The Power of Being Wanted

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

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

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

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

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

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

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

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

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

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

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

Another Trip Around The Sun

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

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

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

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

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

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

The Difference In a Traffic Stop

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

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

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

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

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

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

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

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

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

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

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

Camille, Flying

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

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

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

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

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

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

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

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

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

 

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

https://www.facebook.com/ParentingAutisticChildrenWithLoveAcceptance
https://www.facebook.com/AutismWomensNetwork
https://www.facebook.com/boycottautismspeaksnow

Never Alone

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

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

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

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

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

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

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

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

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

Holding You In My Arms

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

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

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

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

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

"Would you terminate?"

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

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

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

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

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

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

Proving Worth

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

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

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

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

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

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

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

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

Not a Pretty Girl, Part I

I meet him at a Yule party I attended with a friend. We flirted a bit, and he kissed me with the help of a clove studded orange (a supposed old Yule tradition where you had to kiss the person who handed you an orange filled with cloves). I didn't think much of him after the kiss. He was fairly attractive but there was something to the cold indifference he exhibited that was a turn off. I was not confident in myself but not so insecure as I had been when I was younger. I didn't see him again until a month later we both attended a Twin Peaks marathon party. Neither of us were interested in watching T.V, and we went to another room to talk. We had similar taste in books and music and come to find out in sexual proclivities so I went home with him. The next morning as I was getting dressed, needing to get to my friend's house so I could make the Greyhound back home, he said "I just want you to know this was a one night thing. I don't want you to get any ideas that it meant anything more." And I paused in buttoning up my oxford shirt. I felt the color flush to my face in a hot rush of shame. I should have been angry but instead I was pushed back into the space of the not pretty girl. The girl who was good enough for a quick fuck but not for an actual relationship. Not good enough to be the public eye candy that hung on a man's arm. As I walked back to my friend's house, I carried the sting of a rejection I didn't even care about. I had zero interest in dating the man I had just a rather blah sexual experience with but I still felt the old slut shame creeping up on me. Once again, I chastised myself, you have jumped into bed with some guy. What's wrong with you? He thinks you're gross.

When I got back home after that weekend, I went on another diet. I was already smaller than I had been for the last five years but a little voice whispered "It isn't enough." I spent hours examining myself in the mirror. I thought about growing my hair back on the sides, dying it something a little less out there than my usual midnight black. I remember a guy friend once accusing me that I was purposefully making myself ugly. The stinging words of the guys I lived with hung between my reflection and my eyes. Lester. From the Adam's family. I didn't even warrant Wednesday. Instead I was the ugly bald male uncle. Not even female to their eyes. An ugly figure made to be mocked. Someone to be fucked in the hidden darkness of night, or in the vapors of a drunk urge. Nothing more.

During the awesome Twitter storm with the tag #yesallwomen these feelings, that moment, came back. A woman had written a tweet that said "I don't know of any women who hasn't been raped, abused or sexually harassed" and some man wrote back "You must not know any fat girls." This time though there was no shame. Just anger. Throughout this whole conversation which is so vital I have found little challenging the ideas of beauty. There are a lot of tweets from pretty girls about being harassed at bars, work, etc. Being told they weren't smart because they were pretty. My experience has been very different.

People don't believe that I have been raped and sexually harassed. I was raped when I was fifteen at a friend's camper. We were drinking with some older guys, and I was very drunk. At some point one of the equally drunk guys began to grope me and I feebly said "No" and tried to push him off. It didnt' work and at some point I just gave up, moved to some part of my brain that could be separated from my body (it was something that I as a fat girl was used to doing for a variety of reasons). When I tried to tell my friend what happened a few days later, she refused to believe that the guy would even want to have sex with me. I was too ugly for that after all. The guy didn't acknowledge my existence when I saw him in the days that followed. I learned then that I was too ugly to say no. The expectation was that I should be gratefully for every sexual advance made toward me, and for the next three years, I lived my life with that idea firmly planted in my mind. Meanwhile furthering the label "slut" that was hurled at me in the grimy hallways of school. Little did most of these people know that I didn't want to have sex with 98% of the men I had sex with; I just didn't feel like I deserved to say "No."

