documenting for the Nuns on the Bus). H was brilliant, and mentioned Freedom University a number of times. He talked about the social construction of being undocumented, etc. I was more flumbly as I am with the camera but I did manage to talk a bit about why we had brought the children and about how even legal routes to citizenship were problematic in terms of money and personal humiliation. 

And of course I was super excited to meet the Nuns on the Bus...it was an honor to stand behind them (I'm behind the guy with the big Reunite Families sign). And I got to hear Sister Simone (I admit I'm a fan girl and was bummed I didn't get a photo with her). The kids held up well but it was hot so we had to leave...R kept crying that she wanted to go to "Tlanta" aka downtown area. We missed the SIX police cars sent out after the event was over....

The night before we left for the protest, we talked to the kids about why we were going to the march. We wanted them to understand that this wasn't just about other people but about them. They are Latino/a and they will have to face people who don't see them as belonging here (despite the fact that they are all American citizens). We wanted them to realize that thread that connects them to undocumented immigrants as well as to the greater human community. My children live in a state that has legalized racial profiling. My children are American citizens but because of their skin color, they have to prove it. I don't have to prove it.My white readers don't have to prove it either. Instead we are assumed belonging because of our whiteness. At the event, we saw people of all races, uniting in that human community, calling for justice, for the recognition that humanity does not have borders.

Saturday Five O'Clock Mass

Jude nestles against me in her sling, sleeping, her lips parted as wispy breaths blow against my chest. I'm quiet, trying to look like I'm praying but really I'm looking at for the regular altar server. I tell people I come to the five o'clock mass because I just don't do mornings which is partially true. But I also come because the altar server has Down syndrome. And I like watching him go about his task. I like seeing him up there on the altar with the Friars.

The last mass I attended he was clearly in charge. He directed the other younger altar server. He performed his tasks efficiently. And I thought about how important it was that everyone sitting here with me was seeing him. Every Saturday (and Saturday mass is filled with regulars) these people see him. Up there.In the front. Not hidden away. He is not a tragedy or a source of sadness. He is a part of the community. The body of Christ.

After the Eucharist, as I am kneeling, awkward with the weight of Jude against me, pulling me toward the pew in front, I think about the face of God/dess (God is without gender I believe). If God/dess is what encompasses all of human expression, and if we are made in God/dess' image than God/dess must look like the face of my daughter as well. After all if  He/She is to mirror back to us own collective reflection, disabilities both physical and intellectual, are woven into that matrix. 

Thinking of the Blessed Mother, Mary, I am reminded of her multiple manifestations throughout the world: African, Latin American, Asian. She comes to us with our faces, our bodies, our skin. She wraps us in the embrace of the familiar. The Saints function in that way...a bridge as Orsi might say between earth and heaven.

But what of disabilities? I have never seen Mary portrayed in a wheel chair. Or with the features of Down syndrome.

I am still as the violin at the front mournfully calls the community to the body of Christ. The last supper. I wonder if I do an Internet search if I could find these images. And I think of how many people would call them blasphemous and I wonder why that is...I think of how many see God/dess as both male and female, of all races, but yet might not be able to imagine such a thing as God, or Christ, or Mary having Down syndrome. 

And while I watch the altar server put away the dishes from the Eucharist, I wonder what would it be like to be in a place where the leadership is open to people like him. If the great mystery of God/dess is that we are all one humanity why don't we see everyone up there? And I start to feel that wound I feel when I think of what a future where Jude is not fully integrated wholly into the human community. And I start to crave a religious vision where Jude is not just a server but a leader. A person guiding others because who are we to say that Jude doesn't have as direct a line to God as any of us?

Piper Goes To School

Piper went to school last year. No Not a normal school for our quirky beastie. No we found a little unschool, Freedom to Grow, where she would go two days a week. Piper is our out there kid. She always wants to be doing things, playing, going places. We hoped school would provide an outlet.

First day of school

There was so much to do, and the school welcomed our family to get involved as well. There were animals, field trips, and special days. Piper saw plays and choral groups. She went to the rec center for PE. She roamed the woods and the beach. There was plenty do for an energetic girl.

Meeting some seriously large tortoises. 

As Piper has gotten older, I've started to notice that much of her exuberance has begun to be dampened under extreme self-consciousness. Fear was staring to take over Piper's spirit. She didn't dance as much or sing aloud. She was constantly telling us that her drawings were awful. It was like someone was turning a dimmer down on her vibrant self.

