Strangers

Our stay in the hospital involved a whole army of support. We had nurses, Drs, nurse techs, student nurses, and respiratory therapists. People were in our room poking, listening and talking. Jude took it all in stride because she's awesome that way. She also won the hearts of pretty much everyone she meet. But the respiratory therapists we had on Saturday won our hearts. She was a short, solid Indian woman, older with gentle hands and manner. She was very good with Jude, and handled her with the confidence that comes from years of dealing with little babies.

As she set up the nebulizer for Jude, we chatted a lot. I learned a great deal about her family. How many children she had. Her grandchildren. Where they all lived. What her husband did for work. I liked her, and looked forward to her coming. She would often stand and stare at Jude, smiling.

But what won my heart were her words about kids with Down syndrome. At first, I thought she was just going to rehash the stereotypes. Once she knew for sure that Jude had Down syndrome, she told me about all the positive news story she had seen. "There was a story on last night about how a couple with Down syndrome were married. It was very lovely because they were so much in love." And then she told me how much she loved her patients with Down syndrome "I know it's not good to say but I like the kids Down syndrome the best. They are usually very sweet." This is the kind of thing  I hear all the time. I never quite know how to respond because  I know it's meant in the best intention so I almost fear saying "Well you know I"m sure that not all kids Down syndrome area always sweet or stubborn or kind or..." I'm afraid if I say something it will make them resentful or angry. But since I'm trying hard to make people see Jude as a person I started to speak up, and then she surprised me.

"You know it's not just that they're sweet. It's because they're smart. They listen when you tell them what's going on and how it will help them. They're not all over the place. Usually at least" And she laughed. Then every time she came, she told me how smart kids with Down syndrome are. "I know people think they're not smart but they are very intelligent. When they want to learn things, they work hard to learn them."

Of course she was still engaging in stereotypes, and we all know that not every person with DS is any one way but.....But someone told me that my baby with Down syndrome was likely to be intelligent. That doesn't happen often. I usually hear a run down of all the awful things that could happen. Or something about her begin sweet said in a way that makes it clear that this is exchange for being intelligent. I like to think that this woman was not trying to fill in a stereotype. Rather I think she was seeing intelligence in a different kind of way. Regardless of her intention, it was a reminder that intelligence is not something so easily measured.

I was also reminded that there will be people in the world who will look at Jude with eyes not so blinded.

Father

Before I had the first trimester test, H and I ended up having one of the random debates in which we often engage. This time it was over abortion, and it wasn't as random as normal. I had always assumed H and I were on the same page in terms of not aborting for something like Down syndrome. Thus I was surprised when he brought up some points. He explained that they had debated this in a class he took his first year at the UNAM. And he raised concerns about health, quality of life, etc. When I was clearly becoming distressed, he insisted that he was just debating the issue. "It doesn't matter anyway." he said, "Chances are it's not an issue we'll ever have to face."

My first inkling something was not quite "right" was when the Dr. called and left a message about my test results. I had not heard the phone because I was napping. By the time I listened to his message, his office was closed. I cried in H's arm because I knew something was wrong. When I called the Dr., H was there holding my hand. "It's going to be okay." he reassured me. "Wonder if she has Down syndrome?" I cried. "It will be okay." he said. When I worried about whether we should have the amniocentesis, he gave me his opinion (Yes) but let me make the final decision. When it was time for the actual test, I pushed him away and went in with my mom. I was scared that he wouldn't love the baby if she had Down syndrome. 

When we found out, H was so positive and laid back. He held me while I cried but acted thrilled that he was getting another girl. I was sure he was faking it because my mom was there, and because he didn't want to hurt me. I was scared that he wanted me to abort but didn't dare say anything. When my mom left to go home, I finally just asked him "Do you want to keep this baby?" "Of course I do!" he answered shocked. 