I didn't get hit on at work. I was never sexually harassed on the job. I never had students hit on me, or ask me on dates. At least in public. Those things happened in hidden places away from the eyes of others. I never dared to tell people because I was afraid the reaction would be that of my friend "Who would want to hit on you?" So I endured just as the pretty woman endured because I was afraid that I wouldn't be believed. But my feeling came from the fact that there was something wrong with me. No one would believe me because I wasn't pretty enough to be sexually harassed.

I do not write this as an attack on pretty girls. They suffer in a society that has very rigid standards of beauty. I write this as a way to began to shift the conversation to a closer look at our narrow standards of beauty. Women like me are often dismissed from the conversation because society deems us not sexually worthy and thus not "real" victims of sexual abuses. I wonder how many girls like me suffered sexual abuse in silence feeling that we didn't even deserve to be victims.

Mothering, a Verb

I became a mother (noun) almost fourteen years ago. One minute, I felt like I was feeling faint with the exhaustion of trying to push this tiny alien being from my body, and the next minute, they were placing a tiny burrito wrapped human into my arms, and saying "Congratulations Ms. Stickney you're a mom." And it was pretty surreal and over-whelming. The suddenness of becoming this thing, this mother, this person responsible for this tiny rather homely creature left me almost shocked. The early pictures show a woman with a scared wild look to her eyes as if she might be about to jump and run for the nearest exit. But he won me over pretty quickly. My love was undeniable. Passionate and fierce. Love, however, is not enough to care for a tiny newborn. There are other things like fortitude, patience, persistence, the ability to run on five hours of interrupted sleep.

Mothering, verb,  does not come to one just because they are a mother. And some times mothering, a verb, comes and goes. I was not good at mothering when my beastie boy was wee. I have many regrets, and sometimes I still am stricken with guilt at how I behaved towards him. I never stopped loving him but sometimes the acts of being a mother got caught up in my own immaturity and selfishness. Sometimes I just had had enough and didn't have the help or resources to ask for help or to know what to do. Poor boy was the first and the test drive so to speak. And I am not saying this to heave more guilty upon myself. I am human thus broken, thus imperfect. I am not saying this to suggest that a mother should subside their identity into that of their child. I don't think a child deserves a perfect life anymore than they deserve an abusive life. There is pain in that attempt to hit perfect for all involved. Rather I am saying, that for me, mothering was something that came with practice. It was something that while it grew through my acts of parenting also grew as I became more knowledgeable, more compassionate, more attuned to the divine (whatever you may call it). Mothering is a constant evolving manifestation.

In the darkest moments after my diagnosis with Jude, I was scared that I would not be the mother she deserved. I had read the many blogs about the super moms who had children with disabilities. They were frankly intimidating. They spoke of isolation, hardship, and the patience to endure. Patience is not something I have in abundance. I am terrified of being isolated. I didn't want to suffer, and I am no good as a martyr. Everyone around me seemed confident in my ability to mother Jude but I didn't have faith. I laid in misery thinking about all the horrible things I had thought about Down syndrome. I feared selfish awful things that bring me great shame to recall. Clearly, I thought, as another awful thought boiled to the surface, I am NOT the person to raise this tiny life. I don't want this burden, I'd moan, to God.

And then one day when things were quite dark, and I had cried for hours, I read something about bringing our  brokenness to God. I laid it out there; lining up the pieces. And I realized that it didn't matter. That Divine love doesn't care about how broken we are. Or maybe that this love is there because we are broken. There is no despite. Our perfect is not what is desired. Mothering is about loving not despite of but because of. I don't love stop loving my children when they are screaming at me, or breaking my things, or giving voice to things that I find dreadful. So it is with the Divine. My brokenness, my mistakes, failings, sinfulness, crud, is not a deterrent to love. Rather it is in the face of those things that I am the most human. The most able to learn, to reach someplace new, different.

What it came down to is that there was no one better to mother Jude. She was my gift. My last child. After 13 years of giving birth, nursing, changing diapers, wiping noises, cleaning up puke, holding a child who is seizing on the floor, dealing with blows, things thrown at me, I had come full circle to Jude. Mothering Jude would likely entail some new learning moments (like realizing my own Ableism) but parenting ALL of my children was a hilarious mixture of  new learning moments. I had messed up often with the beasties who came before, and I would mess up with Jude. And it would all be okay because I would keep muddling forward in this act of mothering--this breathtaking venture of raising up other humans to go into the world.

