Wednesday, July 31, 2013

Hiding Under Tables and Pouncing on Mama

Ableism is so pervasive that it is difficult to identify until one begins to interrogate the governing assumptions of well-intentioned society. Within the space allowed by these rhetorical premises, ableism appears natural, necessary, and ultimately moral discrimination required for the normal functioning of civilization.--James L. Cherney 

Last night, we went to Barnes and Nobles. This, as those of you who know my family, is nothing new. We go to Barnes and Nobles nearly every week. Having children on the different age spectrum this is one of the few activities that appeals to everyone. Cafe treats and an endless supply of reading material means there's something for everyone. But last night Camille started whining after about an hour. She's in a weird place with her reading as she's finished The Warrior Cat series and I know she's struggling to find something to replace that big gap.

When Camille gets bored, she also gets anxious. And sometimes when she gets anxious she starts to engage in behaviors that are not seen as "natural," "necessary," or ""normal." Last night this happened. Camille started to run, jumping up on chairs and benches. We've talked before that one can't do that because of safety issues aka please don't plow down small children in your leaping upon benches. Once we settled that one shouldn't run through the store at top speed, she started to act like a cat. This involved hiding under tables, crawling around and peeking out from behind bookshelves.

She would pounce on me every once in awhile. And last night, I fucked up. You see for all my talk about ableism and for all the work I am making on rooting it out, I still fall into the rhetoric. I do this because it such a part of my thinking that it feels normal. And this is the problem with things like ableism. It feels like common sense. I should be teaching my daughter to act normal right? It's the best thing for her, right? I don't want her to embarrass herself, and, if I'm really honest, to embarrass us. 

When Umberto came over and told me that Camille was hiding out under a table in the main area of the store. I told him to go get her and I was feeling pretty annoyed with her. When she came back, she started to crawl around, hide behind book shelves, jump on to me with her hands like cat paws. And I? Well, I was irritated, snappy. I told her to she needed to act "Normal." That the way she was behaving was going to make people "annoyed." That sometimes in public that we needed to behave properly. I did, dear readers, I really did say all those things.

Camille pounced on me and I snapped at her. H looked over and said quietly "Ginger, she's just trying to connect to you." And whoosh it was like all the air went out of my indignation. My frustration with this behavior. I had to take a minute to think about where I was coming from.

The problem is not that deviance is bad, it is that ableism teaches seeing it that way. The problem is not that being abnormal is unnatural, it is that ableism teaches valuing normalcy that way. The problem is not that ability resides in the body, and that a body with different skills is inherently unable to function in society, it is that ableism teaches knowing ability that way. Confronting ableism as visual, ideological, and epistemic problems does not require us to set aside efforts to change the material order of society—such as working to provide access to public spaces—but it does empower disability literature, art, slogans, and protests as crucial to the effort to change what disability means. --James L. Cherney
What was happening in my head was that I wanted Camille to act "normal." I wanted her to be the kind of kid that people didn't raise their eyebrows at. It was reasonable to ask her to behave properly right? I wasn't asking for her to totally conform to just use manners. And it was all too easy to hear the voices of "others" in my head. "Oh my, why are those parents allowing their child to act like this?" "Get that child under control!" "You're being too permissible with her." "When I was a kid..." Those voices sometimes hammer at my confidence, I admit it. 

But I know it's ableism deep down. There is no reason why Camille can't hide under a damn table so long as she is not harming someone else. It might make some uptight adults uncomfortable but is it really a problem? Of course not. Camille's behavior might go against some social conventions but are those conventions really normal? Natural? If hiding out under a table, helps Camille to deal with her anxiety doesn't that make this behavior functional? What are we afraid of really? 

This has come up again and again. It came up when Camille wouldn't wear shoes. And then again when she would finally would wear shoes it was only Crocs without socks in January. We endured the looks, the comments that we weren't good parents. We came up against censure when Camille refused to wear a real winter coat aka the fat coats. We had to fight with the school about her only wearing a fleece and then one day I went on a field trip to find her forced into a winter coat. She refused to put her arms down and the teachers and aids were laughing at her. When I confronted them, insisted she be able to take the coat off, they whispered that I was spoiling her, indulging her. And there were times when I wondered if they were right. If I was wrong. If I was just going about this the wrong way. If I what really should be doing is helping her to be normal. Fixing her.