When the school went horseback riding at a school mate's stable, Piper was initially excited. However as our line crept closer toward the pony, she started to tell me she didn't want to ride the pony.She said she was scared but I noticed her casting glances at the other kids. She was scared to ride in front of them. I talked to her but she wouldn't budge. I sadly helped her take her helmet off and we leaned against the fence. One of the teacher's noticed Piper hanging by the fence and approached her. With a lot of gentleness, she got Piper on the pony. I cheered out loud because Piper was making a step towards the vibrancy I expected from her.

And I've watched Piper blossom this year in terms of her friendships. It has not always been easy for her, and there were many struggles with other girls. I'll admit my kids are a little sheltered when it comes to girl drama, and I did worry about this when I sent Piper to school. She had struggled with this at park days and I was worried about the day in and out. And yes there were struggles as Piper dealt with different personalities, spats between friends, and the pain of rejection. These lessons are painful to experience, and hard for me to watch. They bring back so much of my own pain at being the weird child left out. At FTGU, Piper wasn't the weird child though, and by the end of the year she had made good friends. She had also learn to negotiate reaching out to others, and making friends with people she might not have originally imagined as being friends.

And I think these friendships have helped Piper in her relationships at home. Having friends who help her, and encourage her has given us a pathway to talk with her about patience and understanding with R. Her new love affair with Jude, a beautiful and awesome love, that made her vulnerable also I think benefited from school. I think this vulnerability gave her strength because after expressing to us her fears, and after our encouragement to love without restraint Piper did start to reach out more. 

Academically, Piper exploded. She went from being pretty much a non reader to reading chapter books and manga. Now Piper's nose is always buried in a book. She begs to go the library as she whips through series after series. 

And it's not just fiction she's reading but non fiction. Piper studied bats in the fall, and I knew more about that species than I ever wanted to know. I was lucky enough to be in on that study at her school, and it was delightful to watch how excited Piper was to learn new things. Piper saw the beauty and joy in bats which is something I never thought possible but I sat here growing as excited at she as what we were learning. She took her information and created her own book.

And with the reading came a love of writing. Piper learned to journal at school and she loves it (how can I, her mama blogger not be proud of this new love?). I find journals she's stabled together and filled out all over the house. The one below was quite moving, a love letter to Jude which is part of a whole journal she's created to give to Jude once she's older.

And this creative building in writing and reading is something I really see fostered at FTGU. Piper always liked to craft but she really wanted me to facilitate it. I'm not a crafty person and it's hard for me to make my big plans into reality. I'd encourage Piper to just do it but she'd drag her feet and end up doing nothing. At FTGU, she learned to be more independent. Now at home, she's always putting things together...crafting collages, boxes, whatever she can get her hands on. Her handmade journals are works of art.

Bird Toy 

Bat Cat by Piper Fall of 2012

Tree Fur by Piper May 2013

Twice in the school year, Piper gave us a presentation of the work she's done over the course of the semester. I loved watching her giggle her way through the presentations but she still did it. She broke through her embarrassment to show us all she had learned. And it was always amazing to me how much she had crammed into a year. Nothing too formal but just the wonderful learning that comes from joy, interest and excitement.

In addition, I was really thrilled with Lora's end of the year report for Piper. I felt she understood Piper and she was seeing both the things that gave us such joy with Piper and the things that concerned us. It's nice to see that a teacher and a guide really gets who your kid is and where they might want to journey next.




This year has been an incredible year of Piper. It's been a mixed bag of course...it wouldn't be a good life if things were too smooth. Over this year, I've watched Piper spread her roots across the ground. Not up or down but instead across the horizon. We named our little home school Mille Plateaux years ago in honor of Deleuze because we adored his idea of rhizomes. "A rhizome has no beginning or end; it is always in the middle, between things, interbeing, intermezzo. The tree is filiation, but the rhizome is alliance, uniquely alliance. The tree imposes the verb "to be," but the fabric of the rhizome is the conjunction, "and..and..and" This conjunction carries enough force to shake and uproot the verb "to be." Thousand Plateaus 24. What has happened for Piper in this little school that is by the train tracks is that she has contiuned into the myriad forms of becoming. Her school and Lora did not try to push her into mold. She was not fitted with wood stakes to force her into a linear growth. Instead she was allowed to spread out to become an and...and another and. Her life has not grown away from us to sweep the sky while we sit about her roots, instead she has expanded into ground, into new areas while remaining near us as well. To find a school that encourages that "and" is a rare gift.

I encourage those who can to consider donating to the school's scholarship fund. This fund directly impacts Piper but also will help other families realize the freedom to learn in a way that opens up the "and" in a child's life. Lora wants to make sure this vision can be realized by parents who might not be able to afford the full tuition. Click here to learn more.