This morning, I sat down to brunch, surrounded by the people who center my universe. I am a different person than I was when they thrust that tiny bundle into my hands. When they handed me Jude, I was reminded to that first moment when they placed my son in my arms. But I was not afraid. Not stunned. I thought "Well I've got most of this covered, and I'll learn the rest." I remember how when the sun came up as I nursed her and took some time to fall in love, that this was not a burden.  I remember at times feeling like mothering was a great burden, and I remember how I felt this would be surely the case with Jude. Please let this burden pass from me God. But it mothering is not a crucifixion. It is not the bearing of the world on your chest. Instead it's a gift to us all. Or perhaps it should be a gift. Mothering is not the same as a being a mother. Mothering is an action that anyone can participate in. It's a push, a reminder to guide to be compassionate, to love, to hold out a hand to the fallen, to feed the hungry. We give this gift to not just our biological children but to our adoptive children be they small or grown. We give it to the homeless guy on the street when we hand him fruit. We do it when we hold a friend who is weak and hurting. We give it every time we remember that we love because of the brokenness not despite of the brokenness. And most importantly we must remember to mother ourselves. To push ourselves to better thoughts, to higher places, but also to love ourselves when we sometimes fall.

The Trouble With Food

The trouble with food, I've often explained to people around me, is that as an addition it's awfully hard to kick. I can't go cold turkey because I need to eat. And while yes I could give up all the sugar, fat, fried goodies, it ultimately doesn't matter as I can binge on Vegetarian Shepherd's Pie. There are no restrictions on my addiction, like most junkies, if I can't get the best fix, I'll amble on over to the next best.

I eat for a variety of reasons. I'm depressed, bored, happy, hungry. Insert emotion and there is a food. Food is always a part of the celebratory aspect of any holiday. I bake cookies. I create casseroles loaded with cheese and eggs. We eat our way through Christmas morning, Thanksgiving Day, and Easter. I don't know how to create a holiday that doesn't include copious amounts of goodies. My Pinterest board is a testament to this fact. I also really do love food. I love new flavors and trying different cuisines. I love to create in the kitchen taking the raw ingredients and making something nearly magical with them. Cooking is a way that I show that I care, that I love the person for whom I prepare the food. But food is also a drug for me, and it is in the intersection of these two experiences of food that I lose my way.

Over the last few years, I feel like I've been caught in a whirlwind of changes. My expectations and plans for my life have been swept up and transported somewhere else. I don't do well when the careful to do list on which I've worked so diligently is snatched out from under me. So I've sat here in Athens for just about three years, and ate my way through the many emotions I've felt.

This was a trend that began in Charlotte. When I was rejected from every graduate school I applied too (even the safety ones) the consumption began. I ate until I was uncomfortably full at first, and then I began to eat past that point. I'd lay awake at night sick with food I had barely tasted. If I didn't overeat during the day, I'd creep out into the kitchen in the early  morning hours to quietly indulge while standing in the dark at the kitchen encounter. One the rare occasion when H found me, the shame rode me. I blushed in the darkness but I didn't stop eating. By the time we moved to Athens, I was already spiraling deeper into my food addiction. Deeper than I had been for along time.

And once in Athens, set loose from scheduled work, due dates, and lesson plans, I felt helpless and useless. I floated on an ocean of too much time, and I ate my way through the fear, the anxiety, the depression.

Now I'm starting to see a way out, and I'm trying to swim but I'm loaded down with the addition that just doesn't go away when it's out lived its usefulness.

Two weeks ago, I made cinnamon rolls. I felt safe in making them as the beasties are crazy about cinnamon rolls. I was wrong. It wasn't safe. No one liked them but me. They sat there in their creamy frosting glory. I ate one after dinner feeling safe and slightly virtuous even though it annoyed me to feel this way. Food isn't dangerous. It isn't moral. It's not good or evil. I repeated these things to myself as I ate half a roll. I felt full but it wasn't unpleasant. I went for a walk with the little beasties and H. When we returned, I ate the other half. Throughout the night, I couldn't keep away. I should have thrown them out. I should have frozen them. I didn't do those things. Instead I ate them.  I ate several. And by midnight I was nearly writhing in pain. I ate them when I could feel the gluten rising up in my chest. I ate them when it was clear that my tricky gall bladder was going to kick my ass. And then I ended up in the ER. I sat there shamed thinking about how I had eaten myself into this place. There was no rehab to check me into, only the quiet disdain of the Dr. who lectured me on my bad eating habits. Like I didn't know hatt one shouldn't eat ten cinnamon buns in one evening. Not that I told him this thing. He made that assumption looking at my fat body.