Most days I know the answer.
 Public demonstrations, countercultural performances, autobiography, transformative histories of disability and disabling practices, and critiques of ableist films and novels all apply rhetorical solutions to the problem. Identifying ableism as rhetoric and exploring its systems dynamic reveals how these corrective practices work. We can use such information to refine the successful techniques, reinvent those that fail, and realize new tactics. 
In many ways, allowing Camille to be herself is protesting an ableist society. I was doing this with her before I even knew the term ableist. I knew this because in many ways, I had felt the constraints of a society that demands normalcy and the pain of trying so hard to fit that role. I wondered if by allowing Camille to feel safe in her behaviors would build up her confidence. And now that she's ten, I think, we're seeing the results. She's confident, unashamed of her difference. I know it is not always easier for her because she does encounter people who look at her askance. But I think that by being allowed to challenge categories of normalcy she is finding that there is nothing wrong with her. And I am slowly learning to root out my roots of ableism. We are finding new ways to challenge the rhetoric and perhaps pretending to be cat in a public book store, pouncing on your mama when she least expects it is a counter cultural performance of protest.

Thursday, July 25, 2013

Love Unbroken

"The beginning of love is to let those we love be perfectly themselves, and not to twist them to fit our own image. Otherwise we love only the reflection of ourselves we find in them." Thomas Merton

I spent a lot of my life trying to turn myself into someone that other people would love. I am not sure when I began my life as chameleon but I think it was in those tender tween years. At some point, it was clear that I was a freak. My strange behavior was not winning me friends, and by the time I rolled into Jr. High, I was being outright mocked for my freaky self. At first, I just tried to lay low: bring a book to lunch, bury your face in it and hope the boys will satisfy themselves with calling you a pig instead of throwing food. I learned to walk with my head down, my hair falling like a mask, as the boys oinked at me while the girls snickered into their lockers.

And then for a brief moment, I decided to make myself stranger than I was already. I carefully spent an inordinate amount of time painting a rainbow on my eyelids with my mom's Mary Kay eyeshadow. One of my aunts laughed at me and that ended that experiment. Later I'd cut my hair super short except for a really long rat's tail that I dyed blue every morning with temporary hair dye. But those experiments were short lived at first. Instead I tried to mold myself to reflect someone that others would love.

What a dismal failure. I was always a step off, never quite what I was supposed to be. There was something about what I was doing that, never quite right, never polished, a detail off. I never managed to become what it was that others seemed to love. Instead I unintentionally parodied what made some people so popular.

You see through my journey to be loved, I learned that there is no essence to what we call ourselves. We are untethered in some ways but in other ways we are held to the localness of our bodies with slight strings. While we can break some, others still hold to those places we make home. And while I suffered a loneliness from not being able to slip those strings enough to become the most popular girl in high school, I also was given a gift in learning that by wearing many masks, I could somehow become myself. If people were going to stare, I would make them stare and thus entered a playful dangerous place of appearance. I shaved my head a few times. I pierced myself. I wore clothes that were strange and sometimes exotic. I played with being ugly and discovered that sometimes there is a fragile beauty to ugliness.

But I still didn't find the love that I craved. I still found people who wanted to change me, and being who I was it was easy for them to shape  me. But of course I always misstepped and was pushed aside. At least until I meet H, and I suspect he too had played this game of becoming. He loved me for the fucked up beautiful mess I was when we met. H and I have traveled together nearly 14 years now, and we have learned that you love the person in front of you for their reflection of their becoming not because they reflect your own becoming.

And that is how I want to love my beasties, and it is how I want to love Jude. When I say Jude is perfect as is, I mean that she is also perfect in her becoming which is not my becoming. I learned this with Umberto who did not learn to read until later. He did not become a child prodigy. He was not the child I had imagined two academics would have. And I admit that for a time I struggled because he was not reflecting back to me my own desires and wishes. Through time, I learned to love better the person he becomes (he is like us all an "and" over and over). It is a stronger love because it is not a reflection in a distorted mirror.

I don't say that I don't want to change Jude. Change is something that happens.She is only 7 months old and there is no pinning down of who she will become. That is something that will change with each year, each encounter. But I do know that I don't want her to become a reflection of a world that does not value her. I do not wish to make her normal, or to impart upon her a wish to make herself comply. There is no desire in me to see her twist her psyche into cruel distortions so that she can parody the people who demand conformity.