And from that moment H was the one who pulled us into the light when I fell into darkness. He never wavered in his love for Jude. He shot down all my fears with excellent arguments. He was the one who pointed out that we didn't value the success of the world anyway so why was it a big deal to have a child who wouldn't succeed in such a way anyway? Did we want that for any of our children? When I worried she would be judged for how she looked, he was the one who pointed out that I had lived this already with four children who looked Hispanic. He was the one who voiced that we could do it. He never doubted. I knew he was worried about her health but it was never a reason to not love her.

When Jude was born,the joy on his face was clear. He hadn't been faking this for me as I had feared. He held that baby so tight, so close. He stayed with her the whole time they checked her over. She won his heart from the second she looked into his eyes. H showed me how to love her in those early moments. I don't think he ever saw the Down syndrome. He just saw Jude. 

I have heard a lot of stories of fathers who didn't want a child with Down syndrome. Who faked being strong so that their wives could depend upon them. But I honestly don't think that H ever faked anything. He really just didn't see the problem in having a child with special needs. For him, Jude was just another beautiful beastie to add our band. Her difference was no different than all of our difference. 

As I watch him with her, snuggling her close while he grades paper or reads articles, I realize he is a man who lives his theories. H's passion for humans rights and the theorists who write about such things is not just an academic love. It's a love that manifests in the ways that he combats the abuses of capitalism. The way he fights for the rights of undocumented workers. H is not idle thinker. He cares deeply about injustice. And because of this he never saw Jude as something to be feared, dreaded, or tossed aside. I am confident that H will fight as hard for Jude as he does for everything he loves deeply.

Your Worst Nightmare

I am 37 weeks pregnant. Huge and tired. Jude has not been moving as much and I am scared. The midwife seeing me decides to give a me a non stress test along with an ultrasound to make sure Jude is head down and ready to go. I lay down on the table, I'm a pro, and pull down the pants down over my monstrous stomach. The ultrasound tech asks what we're looking for and I explain the midwife's concern and mine my own. She looks at my chart, and says "The baby has Down's." I am not at a point where I feel comfortable correcting people so I just nod. "That was my worst nightmare" she says, "when I was pregnant with my last child." I don't know what to say. I am a little shocked, a lot sad, but not really offended. Maybe I should have been. Maybe I wasn't so angry because I had kind of felt that when I got my 1:5 odds. But  I had the grace that came from learning that for me there was much a worst nightmare: A dead baby. When I saw Jude alive and kicking on the ultrasound before my amino, I had known then that all that mattered in the end was that she was alive.

(So THIS is some one's worst nightmare. It's kind of laughable when you look at that sweet little face.)

Maybe I wasn't angry because I was too busy feeling sorry for the tech, and for the past me who just didn't know. Perhaps it wasn't sensitive of her to say this to me but I've rather become used to people using me as a confessional. But her fear is real and it's real for many woman who learn that there fetus or baby has Tri. 21. In a world that offers rather limited ideas about excellence, it is perhaps a scary thing to learn that your child might not ever reach those levels (not that many of us do anyway but we forget that when we hear about our child having a cognitive disability).  I had forgotten for a moment that what I want for my children has little to do with these constrictive visions of greatness. 

As I sat in another room with a contraction belt and heart rate monitor wrapped around my stomach, I thought about what it was that I feared, and what it might be that this woman feared. I suspect it's the fear of the unknown. I didn't know anyone with Down syndrome when I found out about Jude. There were a couple of young men at church. One was an altar helper (he's hardly a boy so I don't want to use that term). They both seemed like nice men but I hadn't talked to them. They certainly weren't scary or hideous. I was a bit scared of having a child with serious health issues. I was a little scared of having a child who could never learn. Of having a child who would always be a child. And all of these fears were based on ignorance. Children with Down syndrome often do have very serious health problems and risks. But there's no guarantee that any child wont' have these things. And children with Down syndrome respond better to treatments than "typical" kids. Kids with Down syndrome do have varying levels of cognitive impairment but they are capable of learning and growing just as we all are. Chances are that Jude will not only learn but that she'll also grow up, fall in love, and be an adult:)