I've learned my lesson, I thought as H drove me home at six am. I have to get control of my eating. And for a couple of weeks I did okay. But then last night, I ate cupcake after cupcake. I inhaled chips. I asked Piper to bring me a cupcake as soon as H went to bed because I was ashamed that I was eating this when I wasn't hungry. As soon as I bit in to the soft crumbly chocolate, I knew it was going to hurt, and I ate the damn thing anyway. I woke up at four with the now familiarly stabbing pain that comes from a gall stone. I walked, took a shower, sat on the couch, and waited for four hours until the pain went away and I could sleep.

As I watched the sun rise over the hospital next door, I experienced a total helplessness. If I was addicted to drugs or alcohol, I could go to rehab. I might even encounter sympathy instead of the lecturing shame. Why I often wonder do we assume that people who are addicted to food only need to show some will power? I have will power aplenty as anyone who knows me can attest but in the face of food, I am very very weak.

World Down syndrome Day 2014--Still Outraged

Okay so I lied. Well not really. The blog domain ends on March 27th and with it ends Green Tea Ginger. But she's still got one last post in her. Tomorrow is World Down syndrome Day. My second one. Last year, I responded to the accusation that I was angry, too angry. Too outraged. And I spent a whole year addressing why I was outraged. I regret nothing as they say. After all there was so much to be outraged over, and there still is so much out there. Of note this year is the murder of Louis Ruiz, a beautiful baby boy who happened to have Down syndrome. His mom murdered him under the guise of ending his suffering. Already so many stories show her as being an angel of mercy. After all our kids suffer right?

Maybe not so much. I mean, all of us suffer at some point. I suffered horrible gall bladder pain a few weeks ago and had to go to the ER. No one suggested I kill myself, or maybe my husband would be a saint if he put me out of my misery. No one said if he did kill me we could blame it on his ignorance about gall bladder issues. I know it seems I'm making light but I'm really not. Most of us at sometime will suffer pain, likely quite a bit of it over time. Some of us will get cancer. Some of us will get into accidents that might lead to life long bouts of pain. We will suffer emotionally from heartbreak, depression, anxiety. But the idea that we should be murdered for these things strikes most of us as quite horrible. And it's really the same for me when I hear someone describe the murder of a child with a disability as a mercy killing.

This year WDSD 2014 is focusing on health care or more precisely access to health care for those with Ds. It strikes that me the theme of suffering is actually very relevant to this year's topics. When people are seen as suffering anyway, there is often an attitude that one shouldn't give them as much health care. Why bother after all? There are too many stories of people with intellectual disabilities being denied transplants simply because of their ID.  Of course there is also the problem that Down syndrome is seen as a disease (it's not) and thus is associated with suffering. We must continue to be outraged over these wrong ideas, these ideas that quite literally kill our children.

While I can't speak for the whole community of those with children with Down syndrome (nor do I wish to be that voice), I can speak about my life over this past year. You see there has been very little suffering. Well R has suffered a bit over losing her place as the baby but I suspect the new found joy of having her very own BBF is easing that suffering.

Last year, I spent the first few months feeling very raw but I never felt like I was suffering. Neither was Jude. She was a thriving happy baby just like the rest of my babies (well maybe a bit happier than poor colicky beastie boy). We were working on that relationship, the one between a mom and her new baby. Note not on the one between a new mom and her "disabled baby." We were busy falling deeply in love. I felt raw because I knew what others thought about people with Down syndrome, and that new love that was taking root made me want to punch the world in it's big ableist face.

But throughout the year as I fought back against so much bias, I was also living my life with my family. There was precious little pain involved. We had our good days and bad days just like all families. There was so much joy. There were walks in the summer sun. Pool days. There were library visits. Dinners out. New foods to try. Birthday cakes to eat. Christmas presents to wonder over. We were drunk with love so much of the time as we always are in my little family. And one day I woke up and I no longer felt raw. I felt bad for all those people who had the audacity to pity me and my family. I felt bad for all the people who thought we were suffering.