The quote is my inspiration. My love is not perfect, and I suspect I'd have to become a saint in order for it to be that kind of love. But that is okay. I, in my imperfect way, strive for this. May my love be an open book upon which the beasties will write their own stories not a mere shadow of mine.

Wednesday, July 24, 2013

What Makes One Who They Are?

When Umberto had his first seizure, we had a bit of wait until we had to make the decision about medication. At the time, the protocol was to wait until there was a second "incident" before starting one on treatment. So even though Umberto had shown seizure activity on his EEG, we settled in for a wait. During that time, I eased and worsened my anxiety by researching the medications used as anticonvulsants. The most common drug was Depakene and the side effects terrified me because many of them were things that would change one's personality. Depression, aggressiveness, hostility, irritability. Looking at my sweet, good-natured son as he played with his sisters, built beautiful things with his Legos, leaned against me as I read to him, it was difficult to comprehend him becoming a different person. I began to wish for no more seizures not just for the sake of him not having them but so that I wouldn't be forced to have decide if it was worth risking the son I knew to stop his seizures.

Then Umberto had his second seizure. We were much calmer this time around during the event but inside I was a mess. Now was the moment of truth. Of course his neurologist prescribed Depakene right away. I was frustrated and insisted on a visit with the Dr. before we began medication. After much calling I find got an appointment and I began to do even more research, to reach out on forums. I was determined to try anything but Depakene especially after a friend told me her son almost went into liver failure on it. I hit upon Zonegran which didn't come without it's own list of horrible side effects. However those on it reported less of a personality shift. Our neurologist agreed to try it, and for the next two years it worked for the most part.

And then after a 48 hour ambulatory EEG, we discovered that Umberto was still having seizure activity and it was recommended that we switch to Depakene. And what could I do? My son was still having seizures. He was nearing the age when driving would be a big deal. His concentration could be effected as he was still having absence seizures. And research was showing that epilepsy left uncontrolled could lead to long lasting effects and even death. When faced with the choice, I felt that I had to risk changing my son in order to make him healthy. But if I am utterly honest it was also to help learn with a bit more ease. I had seen how hard learning was for my brother who had undiagnosed absence seizures (he was diagnosed as an adult) and that difficulty has sadly colored much of his life. If I could give Umberto that bit of an edge, I felt it would be irresponsible not to.

Two years in and while Umberto has changed I don't know how much can be attributed to him being 13, and how much can be laid at the foot of his medication. He doesn't have many visually noticeable seizures and his concentration has gotten better. But sometimes I wonder who he would be if the drugs were not a factor. But I can't know. It's an endless road to wander upon and most nights I'm too busy with other thoughts to run along that trail.

Now I find myself pondering a phantom. You see, researchers have figured out how to "shut down" the extra chromosome found in the 21st Trisomy.  The community is a buzz with speculation. There are those who feel that this could give people with Ds a cognitive edge and that we should jump on that with all that we have. There are others who fear that eventually there will a be a "cure" for Down syndrome and they don't want this. It's incredibly messy and complicated. There are so many emotions involved, and it's hard to dismiss any one families opinion because our experiences are often so different. I have been very quiet about this as I struggled to sort through my feelings, and even now I feel like this is a rather dull, wandering post because I am confused and conflicted.

For me Jude is quite perfect as is. I have no clue what her IQ will be as she grows older, and I'll be frank that it's not something I worry about. I am all to aware of the problems with IQ tests, and with Western values of knowledge. But if I am quite honest, I do have an inkling that this will be a battle for us. I live after all in a society that places great value on very limited definitions of what constitutes intelligence. Sometimes I worry that my children will resent the unschooling. That they will resent our struggle to show them different ways of thinking and being in the world. Of course I worry that if a gene therapy came out that could some up Jude's cognitive ability and that I don't jump on it that she will feel resentful as she grows older. It's one thing to say "Well I'll let her make her decision when she's and adult" and then to have to wonder if it will be too late for her when that time comes.

