Tuesday, May 28, 2013

Rainbowsouffle Giveaway

Even my giveaways have to start with a story....

When we lived in Charlotte, we used to go to the Barnes and Noble in the Southend almost every weekend. Rowena began this tradition with us as a weebaby and one evening she attracted a beautiful little admirer. This is how we meet Marybeth creator and owner of RainbowSouffle. We ended up having quite a few friends in common (homeschooling/natural living community). Marybeth's daughter (the R admirer) always wore the cutest skirts and it came out that Marybeth MADE them. I was duly impressed since I can barely sew a button on and told her she should sell them. I was thrilled when she started an Etsy shop.

One of my favorite products from Rainbowsouffle is the Jetpack toy. I was so excited when she sent one for R to play with and for us to both review.  We choose a jetpack in pink because sometimes R is a girly girly type:) 

The packs also come in silver. I love the pink of this pack though because it's not soft and stereotypicaly girl pink. There's a pop to it that makes it a little on the punkier side.

 I also love how colorful and fun the buttons are, and flames? Well flames are always good! Everything is sewed on tight and I didn't worry at all about R being rough (she plays hard).

Most importantly R loved it. 

She was super excited to get a package in the mail and then even more excited to wear the pack. She loves running around with it on and pretends to be flying. I love how the toy is lovely and simple in that wonderful complicated way that good toys are....it's simple in the sense that it doesn't have all the nosiy gadgets but it's full of potential stories and play. Really the best kind of toy. All of RainbowSouffle’s products are crafted with love and care. They would make an excellent gift for any parent interested in fostering their child’s imagination in a rich and fun way.

I asked Marybeth a few questions so everyone can get to know her. I even learned some new things.

Who she is and what she does:

Hi! My name is Marybeth, and I am a (self-proclaimed) happy, hippie, sew-at-home mama to my 4yo whirlygirl Teylor. I run a colorful Etsy shop called Rainbowsouffle, and recently founded a popular Natural Parenting Site dedicated to highlighting companies, products, and programs Natural Families can trust called Natural Mom Reviews. My etsy shop is my portal for offering family friendly, kid friendly creations that meet our family values, or are dreamt up by my daughter- such as my wearable jetpack toys! Teylor is probably the most creative person I know, and she is constantly inspiring me to dream bigger, and help make her dreams come to life in the process. Last year she wanted to dress up as a character from her favorite game (Doodle Jump!) and begged me to make her a JetPack to play with. So I did, and they've been such a blast to make for kids everywhere! Near Halloween, she asked me to make her a rainbow dinosaur tail, and so the Rainbowsaurus was born. I also list (from time to time) children's shirts that say "I  My Moms!" or "My Dads Rock!" which are my tribute to celebrating families of all types and colorful kids like my own.

Why do you think natural living is so important?

Why do think natural living is so important? I think natural living is important because it's best for the health and safety of my family as a whole, for us as individuals, and for planet earth. It's not always easy or even achievable, but I strive to live as simply& as naturally as possible

Favorite Mama moment? 

My favorite mama moment so far has been listening to my daughter read her first book. The sheer joy and pride I felt for her, as well as the self-confidence she gained from discovering reading has been insurmountable. I suspect it will never lose its magic for her, just as reading is one of my favorite things as an adult. 

What are you reading right now?

I am reading 'The Count of Monte Cristo' again. It is my favorite book and I read it at least once a year, sometimes more depending upon how quickly I finish it! 

And what's your idea of the perfect Sunday? 

My idea of a perfect Sunday is sleeping in late, walking or biking to the park as a family, having a picnic by a stream while the birds and squirrels chatter around us, napping in a hammock, ordering some yummy Chinese takeout for dinner, and watching funny movies before bed.

RainbowSouffle is generously offering a giveway of either an awesome Jetpack or $40 worth of other items from her site. All you need to do is comment on this blog and go like Marybeth’s wonderful Natural MomReviews! The beasties and I will do a drawing on Friday for one lucky winner! I hope everyone takes the time to go look over Marybeth’s lovely items, and to check out her reviews (she has some great products over there and she does lots of fun giveaways too!).