Now let me be clear. I am still outraged. Still angry. There's so much to work to be done to make this a good place for my beautiful, perfect daughter to live. We need change, and we needed yesterday. Children are dying people, and we must address these grave injustices. I urge you to join in the fight. Speak out against those who abuse people with disabilities be it individuals or groups. Call your senators about the Able Act. Fight for health care for all. Treat people with disabilities with dignity. Check your own privilege. And remember that those with disabilities are not alien. They are as much you as you are them. We are all humans, all living beings, all creatures worthy of life.

Extending Acceptance to Myself

For the last few days, I've been down. Actually more then down. Sad, irritable, moody, anxious. I've been laying awake at night worrying over so many things: who likes me, who doesn't like me, who thinks I am awful person, oh no maybe I am an awful person, am I not doing enough with Jude, the homeschooling has been sucky, my writing is filled with errors, why if I am smart did I not get into graduate school, maybe I'm not smart and I've been deluding myself all these years, why am I so big? why can't I stop eating? I feel gross from all the eating but here I am pinning all kinds of cake recipes on Pinterest. This is my brain for the last few nights. This is kind of my brain all.the.time. Of course I'm getting little sleep and this doesn't help the self-defeating chatter that lulls me into a restless sleep most nights.

The other morning, I was sipping my coffee, and settling into my daily dose of anxiety when I started to wonder if maybe I was depressed. Depression does tend to prowl up on me and pounce and still has to bat me around for awhile before I notice it's there. But it seemed an odd fit this time. I was uncomfortable with the idea. Wrote a status update about it and deleted said update. Depression didn't feel right. I was anxious yes. Pretty down about some things. I was feeling insecure. Feeling like a failure. Yes. Check. All these things that come along with depression but...there was something off. Despite some snappy bs with the homeschooling kids, I was pretty content in my home life. I was happy with the few friends I had made in this little town. Spring is around the corner so I had been outside with the sun warming my skin. I had even got to enjoy a little snowcation in between the spring days. Is it possible, I wondered, to feel depressed about what a loser you are but be not depressed about your life? That would be a new one even for me, I thought.

But as I sipped on my coffee, thinking about some posts I wanted to write, I started to think about my own experience with what is likely ADHD. I wasn't sure if I was ever properly diagnosed (I was not I asked my mom) but I remember a childhood that clearly pointed to this category. I was the kid who was constantly out of her seat, who was in dream land (as my teacher's called it) most of the time. I sort of remember being insulated from the jeers and mocking because I wasn't really quite there. But I also remember that whatever made me think the way I did and act the way I did was not a good thing.

"Sit down and be still."
"Can't you stop moving?"
"OMG, stopping talking. All you do is talk."
"Calm down!"
"Stop chewing..your pen, your pencil, your crayon, your clothes, your hair."
"Don't click that pen."
"Stop moving your legs!"
"Just look at this desk. It's a mess!"(I was actually kept back a grade for a messy desk even though I was academically "advanced.")
"Snap out of your dream world."
"Earth to Ginger!!"

And really things didn't got much better when I grew up. I had an English professor tell me he couldn't understand how I could be so smart in class and yet be such a horrible writer. My proofreading skills were dismal (and still are as you've no doubt noticed) because I couldn't sustain the attention to proofread. My spelling skills were lacking and I often used less complicated words so I didn't have to figure out how to spell something correctly. What I could spell was often jumbled with all the right letters in the wrong order. But even with this, college was better than most other places. In college, my ability to focus on many different topics was an asset. I still think I switched from English to Religious Studies because RS allowed me to explore many different areas aka I never got bored. And boredom plagued me. I was always bored. Bored with relationships, bored with school work, bored if a book or movie got too long. Hell if a party went over three hours, I got bored.

Thinking about all this, I wondered why I was so afraid to own or to at least explore my own mental world that many consider a disability. As I finished up my coffee, I went to a site that gives you all the "symptoms" for ADHD. I hit 90% of them. I even read them to my son who cautiously nodded agreement on each one. I also found out that people with ADHD are 7 times more likely to experience depression and anxiety. And a light bulb went off in my head. I kind of think that what's been happening in Athens has little to do with depression and more to do with ADHD.