Right now I don't feel like Jude needs to be cured from anything. She is not sick. She does not have a disease. If this research could be used to help with physical health issues, I am very excited about it. I would not refuse a chance to cure Alzheimer's disease or to have a better way to treat thyroid disorders. But it's easy to say "I'd treat the physical stuff." It's the other stuff that becomes more complicated, I think. And even though I faced a somewhat similar dilemma with Umberto it was different in that Umberto has a physical medical problem that needed to be treated. His cognitive issues were corrected as part and partial of the physical seizures.

I don't have any easy answers, and this post is one of the many that I have half thought out as I try to sort through all the complicated issues that arise when faced with this kind of science. I hope, dear readers, that you bear with me and stick out the journey. These conversations are hard but I think ultimately worth inspecting.

Tuesday, July 23, 2013

(3) on the 21st

One Truth: What's so wonderful about Jude is what's so wonderful about my other beasties. I spent a lot of time while pregnant thinking about how Jude would be different from the rest of us. Now that she's here, she's clearly just one of the beasties. Yes, she is her unique self as all my other kids are their unique selves. Jude will her own set of challenges but that that is not unique to her or to people with Ds. Most of us do not sail through life with nary a worry. My hope for her is the same hope I have all my beasties: may we raise them to be strong enough to fight the power.

One Tip: Work with your children and not against them. This is not a caveat to just allowing everyone to run amok and it's not nearly as easy as it sounds. I am hardly a paragon of patience, and often I literally step outside my door and scream in frustration. But when I am able to see my children as having equally valid ways of being in the world, I am able to reassess different ways of seeing things. My way is not always right simply based on me being an adult. And because I can compromise with my kids, they are starting to learn to compromise with me.

One Photo:
Jude was born TO rebel. Well at least she'll be raised to:)

This is a blog hop. Check out the other entries!

Wednesday, July 17, 2013

6 Months

As I celebrated my daughter's seven months on this plane of existence, I was also grieving for a life lost too soon. A life lost to violence, to greed, to impatience, to a profound lack of compassion, to a fear of difference. The report of what happened to Robert Ethan Saylor has been released, and it's every bit as horrific as I imagined it would be. Yet it's being spun by the sheriff department as a clear case of TRESPASSING, and for some reason it seems perfectly reasonable for this department to okay a killing over that dubious crime.

Those of you who read my blog know that my political alliances lie to the far left, and I make no apologies for that. I am of the opinion that capitalism has inflicted some of the greatest abuses on our world from the slave trade to the death of factory workers in India. We are under the thumb of money and consumerism at all costs. And I fully believe here that we have a smaller example of this kind of abuse.  You see Ethan wanted to see the movie again. That's it. He wasn't trying to hurt anyone (in fact almost the reports from witnesses say that he was swearing but he was not TOUCHING anyone...only one person said he resisted the officers who were touching him and I'm kind of like "Well duh" on that one). He wanted to see a movie. A movie that likely cost what $12? His aid tried to talk to the manager. She tried to talk to the police.She told them all that if they just waited it out Ethan would be okay and leave. But you see no one wanted to do this. No one was willing to pay for that movie ticket. Ethan's mom reports that Ethan's cell phones records show that he was trying to get in touch with her to get money to see the movie again. Sadly no one waited, and instead a young man is now dead because he had the audacity to sit in an empty movie theater. He died over $12.

There are many ways this could have turned out for the better but none of those things happened. Instead, the Frederick's Sheriff Department blamed Down syndrome. Yes, you're reading that right. They said Down syndrome killed Ethan Saylor. Not three OFF DUTY deputies who were clearly impatient and/or on a power trip...nope not them but Down syndrome. It's ridiculous isn't it? But there it is. This isn't about training folks. It's about bias. It's about discrimination. It's about not getting justice because someone thought it was easier to blame Ethan's disability. That my friends is bullshit. And it's time to raise an outcry. A really big one. Because even if you're life has not been touched by someone with Down syndrome, I know my readers value justice and equality. That most of you despise this system as much as I do. It's time to broaden our reach. People with disabilities are a valuable part of world, and it's time we stand up for them too.

There's plenty to be done. Kimchi/Latkes has a great post up with an outline of places to go.

Emma, Ethan's wonderful sister, has a Facebook page you can go like to show support. That's here.

Write to Governor O' Malley in Baltimore asking for a independent investigation.