Thursday, May 23, 2013

Just Your Average Pool Baby

Jude loves the pool. The first time we bought her she fell asleep as we walked her gently in the lap pool. The second time I brought her, she played. She splashed. She kicked her legs. She laughed and blew raspberries. I wasn't surprised. All the beasties have loved water. As I swished her around, we drew a lot of attention from the kids around us (R insisted we stay in the kiddie pool).

"Your baby is so cute!" two little Hispanic girls told me as Jude stuck her tongue out them.
"I like how she sticks out her tongue!" one girl laughed. Then "Are you from Mexico?"

Another little girl, white this time, jumped into next to us and said "I like your baby. Where are you from?" 

I found myself bemused that these children did not notice that Jude had Ds but did notice that she looks brown and I'm white.  And I found myself relaxing for the first time in a long while. Kids, who have a tendency to just blurt out whatever they happen to be thinking, didn't see anything worth asking about Jude (except her skin color and likely my skin color). I realized that maybe people did just see a cute baby. I didn't feel the need to out Jude. Instead, I just let the kids, and eventually the adults, admire her. She didn't need to represent anybody but Jude.

Over the last few weeks, I realized I had stopped blurting out that Jude had Ds to everyone I meet. It simply wasn't important for strangers to know. I was no longer worried about "looks" or "questioning gazes." If they were happening, they were irrelevant in the space of the busyness that is my life. I also think that as the days slip into weeks and into months that I no longer find Ds to be the center of our lives. It is there of course but it is not something I compulsively toy with or worry about. It is simply one piece of Jude just as are her brown hair and those shiny brown eyes. 

My concerns about Ds have become bigger, more abstract in some ways. I still worry about equality. I am still heart broken over Ethan Saylor. Because even as the Ds fades into the background for our family, it does not for most of the people in our world. Ds is still a mark of difference. An insult. A blot that should be cleaned up or hidden. A thing of pity. I know that to have Ds is not to be any less human. I live with Ds everyday so it has become simply a part of the texture of my life. I wish that we could weave this thread into the world...so that those children in the pool might grow up to see that Jude is just a variation of human. Like we all are.

Friday, May 17, 2013

Marking Time

Wednesday we went for a walk on the UGA campus, and visited a favorite haunt...a lovely little "pond" filled with turtles. As we looked at the turtles, and laughed at every one's attempts to catch them, I kept holding Jude close. I felt tears pricking at the edge of my eyes, and I didn't know why. I wasn't sad. Catching turtles is not an emotionally charged event for me. But for some reason there was this big well of emotion deep inside my gut. I found myself looking away, wiping tears, because I wasn't sure I could explain to everyone why I was crying.

Once we got home, I found some pictures from last year....

And I realized we had been there before when I was newly pregnant with Jude. Before we knew anything about the extra stuff. I was about to go see the Fetal Medicine Doctor. About to get the call that would change my life. I remember I was feeling incredibly conflicted about the pregnancy. I was excited but scared. Worried but overjoyed. I wasn't sure if it was the right decision even though it was something I wanted. I was worried about my motivations. 

When we found out about Jude, I went through a lot of guilt. I had asked to much of the universe and was now being punished. This is what happened when you pushed your luck with getting pregnant at my age. I had too many kids and look what happened. I hated these feelings, and tried to convince myself that Jude was a gift. But I don't think I really believed it until I held her and fell in love. Now I can't imagine our family without her, and I am still dazed with how crazy in love I am. Jude is the completion, our full circle.

Perhaps because of this Athens has become impregnated with meaning. Each place we went to when I was pregnant is now full of the secret of Jude.

Camille then....

And now...
Piper last year...

Piper now...

Umberto on the cusp to teen
And now a teen with a little love to follow him
R was still a baby....
And now is starting to become a girl...

just living in the love that is Jude

Horacio with one baby...

Now with one more baby
And now there is Jude...the completion and somehow our center.
Perhaps time is not linear but like worlds within worlds. Marking the passage of time is perhaps a way to remind us to look for the markers we left on the trees.