Being inside my body is rather akin to being inside some place very loud, very noisy and very bright. I think it's why I sometimes have mini break downs when I'm in crowded bright places. Overload. There is a constant stream of chatter, ideas, thoughts, memories and pictures all at once. When I am in school or a very structured job, I am forced to kind of wade into that storm and fish out what I need to function. I do this with very structured to do lists, and with deadlines. I've been quite successful at following through (my professors would have preferred more careful work I'm sure and a lot more proofreading) with papers, etc. But that said it took me six years to finish my BA and another four years to finish my MA (I got distracted. For real.). When we moved to Athens, I went from a great part time job that allowed me enough focus and rigidity to structure my life a bit to a life totally untethered by an external schedule. I've been floating on this sensory overload for three years now. THREE YEARS.

And because I couldn't manage it, I felt like a failure. This feeling bleed into other aspects of my life that I was already feeling pretty low about. Like not getting into grad. school. If I had only studied harder for the GRE, I would be in school right now. If I wasn't so lazy, careless, irresponsible, etc. It's always been pretty easy to beat up on myself. It became even easier when I wasn't tethered to a job or to school. My do lists mocked me as sad little attempts to make myself feel important. Each time I couldn't fulfill a bullet on the list, I abused myself mentally. I called myself names. I sneered at the girl who thought she was smart enough for a Ph.D. I snickered at her dreams to be a writer. "Look at you," I snorted, "What a loser you are! You can't even focus enough to do the damn dishes. Your kids are feral! You can't write a sentence without eight spelling mistakes. You're not only not smart, you're not committed." I started to eat uncontrolably, often eating myself into sickness. I would consume bags of Hershey kisses without even pausing to taste the flavor. The eating was automatic. And that lead to even more self-hate "You're huge!" You have zero will power!" What kind of person eats until they are sick?" "You're disgusting." This is my head nearly every day.

What occurred to me the other morning after I got done reading the lists that so explained me was that here I was fighting so passionately for my daughters to find acceptance in the world, I had forgotten to give myself that same radical acceptance. I had a million reasons. I wasn't officially diagnosed. I was just looking for an excuse to be a minority. People were going to scoff at me. I was just trying to excuse my innate laziness. But what I realized was that I owe myself a chance at this acceptance. I owe myself a chance to explore a road that may make it easier for me to accept what is going on in my head, to live with myself. To figure out a way to work with me rather than abuse myself.

This is partially why I need a Facebook break. Facebook in some ways is wonderful for me. The constant flow of such different information is exciting and interesting. (H said it's like the Walmart of the screen). But it's also really really hard for me to negotiate so many different social relationships, to figure out the nuance of one conversation and not carry that nuance into another. I make a lot of missteps while I try to handle the social media world, and have alienated a lot of people unwittingly (sometimes wittingly and I'm okay with that part of it). I end up being really anxious over these things, and then I just kind of explode from too much. This is why I have to keep going away for awhile. But this time I also really want to pursue a diagnosis and look at ways to work with the ADHD. I am even allowing myself to be open to the ideas of meds. This may not be a full time thing but I think that at least right now I need something to help me get through all the noise.

And mostly I just need to spend some thinking about what radical self acceptance is going to look like for my mind. What will it mean to re-frame ADHD as not something negative but as something positive?

Thinking About Love

Yes, yes, I know it's very common place to be thinking about love on Valentine's Day but if it helps ease your worry at me being common place, it's not necessarily romantic love I've been mulling. The Boycott Autism Speaks movement (which I 100% support) is having a flash blog today called "Love Not Fear." Of course being us we never did get anything off the ground although C and I discussed it a bit. C is always puzzled that people want to end Autism and the hate shown towards those with Autism. She's also puzzled at race hate as well. "It doesn't make sense." she'll tell me. She gets very angry when she hears people use the "R" word, and she tears up that people say awful things about those with Ds. Whenever people comment on how Autism has stolen their child or made them child a "robot," I think about these moments with C. C doesn't always process emotion the way I do but she is an incredibly feeling and compassionate child (most of the time, she's a kid and she has a lot of siblings ya know).