If you haven't liked Down syndrome Uprising, go ahead and do that as well (and yes I am on the "board"). We are not just fighting for Ethan over there, we're fighting for all people with Down syndrome.

Monday, July 15, 2013

When You Carry Your Difference On Your Skin

I am a white woman. My children are not white. They come in varying hues of brown and I suspect a couple of them could pass for "white" Hispanic (whatever the hell that term means). However  a couple of them have been signified at their tender age for the color of their skin. My son was told at five that "Mexicans carry guns in their pockets" and I suspect there was more because for at least two years, he refused his Latino half. My daughter was asked once what language she spoke by snotty girls. Clearly a brown girl wouldn't speak English. Later my son was told that "Mexicans are good with knifes." Of course I'm bothered at the comment aimed at my daughter but I am especially concerned with the implications of violence in the things said to my son.

My son will never likely experience the same level of prejudice as a young black man but I know that at least here in Georgia, he will certainly bear some of the weight of carrying your difference imprinted on your very skin. I know that I have already had to teach him to be careful with police. There was a day when I had to talk to him about how it wasn't okay to play with realistic looking guns at the park, and had to tell him why the white boys he was playing with likely didn't have to worry about that kind of thing. He has seen me awake while his dad is out at shows because I am worried about the police stopping my husband because he is brown. H has already had many talks with Umberto about what it means to carry your difference on your skin.

When Jude was a very small baby, people would say to me "She doesn't look like she has Down syndrome." It happened all the time. When she was first laid on my chest, I could see the physical markers of Down syndrome in the shape of her eyes, the placement of her tiny ears, the fat around her neck. People told me I saw it because I was looking for those signs. At first, those signs were all I could see. They were glaringly obvious to me every time I looked at her like a neon sign that was blinking "Your child has Down syndrome." After a couple of hours, I was able to just see Jude in all her beauty. But it's not like the signs just went away. They were still there. I still see them. I would be lying to say they don't. I've just learned to not make assumptions based on the slant of my daughter's eyes.

When people tell me that Jude does not look she has Down syndrome, I am always edgy because I feel like they mean it as a compliment. And I wonder why that would be something to get excited over. It would be like telling me that my son doesn't look Latino. And I remember  reading Passing by Nella Larsen in college. In the story, a young African American woman who is "light skinned" passes for white. She actively works at passing and marries a white racist man. It's a sad story, tragic and a telling commentary on the brutality of carrying difference in a visible way. I can't help but wonder if people think it would be better if Jude could pass for a nuerotypical person.

As Jude gets older, her difference is more noticeable. I hear less and less that she doesn't look like she has Down syndrome. I get the looks in the grocery story. I know those looks because I got them with all my kids. They are the looks that say "Your child is different even from you." People used to ask me if I adopted my own children. Now I can see other questions formulating. Questions like "What's wrong with her?" Or subtle hints perhaps to draw out if my child has a "condition." These are the times when difference is like a wound that festers and pains me. Because I do not know quite how to explain that yes my children are different but only in the differences that all our children have in their assertion away from us and towards the world.

The way that we attach signification to visible differences has dire consequences because those significations wash way the humanness of the person who stands before us. For Zimmerman, Trayvon Martin was a thug. He did not see what I see when I look at pictures of Trayvon. I see a young man on that bright beautiful cusp of adulthood. I taught many young men like him, and yes, I had to learn to think outside of my own racist fears and assumptions. I had to root out things I didn't even know existed inside me. I had to do it not just to be a better teacher but so I could be a better mother and wife. When those off duty deputies who cuffed Ethan Saylor and threw him on the floor, they did not see Ethan as a son, a brother, a friend. They someone who had a mental disability that they assumed would make him more of a threat. So they stomped that threat out and inadvertently stomped out his life. When deputies pepper sprayed and beat Antonio Martinez , who has Down syndrome, all they saw was a Hispanic male. They were looking for a Hispanic male who didn't even begin to match Martinez's physical appearance but they never got past his color.

When you carry your difference marked on your body, you are also forced to carry the significations of the society in which you life. I think it's time we start working on the change. Now, before more and more of our children die at the hands of those who are unable to see beyond the color of one's skins or the shape of one's eyes.