Thursday, May 16, 2013

Finding Camille

I'm a big proponent of letting your children choose their own hair styles but Camille's hair problems were challenging my ideals. Last weekend was rough. She wouldn't take a shower because she hated the feeling of water going over her hair. Every shower was a battle whose contours we knew too well. When we finally got her into the shower, we still had to face the brushing out of  her hair. Last weekend, I had to cut out huge flattened mats that were beyond the power of my combing ability. She cried the whole time I was trying to brush. I hated hurting her and I finally said "You have to cut your hair. I think you're not cutting it because you're scared. The problem is that you are not willing to take care of your hair and we can't keep on this way." Then I made a deal with her that we'd look through some photos of short hair and we could find something she liked.

She ended up liking the hair cut I wanted. I was nervous. It was really short...as in cut with a razor short. It was also edgy, tough and cool as hell. Aka Camille style. But I was worried about how she'd look. Short hair is an interesting thing to pull off. I was nervous enough about myself.

So on her tenth birthday, we got up early to get her first hair cut since she was six. She even got up before me because she was so excited. As she sat in that chair, and the hair came away (she saved her pony tail for Locks of Love), I watched as her face emerged. Her face that had been hidden away was revealed from behind that mask of hair. Her big eyes, her lovely check bones. One doesn't ever forget that their children are beautiful but sometimes there are these stunning reminders.

Camille free of her hair shone. The fierceness of that face. The joy. The intelligence. The way her eyebrows shoot up with her clever wit. All that was bared before the world. For some this might make them vulnerable but for Camille it was a declaration.

Monday, May 13, 2013

Dream Worlds

For the last few weeks, I've been having intense dreams. Vivid, full of color, ones that often leave me tired upon waking up. I can't remember most of them. I wake up and the haunting edges of these other worlds are there close enough to touch but not to remember. Because I wake up so often, I can lay awake washed in the emotions of said dreams even if I can not nail down the details. Sometimes though the dreams are so strong that it takes me some time to locate myself in this world.

In the wee hours of this morning, I woke up feeling rather joyful. Puzzled. I had to lay for a moment and sort through the rolling aftereffects of my dream. After a few seconds, I was able to catch hold of a bit of plot. I had dreamed that I found out that I had Down syndrome. I was my age so it was quite a surprise. In the dream, I was confused as to why it had taken so long for everyone to figure it out. But I wasn't sad. I didn't dream of Jude but when I woke up I had this sleepy feeling that she was indeed very much a part of me.

Now that I am awake in this light of morning I am able to analyze beyond the feelings left like a caress from the dream. I can still touch the feeling of joy I felt when waking up to feel Jude so deliciously close to me. As I sit here typing out, trying to grasp at why this dream meant so much, I remember the science that showed how we quite literally carry all our children within us..cells from all my beasties are still in my body. I knew there was something deeper that was going to come from that knowledge....something that would come slowly to me as these thoughts often do. And I suspect that these thoughts slowly migrated to that other world.

What I realized last night is that I had always felt a lingering sadness that there would be this immeasurable distance between Jude and I. That there was a difference that would come between us, a place where I could not reach. Over the last few weeks, I have come to understand that really this difference is part of all human connection. We are limited in how much we are able to understand each other. But I couldn't help but feel that the Down syndrome would make that distance just a bit greater. When I woke up this morning, I felt that perhaps this distance was not so great. That perhaps those cells of Jude that are floating about my own body now that I have carried her inside me have built up a bridge.

Sunday, May 12, 2013

Mother Gifts

This Mother's Day, I feel a lot of extra love to the women in my life who are the mothers who came before. My mom was with me through my early diagnosis with Jude. She came to Athens to first distract me, then sit me with through my amniocentesis and finally to be there when we got the news. I know she was scared but she was also unfailingly positive. She immediately bought books and threw herself into research. My grandmother reassured me that Jude would be welcomed into a family who would love her not matter what, and I know she was praying for us. My mother-in-law never even blinked an eye when we told her that Jude had Down syndrome, and two days later when she was holding Jude, she held her like she held all of our babies. She shared stories of people she knew with Down syndrome, and like my mom brought light into a situation some people would have brought mourning into. Each of these women have given me gifts of mothering, and I want to use today to honor those gifts as a way to say "Thank you for paving the path."