And I started thinking about love even more. I am in love with my family so deeply. I love my kids with an intensity that is frightening. My biggest fear is hands down losing those I love. Even the thought of living without my children and husband is a dark space that I can't really touch without feeling a little sick to my stomach. I have struggled with this love over the years because it scared me. I didn't feel worthy of the love I get in return. I was scared that something was going to happen and that I was going to lose this love. I'd do things to put a distance between H and I. I'd try to hold everyone a bit away and to close off tiny bits of myself in an attempt to not get hurt. But in the end, I decided to abandon myself to this love. To let go and fall.

Last night I started to think again about love, and about acceptance. A bit back I wrote that I thought we could love our children but that oftentimes we don't respect them, and I was called on that by a few bloggers. This is what came to mind last night when I thought about love not fear because I sometimes think love and fear are not mutually exclusive. Let me piece this out.

I try to live my life in awareness that dichotomy are just that dichotomy. I am not convinced that we can not place love into the categories of real and false. I think sometimes that love leads us to us places that don't look the way we imagine love in a perfect world. Sometimes love leads us to be petty, narrow little people. Sometimes love makes us feel scared.

Here's what I'm getting at. What happens when you have a child that has a condition or is rather diagnosed with something that you have been taught to fear your whole life? Does the fear you feel at those words mean you don't love your child? I can't answer this for everyone but I can answer it for myself. Yes. Resoundingly so. I loved Camille even as I began to suspect that she might have Autism. And I loved Jude even when I got the call that she had Down syndrome. I never stopped loving my children even as I was tormented with fear about what these words might mean.

For a very brief amount of time I began to understand what people were doing when they said "I love my child but I hate Autism/Down syndrome." For a brief time. People say this as a way to avoid having to make a big mental shift in how they think about these conditions. If they can think about their child as separate from these things, they can then go on to keep loving their child but have a way out of accepting their child as is.

This is where I think the part about acceptance is a big deal when we come to think about love over fear. Love over fear means that we didn't love before rather it means that we have to push through what we fear to come to a new understanding about things that used to frighten us. And we have to do a lot of soul searching about the kind of bias that lead us to fear that thing in the first place. Acceptance is vital here. Because when we accept our children for who they are, when we stop fearing that something that can't be separated from our children, we not only choose love but we choose to love without fear.

And it's not this is love more real but perhaps we can say it's more just. Love, the kind of love that changes the world, always means letting go of our preconceived ideas about things. For me that meant some intense reexamination of my ideas about intellectual disabilities. It's also meant that I have had to lay my parenting pride aside and listen to other voices. It's meant that I have to go against some pretty accepted mainstream ideas about therapy, etc. Accepting my children has also meant in a hard but beautiful way accepting myself; coming to realize that a lot of the things about my self that I have stifled or hated or felt ashamed of were things that I could be celebrating or at least accepting instead of suppressing.

Love is so much harder and complicated then the romantic dreams I envisioned when I was a lonely and awkward teenager. The romance books I consumed hadn't quite prepared me for the love I encountered in this world. I spent many years being in love with people who loved what they imagined they could change about me. They loved the way that my body could look if I only stopped eating so much. They loved the way my mind could be if I read better books or went to college. They loved the way I could be if I wasn't so depressed/emotionally damaged. They loved the way I could be if I could hide the quirks, the social anxiety. But it wasn't until I meet H that I found someone who love me for who I was, who accepted me as given. And over the years, I have begun to heal, to come out of the walls I hid behind. It's amazing what blooms when one is accepted and loved for all their many selves. And when I realized this, when I realized how freeing it was to be accepted how could I not wish this for my children? I do not wish to take away anything from them. They will grow and change into different beings each year as happens with us all but I will do my damnedest to ensure that this growing and shaping happens in a space where they are accepted. This is why I will not change my child to fit the world but demand that the world change to fit my child.