Thursday, July 11, 2013

A Year Ago Today, or Letting the Past Person You Were Deal With Her Shit

Last year, on the 11th , I spent the day in a fine state of anxiety. The Dr. who had performed my amniocentesis had said there was a possibility that the 11th might be the day they received my FISH results. I practiced being positive by telling my mom and H "Down syndrome is not a big deal. It's going to be okay." My inward reflections were a bit more complicated. I would go to the bathroom and cry quietly because I didn't want my mom or H to worry. At about noon, I started to relax because even while I did want to know, I also kind of didn't. There was a bit of peace in that in between land but if I was honest, it was peaceful because I would tell myself that Jude did not have Down syndrome.

The peace was shattered when the phone rang at 2:00. The results were in. Jude had Down syndrome. I  spent a lot of the day weepy. Not from sorrow or regret. I was scared. I didn't know much about Down syndrome. I cried from the fear. But I also cried because people reached out to me. Women on the pregnancy board at Baby Center told me it was going to be okay. My friends told me it was going to be okay. My husband and my mom told me it was going to be okay. The only one who worried it wasn't going to be okay seemed to be me. '

But what I did know was important. I knew that I wanted this little fetus growing in my belly as much as I had wanted all my other beasties. Love is a powerful thing. But sometimes even love's light doesn't chase the shadows away.

The real stuff happened in the coming months. The hard stuff. The good stuff. Because here's the thing. I wouldn't go back in time and tell the past Ginger anything. She had some shit she needed to work through you see. And yeah my bad ass future self feels a little bad for her tears and boohooing BUT...

Well let me haul out my favorite Audre Lorde quote: "I urge each one of us here to reach down into that deep place of knowledge inside herself and touch that terror and loathing of any difference that lives here. See whose face it wears. Then the personal as well as the political can begin to illuminate all our choices." I used to focus on the Master's tools part of the quote which I left out in this space because I realized how incredibly fucking important the remaining piece is to becoming a person of conscience, compassion, and action. You see the personal as political isn't about your warm fuzzy feelings, or about spilling your guts in a tell all memoir. Instead, it's something harder, something that requires work, and frankly, something that feels pretty damn awful while you're going through it. The personal only becomes political when you finish an examination of how you embody the power that oppresses you and others. When you root it out, acknowledge it, and turn into an impetus for change.

What happened is that for the next five months, I had to do this hard work. I had to face my own prejudice about people with intellectual disabilities. I'm not going to make any excuses for myself either. It doesn't matter that I didn't know anyone with Down syndrome. Not knowing people who are different in various ways is not an excuse for ignorance or intolerance. Nor does it matter that I was scared. I say this because I had to be frank with myself. I knew better, you see, because I have studied difference. I have lived with it in various ways. But there was still deep inside me a fear of a certain kind of difference. A fear that came from my own arrogance, my own insecurities. I who had placed so value on the academy was about to give birth to a child who challenged if that was even valuable. 

And trust me I believed some bad shit. I thought she was going to be hideous and thus had to root out all my bias on difference being beautiful.  Difference is beautiful I would come to see before I even laid eyes on my lovely daughter. People with Down syndrome are beautiful. Very. In fact, I think beauty is so much bigger than I ever allowed myself to see.

I thought people with Down syndrome were dull and uninterested in the world. I began to read about people with Down syndrome. They were clearly engaged and excited about the world. Many were artists. Some were activists. And most were just average people like me. Living life as it came at them. 

I thought that Jude would be a drain on her siblings. I worried that I would spend so much time "fixing" her that they would resent the lost time. I feared they would not want to take care of her when she was older. What I learned is that people who siblings with Down syndrome have more positive experiences than negative.

Maybe he loves me TOO much.

Somewhere along my dark journey to true love, I also learned that people with Down syndrome sometimes go to college. But by that point it no longer really mattered. Because what I had really learned through all this was that people with Down syndrome were different, yes, but different in the ways that we are all different. They were different from each other. Different from me. They were varied, individual with different interests, passions, lives. The only one common experience they seemed to share was that a lot of people didn't see them as being fully human. People like me. And then I shed some tears about my own small cruelty found in ignorance. But after those tears I pulled on my big girl panties. Because seriously? You don't want to fuck with my beasties. And there's a fight to be had here and now for Jude and for people like Jude. Human people. Real people. People who deserve equal care, equal rights, and the opportunity to live a full, varied life. 