The Gift of Stories
When I reach back into the past, my memories can always conjure an image of my mother reading. She always had a book in hand whether we were hanging out in the living room or at the lake swimming. We always joked that once Mom was in a book you'd never be able to reach her. We'd chant "Mom, Mom, MOM, MOM, MOM!!!" And when she finally looked up, "What?" we'd all dissolve into laughter. Even now, my mom always has a "book" in hand...these days it's usually on her Ipad but she still gets lost in those worlds.

My teenage years were angsty which is a nice way to say rough. I look back over those years as a time when I seemed to have lost my mind a bit. The decisions I made were painfully poor and lead me into bad places. They were filled with chaos and self injury. The fact, I survived them still kind of floors me. My poor mom tried so hard to reach me, and to reach out to me, but I had walled myself away from her. I did not spend much time with family during those years. But I would sometimes curl up on my mom's bed while she read to Adam, my youngest brother. Even with the alienation I felt from them, I still remember feeling soothed as we all piled onto my mom's bad and listened to her read The Lion, The Witch and The Wardrobe. My mom always read to us, and she was an excellent reader. She could read a book and quickly captivate you with the story. When you're a teenager in pain sometimes the best way out is through escape, and I didn't always make the best choices in how I choose to escape but listening to my mom weave worlds was one of the best choices.

Today this gift is found in more ways than just reading books. I am convinced that my love of stories, narratives, and writing comes from my mother. This gift informs not just my writing here but my academic life because my mom taught me the importance of narratives. And when I read to the beasties, I remember those nights sprawled on my mom's bad soothed by far away fantasy worlds where evil took the tangible form of a Snow Queen defeated by a lion and four children.

The Gift of Magic

I don't know how old I was when my grandmother lived in the pink house. The house was a tiny ranch style across the road from the Kennebec River. I spent many nights there torturing my teenage aunts whom I adored, sleeping with my grandmother while she told me the "Ink spot" stories, helping her to make lunches in the little kitchen. My grandmother had the ability to turn everything into an incredible imaginary game. Washing my hair was a trip to the beauty parlor. Preparing lunch was working in a diner, and I got to be the waitress delivering the food. Bed time was spent preparing for the "Ink spot" stories where my grandmother created a wonderful tale of a tiny family, as small as ink spots, who went on incredible adventures.

One night during one my sleep overs, it snowed, heavily. I woke up snuggled against my grandmother to the deep silence that comes when the land is buried beneath a cold wet snow. My grandmother and I both got up quickly and went to the window to watch the snow fall in fat slow drops upon an already carpeted ground. Thoughts of breakfast were quickly erased with some intense snow playing plans. I was quickly bundled up in a snowsuit, hat, mittens and scarf. My grandmother had to put my boots as I couldn't bend over. I could barely walk. Once outside, I rolled around and fell into snow piles. I made snow balls, and a snow man. I played until I was exhausted and my face was red, chaffed from the cold wind.

My grandmother called to me from the door, "Gingy bring in some snow! I have a surprise!"

I quickly gathered up a big handful of snow and ran to her. She held out her black frying pan, and I dropped the snow into it. "Pack in there tight." she instructed. I patted the snow down as hard as I could. Then she ordered me to stand by the door while my aunts undressed me. I could smell the sweet heavy scent of maple syrup coming from the stove and I was eager to get to the kitchen to see what magic my grandmother was planning.

She pulled up a chair for me at the counter, and I quickly climbed up. Carefully taking a pan of boiling maple syrup off the burner, she walked over and handed me a spoon.

"Carefully get some syrup on the spoon and then drop it on the snow." she said.

I did as she instructed and watched the syrup harden into a hard piece of maple candy. Once again, my grandmother created magic from the ordinary. I think of that candy every time, I create with my children. That memory of how magic comes from the simple things is important when I go about the day to day with my beasties. Magic comes in the simplest of ways not always in the most elaborate of spectacles.