The Act of Telling

I started my first blog years ago. When I first began homeschooling, I used blogging as a way to record the day to day with Beastie Boy. At the time, I was also in graduate school, and since so much of that was starting to leak onto the other blog, I started Green Tea Ginger, taking my name from a box of Tzao Tea. In the early years, the blog was often silly, sometimes academic but rarely personal. There was a reason for this. I published something, I can't even remember what, that upset H because he felt it was too personal. We fought. I got angry, deleted the blog, and sulked for a few days. If I couldn't publish what I wanted, if I felt constantly censored then forget it. But after the pity party, I realized that this was not my life alone I was recording. I didn't have the right, as an ethical person, to write about about a life shared unless all those who partook in the sharing had a say. And from that point on, I kept things pretty surface.

Until I started to work on my thesis which was on telling and how telling is not just about making sense of realities but also about shaping realities. Someone suggested I write my own stories as a way of experiencing this writing. This is when my blog took a turn toward the personal. And it's also began the moment when I started to have to seriously ponder the ramifications of tellings. Because telling is never done in isolation. Beyond just the obvious considerations of those whom share your life, there are broader societal issues about who gets to tell, and what gets to be told. 

When I had Jude, and began to write about disability all these thoughts, planted so long ago, began to coalesce. Since leaving the academy,  I had begun to write more and more about my life. About my children. I had tentatively told stories about my relationship with Beastie Girl 1. And I had been told I was brave for sharing those words. I'll admit to a little thrill at these words. Being called brave gave my sad insecure self a little boost. And of course like most of us I had been conditioned into thinking that telling all was a brave thing. But even then I was confused about why it was brave to say I had a shitty experience with my kid and I kind of messed it up. Not because of her but because of my expectations and how I reacted to what she was trying to tell me. It wasn't until I had Jude that I knew. Brave was the word claimed by special needs parents. It took bravery to raise "these" kids after all. Brave was the word used by others to mark "our" experience.

But is telling all really such a brave act? Or is it a dangerous kind of shaping? A kind of story telling that is making it okay to apologize to those who kill their children with disabilities? In other words are these narratives shaping the very experience of those with disabilities? Are these tellings shaping how society sees our children? Wonder if our eungenic problem isn't about abortion but about telling?

Let me back up. I didn't blog much for the entire year of 2012. Looking back I wonder why. I had a lot going on. I converted to Catholicism. I was pregnant. I found out my fetus had Down syndrome. But I didn't blog a whole lot. I wanted to. My impulse was to pour out all the shit I was thinking and feeling on this space. But I didn't. I was depressed. Had been depressed for over a year (and not because of Jude...depressions isn't always about having a "special needs kid."). What stopped me was that what I was experiencing was ugly and personal. Too personal to put out there. It didn't need to be put out there. It certainly wasn't going to help me nor was it going to help anyone else. After I knew about Jude, I worried that it would effect how others saw Jude, and I didn't want this to happen. What I was feeling was about my own shit not about her reality, and I knew how powerful words can be in shaping how people see others. Even in the depths of the worst of my feelings, I knew this wasn't even remotely about Jude but about me. About yucky selfish me who had some shit to work through.

What I have come to realize is that it is not brave to keep sharing the same damn narrative about grief and despair over a Ds diagnosis. It's not brave to perpetuate that you lose you child to Autism. Or that Autism is something to feel sorry for.  It is not brave when your fear of something that you see as so different colors your entire perception of your child. Fear of difference too often leads to violence, and your supposed bravery of talking about that fear as something valid, as something that really is to be feared excuses that violence.

While you may have the right to your experience (and frankly I think is debatable..do you get right to be racist, ableist, sexist?), what you have to consider is that your experience is not your own. At least this is what happened to me. I don't get to tell Jude's story, or rather I could but if I do that I play into the power that already strives to keep Jude separate, oppressed different. I am creating a story that I certainly am involved in and will help to write over the years but it is not only my story and if I over share I do more to make it more my story than hers. When I stopped awhile back to think about what this means, I realized that this collaboration means me stepping back, about choosing to not let this be about me. This is about Jude, and about her right to be a fully human person in this world. This is about Camille and her right to be a fully human person in this world. I am their parent, their guardian, their teacher, and I have a choice. I can choose to tell a story that makes it about me. Or I can step back and wait until they tell their story (something which is happening beautifully with Camille). And while I wait, I will write not about the burden they are on our life (they're not by the way), nor about how they are super heroes. Rather I will continue to write about the injustice they face in this world. I will remember that the words I put out there are an act. An act that can build up the structures of power as they are, or an act that tears down and rebuilds.