The personal became the political before I even held Jude's tiny body in my arms. And that is how I became a better person. Not through Jude but because I wanted to be a better person FOR Jude. FOR my other beasties. FOR the world. So no I wouldn't go back and give the past Ginger any tips. She clearly had some shit to work through.

Jude says "Rock on with the outrage."

Wednesday, July 03, 2013


July of last year I could have been having a baby instead of finding that the baby I carried had Tri. 21. In October of 2011, I had tested and found to my great joy that I was pregnant. You see, I had wanted, felt intensely that we should have one more child after R. When I found out that was I finally expecting a baby, I was nothing but overjoyed. For a week, I felt like I was floating through life. There were names to debate with H (I was sure this baby was a boy). Day dreams about a baby to nurse and snuggle. Another life to bring into the beastie fold.

And then just as suddenly as it had happened, it was over.

All my plans mocked me. The tiny baby clothes I had started to slip out of storage lay abandoned. I could not bear to see them. Each day getting out of bed felt like the biggest chore. I slugged through meal making and child care. I gave the barest minimum and spent most of my days lying in bed sobbing as I nursed R. I wanted to be over the sadness. I told myself "Good god, woman, you were only a few weeks along. Snap out of it." My pain was a barrier that kept me from everyone, and I already felt horribly isolated here in Athens.

Finally there was a day when I didn't cry. And slowly, I walked out of the fog and back into life. The sadness was still there, and the mourning I suspect will never leave. A friend encourage me to name the baby, and even though I felt I didn't deserve this act, I did. It helped. The baby had a name, and I could carry him with me. I packed away the baby clothes.

One day, I realized we weren't going to have another baby, and I began to make plans to get rid of the clothes. I sobbed the day I sorted through them. But I felt like I was only wanting a baby because I felt loss in life. I wasn't sure what my future plans would be. I felt kind of aimless. Having a baby would give me something to do. A purpose. Or so I thought. That was a shitty reason to have a baby.

And then I found out I was pregnant. Again. I must have took a dozen tests over a two week period. Over time, I began to hope just a little that this one would stick. I never let go of the fear though. Every morning, my first thought was "Is the baby still there?" Every twinge, every odd feeling lead to hours of worry, Google searches, and lots of anxiety. But despite myself I began to dream for this baby. I started to pull out the little sleepers, and make wish lists on Amazon. Eventually we started to choose names. Phoebe for a girl. Leon (Leo) for a boy.

Then I got the call that put a minor road bump in all those dreams. What I don't often tell people about that call was that our risk for Tri 18 was also high, and it was ultimately why we decided to get the amino. We were fairly sure we'd terminate for that disorder although not for Tri. 21. I can't tell you how hard this time was between that call and the long weeks until the amino. I had finally allowed myself to open up to the joy of this baby and now I was facing losing he/she. I cried a lot during those long hot summer days even as I tried to bury myself in things to make me forget. But it was impossible to ignore those first small stirrings. The starting swell to my belly.

At some point, the stirrings stopped or at least I couldn't feel them. I convinced myself that the baby was dead. It was even more horrible than the first time. I cried and cried. I no longer cared if this baby had a trisomy. I just wanted the baby to be alive. All that matter was that she was alive. I started to hope she had Down syndrome because that was the surest condition to guarantee her life. But deep down I felt like she was already dead. I just knew that when they ran that wand over my belly there would be no movement, no heartbeat.

So of course I started making deals with the supernatural.

When they ran the wand over my belly, and I saw that baby (a girl they said) rolling around, kicking her little feet, waving her arms about, I started to sob. The tech was pretty disgusted but I didn't care. Jude was alive. That was the shift for me. Jude being alive was by far more important than an extra chromosome. It was the beginning of a thought journey that would eventually lead to where I am now. Jude was alive, you see, and that meant day dreams, amazon wish lists, and little kicks to keep me awake at night. While I still had a way to go in my acceptance that she was going to be just fucking fine, I was beginning because I had lost once before. The pain of that lost, the absence of that presence will always be with me. The thought of there being two such losses was unbearable. I could live with an extra chromosome, and while I could of course live with the pain of two losses, I knew which scenario I'd prefer.