The Gift of Letting Go and Being There

Horacio and I got married pretty quickly. I was pregnant, and starting to get worried that H wouldn't be able to stay. Getting married was the easiest way to get us the visa we needed. And of course we were in love. But we needed to do this quickly so we planned a very simple ceremony. I bought a blue velvet dress from JC Penny. H invited his friend from Connecticut to stand with him. We found out his brother had a conference on the East Coast and would be able to come and see us after the wedding. But I was still sad that H's parents couldn't be there. I knew H wanted them there but with the short notice (we planned this all in about two weeks), it was unlikely they could attend. H didn't say anything but I knew he was a little bummed. He was very close to his family despite them all being scattered about the globe (sister in France, brother in California and parents in Mexico City).

Two days before the wedding, I got a call from H's dad. He had memorized enough English to tell me that his wife was flying into Portland tomorrow evening at 6pm. H, my roommates, and I were all running about making plans to pick her up, getting her a place to stay (she stayed in H's neglected dorm room), and just generally being excited to entertain this "foreign" visitor.

And poor Pilar arrived during one of the coldest times of the year. She embraced me like a daughter, this woman who was marrying her son and carrying her first grandchild, a woman who was a stranger and did not even speak her language. She cried quietly while he got married and held onto us warmly afterwards. She told me that I was her daughter. She suffered through a Maine blizzard, puzzled I think as to why anyone would live in this hostile environment. And she went home.

I often think how hard it must be for her to live so far away from her son and grandchildren. She visits us of course but it's not the same as having your child there. And it's not just H who lives away. Her daughter lives in France and for a while her other son lived in the US. One would think this distance would hurt her relationship with her children but it doesn't seem to. She is very close to her kids no matter how far away they might be. She calls us, video conferences with us, and visits (much to her grand children's delight as this means yummy Mexican food and tons of spoiling).

Pilar has shown me the hard gift of letting your children go. It is hard to imagine this sometimes but as my children get older and push me away a little bit each day, I am reminded that sometimes our children have to be cut free to live their own dreams. And no doubt that flying away is painful and a little heart breaking. But Pilar has let her children go with grace and love. She has opened her arms to free them but also to welcome them home.

Happy Mother's Day to you three ladies who have passed on gifts that inform my everyday mothering. I am grateful to you for giving me these lovely things to pass to the beasties. Thank you for loving me and loving them. 

Saturday, May 11, 2013

What Science Could Not Tell Me


 noun \ˈkrō-mə-ˌsōm, -ˌzōm\ any of the rod-shaped or threadlike DNA-containing structures of cellular organisms that are located in the nucleus of eukaryotes, are usually ring-shaped in prokaryotes (as bacteria), and contain all or most of the genes of the organism

Today, I got a rather unexpected Mother's Day present. Below is the road map of Jude. When this map was
spelled out, she was a fetus in my womb, and I was at home, crying myself to sleep because I was afraid of that third squiggly line over the number 21.

I find myself a little awed as I look at this road map. Awed in a way that I couldn't imagine when the Dr. first called me. This is Jude in her most basic mapping. Science is a wonderful thing. Because of science, my doctor was able to stick a giant needle into my belly, draw out some fluid, send it to a lab where they tested 50 cells and found in them the most secret aspects of Jude's being. 

Knowing that my baby carried an extra chromosome in the 21st trisomy, told me a great deal. I knew about the health risks. I knew she'd be intellectually disabled. She might not be able to hear or see as well as other people. I knew that she might never be independent. And I was filled with fear. I already had four children. Two have minor disabilities. I feared what having another child with disabilities would do to my family. Would we be crushed beneath the burden of care? That third haunted me for many months because ultimately with all that science could tell there was much science could not tell me. It could not answer these questions.

Now as I approach my 13th mother's day as a mom, I am thinking of how I'm going to frame this piece of this paper as a reminder that this a map not a narrative. A blueprint as opposed to a house. I am glad I got to see this almost five months into my journey with Jude. Now when I look at this stark black and white page, I am reminded that in a narrative there is more to tell. 