What I came to realize as I listened to Jude's little heartbeat that a lot of my fears were about me. Could I be a good parent to a child with Down syndrome? I am so impatience and cranky. I'm droll and cynical. I'm sarcastic. I like dark comedies. This wasn't what I imagined a mom of a child with Down syndrome looking like. When people told me we would be the best parents for a kid with Down syndrome, I was kind of like "wow you think?" I didn't think so. We are not regulated. We pretty much unschool. We move. I worried that I wouldn't be strong enough to speak up for Jude. I hate challenging authority(seriously...I am a great one for abstract political activism but put me in front of a Dr and I lose my voice). I feel uncomfortable asserting myself in order to have needs meet. And some of the fears about me were a little selfish. I didn't want to be the mother who scarified her entire life for her disabled child. While my children will always be welcomed to live with us, I had always hoped that they could do that with a smidgen of independence. These fears I don't have the answers too. I suspect though, having meeting Jude, she's going to be okay. She is seriously a fine proper beastie girl. She appears feisty and properly leery for big sister R. She has a spark in her eye that promises mischief. And the other day I watched a very reassuring video where a preteen girl, gave her mother sarcastic what for. Very droll indeed. I think that perhaps Jude will be a punk rock girl that just happens to have Down syndrome and that seems like a pretty awesome future.

When I went into my last midwife visit, I proudly brought Jude to show her off. After all, these visits are partially about a triumphant return. The ultrasound tech was at the desk when all the aides came to admire Jude. Every one exclaimed at how lovely she was, and were thrilled at her health. I meet the eyes of the tech, and I could see the wonder there. I thought and I better she heard somehow "so this was our worst nightmare? Imagine that." I think maybe that in moment Jude gave us our absolution.

My Beautiful World

Today's picture from Rethink Church's Lenten photo-a-day challenge was "Love."  

Jude is sick today. Her eyes have red circles in them. She has a hacking cough and ends up chocking on her own mucous. I'm horribly worried as I hold her close, watching for signs of breathing difficulties. She has a higher risk for RSV so I'm a mess. Even being this sick, she is so sweet though. As I hold her while typing she keeps smiling at me so I'll look at her. Her eyes sparkle with pleasure when I laugh her way. She started cooing a few minutes ago much to the delight of her siblings.They're worried too. Even R. She is adored and loved. 

What's funny is that I worried I wouldn't be able to love this child. How odd to think that love would somehow not come because of an extra chromosome. Yet I hear so many stories of families unable to love a baby with Down syndrome. And in the darkest moments of night, I sometimes thought I would be that person and I hated myself a little bit. I also worried about the other children. Would they come to resent her? Would they see her as too different to love

But it was a groundless worry. She has touched us all. She is our beautiful world. 

Go Back To Mexico

It happened on a late night Walmart run. We had all the kids with us and were making our chaotic way to the store from the parking lot. A car whipped around the corner, almost hitting us, and in a moment of great restraint I yelled "Watch it."

The car squealed into a parking spot beside us and a boy, about 12, jumped out of the car and said to H "GO BACK TO MEXICO!" We were kind of stunned, and angry of course. His mom got out and the smirk on her face made it clear that she had heard her son. We went into the store and H said "Hold on, I'm going to say something." When the woman and her son approached H walked up to her and said politely "Did you hear what your son said to me?"
"No." she answered, getting ready to put out attitude. She smirked at her son. We all knew she had heard.
"Well he told me to go back to Mexico." H said.
"So?" the woman answer while her son snickered.
"It would be like me telling you to go back to Africa."
"I'm not from Africa."
"How do you know I"m from Mexico?"

The woman walked off clearly missing the whole point. But her flippant disregard for seeing my husband as a person as opposed to a stereotype serves as a rather poignant object lesson: The immigration debate is all about race. People are not telling the white Eastern Europeans we know to go home. Nor the Canadians or the British. And amazingly enough I know at least one person from each of these groups who is here illegally.