You see Jude is special to me not because of her extra bit. She's special because she's here. In my arms, in our family. When I say she's just another beastie that's what I mean. She is another being to add to this wonderful family. Our last child. Our full circle. She made it, and I don't give a shit what she brought along with her. It doesn't change any of the dreams I had while gestating her. She will of course not follow my dreams. She'll follow her own just like the other beasties. But it doesn't matter. The dreams are just ways of opening up for the presence of another in our lives.

Monday, July 01, 2013

Decayed Places, Artists, and Strangers

Yesterday we spent a couple of hours exploring an art collective called The Goat Farm. Housed in an abandoned warehouse, there were lots of secret beautiful  places that one can only find in decay. We drag our kids to places like this all the time, and they tag along for the most part, willingly. Camille though seems as drawn to these places as we are. Now that she has her Itouch she has begun to take pictures as well (I'll post some later when she can bear to be parted with her music).

Camille's world is not unopen to us at this point in our journey. We have over the years, she and I, come to bridge what I thought was an unknowable gap between us. The layers of frustration that so often lead to conflict are there but not as much as they used to be. There are less tears, less yelling, less apologies that left us both still feeling like our hearts were broken. While I don't always fully understand Camille's world, it's okay because she doesn't really fully understand mine either. 

At some point in my struggles with Camille, I was exhausted. I came to a point where I had to recenter back to my basic philosophy of parenting. A, make sure they are good people. B, don't work against them but with them. This is what I slowly began to do with Camille. I started to allow her to be who she was without compromising the family or her own being. It meant not pushing her to befriend all the kids at the park, and being okay with her sometimes retreating to the van to read. It meant not fretting over how she interacted with others, figuring out that sometimes a socially unacceptable behavior that wasn't hurting anyone was okay to let slide. I had to let go of my own insecurities and my own pain that has followed me. Pain that came from being different. 

Something amazing happened when I decided to stop fighting against who Camille was becoming. We began to have a relationship. A real one. And as I let her be more of herself, it opened up a way for her to become more a part of this shaping process. She became more responsive to what I had to offer. Instead of belligerently rejecting my advice on how certain tones could be rude, or how a self soothing behavior might not be polite, she began to listen to me. Things are by no means perfect as we are two human beings who will naturally rub each other the wrong way. We are also both stubborn, bitchy, outspoken, and arrogant. It has always amused me that our conflict arises as much from our similarities as our from our differences.

Lately it is not unusual for Camille to lean against me with her arms around me. We have not always had this closeness. As she develops into a woman, we are finally able to touch each other in a way that is filled with the quiet comfort of familiarity.

But more importantly, I realize that people have begun to read how we interact with Camille and it seems they are taking a cue from us. I have always heard people say this, and honestly, I scoffed. Mostly because it doesn't seem to happen that way but in the times it does happen it is striking and affirming. At the Goat Farm yesterday, as we explored the ruins of manufacturing, we finally found some goats (after all the place is called "The Goat Farm."). They were tied a a lead connected to the railings of stairs leading to a huge porch. There appeared to be some kind of yard sale going on and as we approached a young woman invited us to pet the goats. While the kids played with the goats, I started to ask the woman about the collective. As she described the studios and the artists, I noticed Camille sidling up to us. During a pause in the conversation, she announced "I'm an artist." She didn't quite look at the woman talking to us which is how she normally approaches conversations with strangers. She wants to talk but she can't quite bear the intensity of that contact.

She then launched into a rather one sided conversation about her art. She talked about her drawings, her style, her writing. She mentioned that she would like to do pottery and she was interested in making movies (who knew?). The young woman initially acted a little uncomfortable but very quickly relaxed into the rhythm of Camille's talk. I gently asked Camille quick questions to stir her to other places, and reminded with a touch to listen to what the woman was saying to her. But I didn't try to shape Camille's conversation or her move away or rush along as I might have a few years ago. And the young woman began to relax even more and talk to Camille the same way. It was clear she was taking from me a cue as to how to interact with Camille.

Mothering Camille has shown me that while we are guides to our children, we are not the sole creators of their beings. Who they become is a complex collage of biology, family, culture, etc. They, like us, are constantly becoming and we can run with them or against them. I'm choosing to run with Camille. Our paths are after all merging together for this stage of her life, and I'd rather be with her so that when her path veers from mine perhaps a bit of our journey will go with her.