What this map could not tell me was that Jude would be beloved by us all. She would be her father's delight as were all his children. H would  show me a side to him that I did not know even after 13 years together.

I did not know that her eyes would be filled with that look of old wisdom that all my babies seemed to possess. That when she was born, they would lay her on my chest and she would be the first of my five children to look up at me right from the beginning. And in that look she placed her faith and trust in me. 

I did not know that she would like a clone of her sister Piper. That her nose would be a delicious nub of adorable. 

I should have guessed that she would have an interesting and complicated relationship with her sister, Rowena. This is a story that is only beginning to be told, and I am sure that it will be as filled with beauty and anger and frustration as is the story of Camille and Piper.

No test could have predicted that Piper would find in Jude that dangerous and beautiful love that shakes your world and changes your being. In Piper, Jude will always have a champion, a cheerleader, a friend.

Science could not tell me that when Jude smiled her whole face would transform into a flash of joy. That her laugh would be a hard bark of sound that makes us dissolve into giggles which in turns feeds her laughs. 

There is no test that could predict that Jude has already mastered the sardonic beastie gaze that just drips with incredulity. "You want me to smile? Right now? I don't think so."

I did not know that Jude would show determination so early. That I would come to admire her sheer will to do. 

And mostly I did not know that Jude would reveal things about me that forced me to change. Jude has brought out in me a fierce side but also a hopeful side. I am outraged but I am filled with courage, hope, and the light of a battle worth fighting. Because I had thought such horrible things and had changed so I know others can change as well. Really all I needed to know was that Jude was as human as the rest of us.

On this Mother Day's, I am blessed to have seen the earliest road maps to one of my children. It is a thing of amazement. But the greatest gift, is the gift of narrative. I have been privileged enough to be allowed to participate in the narratives of five amazing human beings. I have chronicled their joys, fears, and frustrations. I have documented the changes that have shaped me over the last 13 years. I have confessed my failings as I failed them. And just as often I have shared in the triumphs that come from those moments of understanding and connection.

What I did not know when I mourned over that map was that Jude would bring her own gifts and struggles to our lives. With Jude, I have learned that sometimes you can not linger on the future. She has made aware of how sometimes living in the present, in this moment be it beautiful, or filled with vomit, poop, seizures, constant hand washings, sly tantrums, screaming, scratching, fighting, is the only way to be. To be alive with the wild abandon that living a life with no limits allows.

Saturday, May 04, 2013

A Whole Girl In a Broken World

When I in college, I worked for a short time at a group home in our town. The overnight shift was a perfect fit because it wasn't too taxing and I was already working one job at the Women's Studies Center on campus. I could do my homework, and depending on who was on with me, even get some sleep. Our clients were adults with intellectual disabilities and most were nonverbal. I didn't see them much as they were usually in bed when I arrived. But I did get to know Pat. 

Pat was a forty-ish woman with Down syndrome and schizophrenia. She was the only person I had ever met who had Down syndrome. At first, I felt really uncomfortable around her. She would sit very close to me and stare at me. I have a really difficult time looking people in the eyes but she would get agitated when I didn't stare back. Eventually, I overcame my discomfort and started to like Pat.  I would paint her nails if she was up late while we watched TV. She liked to sit on the couch and hold my hand. 

When I met Pat, I was going through a rough time emotionally. I had fallen in love with the wrong person, again. And he had rejected me based on my looks, and had been upfront about it. I felt crushed all the time, like there was something sitting on my lungs and I couldn't catch my breath. I was unbearably lonely and felt unloved--worst I felt undeserving of love. Pat's hand holding became something of a soothing therapy for me. When Pat held my hand, I felt that maybe I did deserve love. I think from the outside it looked I was giving her something. I could calm her down and soothe her. I was able to bring back from the dangerous places in her mind. What others couldn't see was that she was doing the same for me. 

Pat was the first person I thought of when I was told Jude had a 1:5 chance of having Down syndrome. And I was scared. I had liked Pat just fine but I wasn't sure if I wanted a child like Pat. One day, after reading yet another "wonder story" about a kid with Down syndrome doing so much more than expected, I thought "Maybe Jude won't do any of those things. Maybe Jude will be like Pat." After I finally opened this discourse up, I asked myself "Will you still love Jude if this is the case?" The answer to that was pretty clear to me "Of course I would."

And I left it at that because what more was there? My child would come to me broken, like Pat, and I would love her no matter what. There was of course a chance ,a pretty big one, that she would be less broken. H hammered at this attitude. He asked if I saw my kids as broken and when I said of course not he pointed out that there were people who would see them in such a way because they were Hispanic. I resisted this and kept saying "But it's different." Jude was genetically broken in my mind. I imagined her as a jigsaw puzzle that made a baby but where you could still see the lines that made her not whole.

Last weekend, I was chatting with someone about Pat. She said to me "I think people can't get over that part of it. They love, care for, and truly appreciate various people with disabilities, but they don't RESPECT THEM." I'll admit I was a little touchy. I chaffed at the idea that I didn't respect people with disabilities.  I loved and care for my daughter. I had liked and cared for Pat but because I couldn't see the innate wholeness in them as they are, I wasn't really respecting them. If my whole goal was to fix them without appreciating the "perfect" human element in them as they were, I was missing a big part of their being.

Jude is not broken. She is whole and good and prefect. When I look at her I do not see the lines of a jigsaw puzzle that must be worried together so that when held in the right light the lines won't show. And by that extension Pat was not a broken person either. I don't know if she suffered. She didn't seem to suffer to me. She was a whole person worthy of respect and dignity. What I am coming to understand is that we all end up broken not because of the conditions of our bodies but because of the way the world (aka society) views those conditions. What is not whole is how we try to homogenize people based on an impossible model of "perfection."

Because here's the thing, you don't have to have Down syndrome to know this. You can be the poor fat kid in school like I was. The kid who tried so hard for a little while to fit in but never quite got it. Who always missed a step and exposed herself. People of color suffer in this country everyday. Young African-American men are killed because white people think they are gangsters or up to no good. Latino/as are pulled over again and again by the cops because the cops assume that all brown people are undocumented. Are these people broken? No but they are viewed as broken by a system that wants to fit us all into one mold.

And perhaps what we have to understand is that brokenness comes from being born into a world that is already broken from hate, war, disgust, greed.  Instead of focusing on  trying to fit everyone into a cookie cutter that looks like a white, middle class American person, we can focus on fixing this broken world. Instead of teaching our children how to be normal, we should teach them to love, really love in that hard, hard way that means being outraged, angry, and demanding.

The thing is that therapies and classes are not going to change the fact that Jude is different. And that's okay but difference does not equal bad, broken, or wrong. It just means different. When people tell me I need to do these things so that Jude will be like everyone else and not experience pain, I know better. There are awful people out there. They will make fun of Jude because she's different, and it's not going to matter how much she acts "normal." 

It's this simple to me: Our kids, Jude, the beasties, all of our kids, are not broken. The world is broken. I have a finite amount of energy. I can use it to pretend to fix Jude, or I can use it try to fix the world. I am sure I am aiming my lance at a windmill when I say this but I'd rather fight that windmill than fix something that is whole and perfect.

Perfect as is. 

Wednesday, May 01, 2013

What Activism Looks Like in My World: Feral Beasties

I kind of joke that my default mode is activism. When I found out Jude had Down syndrome, I read all the expected books but I also checked out a bunch of books on disability studies. I didn't know much about the world of disability but I suspected that there would be some fights ahead. I wanted to be prepared because I'm a fierce advocate for all my children.

And activism is kind of part of who I am. For me it started in college with the introduction to Women's Studies. One of my favorite professors was this incredibly gorgeous creative intelligent poet, Lee Sharkey. She gave me a voice for injustice which is an amazing gift to hand to someone. Under Lee, I read about fighters for women's rights, and it expanded into fights for gay rights, fat politics, racial inequality. I can close my eyes, and see her sitting in our circle, her hands swept out as she tendered our blossoming flames. There was so much anger in me when I began her classes, anger and brokenness. Activism, caring about the world channeled that anger into outrage and in trying to heal a broken world, started me on a journey to be able to honestly work on my own broken places.

When I meet H, I found a soul mate in activism. He fanned that fire started by Lee, and introduced me to some new fights. These banners I would take up in the name of my Latino/a children.

And for the last few years, I feel like I kind of stalled with the outrage. I was excited about OWS but I never really got into it like I would have when I was younger. I always had an excuse. I did some slacktivism for the Dreamers: passing on petitions, making some phone calls, fighting with people about the contributions of immigrants to this country, decrying how undocumented workers are treated. But honestly I always felt like I could do more. I felt stuck in this ennui that was kind of overtaking my life.

For the past five years, I had been totally immersed in the academy. I enjoyed what I did with a great passion, and I felt, honestly, that I was doing important work in both my writing and my teaching. In a way, I felt that it was a form of activism especially the teaching. I didn't reach all my students but I did reach a few. But when we moved to Athens that was gone.

Then came Jude. Initially I wasn't in my activism mode. I was in my freak the fuck out mode. But you know that ended pretty fast because Jude won me over. She does that to people. It was impossible for me to not be crazy mad in love with her. So when I read about Ethan Saylor? Well I knew that his mom was likely crazy mad in love with him and that she had lost her son. Senselessly lost her son over the price of  a movie ticket, and suddenly the crushing weight of the injustice of the world came down on me. This could be Jude. And as I read  more, from books to news reports, this injustice took a hold and shook awake that outrage. Because it's not just about Ethan Saylor or Jude. It's about the horrible injustices that happen all over the world to people who are different. And I knew that I had to fight this with all that I had for Jude, for Ethan, for all my children, for your children, for us.

But activism looks different than my college days. Because now I have five beasties to take care of while I'm fighting. I think they're all becoming a bit feral as I spend hours on the computer. This caught up with me the other day at a field trip I went on with my daughter's unschool. They were going on a wilderness adventure with a wonderful guide who runs a group called Wild Intelligence. It's an amazing program where children are let back into the woods. We meet her school at a piece of land called Earthsong. Throughout this wild adventure into the woods, my phone kept peeping. It was a big day as we just gotten off from a horrible teleconference with the major Ds orgs. There was a lot of messaging, a lot of commentary, and it was all coming to me via my phone in the wilderness. Even in the wild you can't escape technology.

As Piper ran wild, I was struggling behind her with Jude strapped to my chest in a carrier, R holding onto a strap and whining...I was also on my phone trying to type replies to the group. I'm sure the other moms thought I was gossiping. Little did they know I was coordinating twitter parties and press releases.

It's not easy managing a three year old and trying to type on a miniature phone pad. But I had to do it because damn it someone had killed Ethan Saylor and we need to make people sit up and pay attention. So I tumbled through the woods, tripping over roots, losing my phone a few times, and likely missing a few adorable moments with R.

My house is a wreck. The beasties are getting wilder. I'm afraid our homeschooling has been pathetic lately. Jude has gotten rather spoiled because I spend a lot of time typing while nursing. My grammar/spelling has never been the best but it's gotten a lot worst from typing while nursing. Jude is likely the only beastie who has benefited totally from my hastily typed blogs. My angry tweets. My small offerings to various groups.

I tell myself that it benefits her to have all this in arm time. After all, a hundred years ago, she might been put into an institution where she would have never been touched. Now she gets to be in my arms all day while I shoot off emails and tweets to people like Doug Gansler, GA of Maryland because I'm one angry mom and we might live in Maryland some day. I'm sure Gansler gets to do his work in an office free of children...and maybe I'd get more done but...

I wouldn't have this for inspiration...these beautiful, happy if a bit wild children who love their sister and deserve to live in a world that is safe for them all.

I've let them know what all this work is for and I've told them about Ethan. Not just about how he died but about how he lived. And sometimes, like at night, when they fight over who is going to hold Jude, I think that perhaps they aren't becoming so feral after all.

This post is part of a Blog Symposium brought to you by:

Down Syndrome Uprising