When I drive through Gwinett and Barrow County here in Georgia, I usually see at least one car pulled over. Never once I have seen a white person pulled over yet I see white people speeding by me going at least 30 miles over the speed limit, running lights, and driving recklessly. But who do I see pulled over? The Hispanic guy with his truck full of lawn equipment. And he was usually the guy who was following the speed limit.

H and I hear stories. The guy we hired to do our lawn last time is a refuge from El Salvador. Yet he was ARRESTED because he "looked like" someone they were looking for. When they finally released him they told him he better go report to ICE even though he told them he was an refuge with legal status. These stories make it clear that someone is always watching...watching Hispanics. The stories become a kind of threat of violence, used to install fear and insecurity among people of a certain color. We hear them from both people who are documented and those who are undocumented.

And the problem is two fold. First, the reality is that the vast majority of illegal immigrants are not breaking the law. Many of those who are arrested have been here for many many years. They have families and communities who depend upon them. Arresting them has become a political warning, a threat that has no meaning because ICE is not rushing to deport these people. In addition, with the recent privatization of prisons someone is making a sweet penny through these actions. And the penny belongs to all the good tax payers who have their panties in a wad over illegal immigrants stealing something from them (what that is is questionable).

Second, the law ends up targeting all people with brown skin including those who are here with documents. My husband has been pulled over many more times than I, and I assure you he is by far a better driver than me. What has happened is that "Americanness" has become connected to a certain color and brown is not it. I am not a big fan of nationalism but I am a fan of fairness and  this country belongs to brown people perhaps even more than it does to white people. These laws attempt to draw lines separating those who can claim a nationality and thus a sense of legitimacy.

I envision a world for my children when there are no artificial borders.

Hate is driving these reforms. Hate and Prejudice.

Unveiling the Mysterious

When I became pregnant with Rowena, I was determined to embrace myself as a pregnant earth goddess. I would shunned a medicalized birth. I would embrace nature. My body knew what to do I decided, and I would enter the mystery of birth. I skipped all the prenatal tests because "I would not abort anyway." But really I just thought deep down that I would not have a baby with Down syndrome. Something like that couldn't happen to me....

Flash forward two years later, and I'm finding myself in a nurse midwives office, asking for ultrasounds and all the tests I can get. I'm almost 40. I'm scared. Because there is something inside me stirring and sending out whispering tendrils of "Yes this could happen to you." And suddenly I just can't stop thinking about Down syndrome. H and I debate about abortion if a baby has Down syndrome before my "risk" results are even in. I didn't know it was even an option and he assures me this is theoretical. Then we get the first call: 1:5. And now we have to decide if we're going to pursue even more testing. H is fro the testing but he will honor my decision. I talk to our specialist and he says "Well a lot depends on what you'd do."This is an euphemism for "Well if you're going to abort.' I tell him that we'd never abort for Tri. 21 but that we might consider it for Tri. 18. He suggests the amniocentesis, and we scheduled the procedure for the day I hit 16 weeks. I'm scared. Terrified of the thought of them jamming a giant needle in my belly. I also "know" that the baby has Down syndrome and I'm a mess because I fear this as well. I waver back and forth on the testing. If the baby does have Down syndrome I feel I want to know. Then I wonder if maybe not knowing is better because at least I can enjoy my pregnancy. One has to take into consideration the risk of miscarriage as well. It's too much, and right up until I am lying on the table, I am not sure if I'm doing the right thing. As most you know this is when we found out all about Jude, and her Tri. 21. And clearly we chose to not abort.

Lately I've been rethinking the testing dilemma. As I began to read Down syndrome blogs and participate in various online forums, I discovered there was much conflict surrounding prenatal testing. With the availability of a test that could could give more definite answers with just blood draw the controversy is heated. There is a legitimate concern that this kind of testing would lead to more fetuses with Down syndrome being aborted (the number is already very high). I had no idea that I was walking into such a storm. Initially I was a bit defensive of our choice but the more I read the more I could see the complicated ethical dilemma inherent in these arguments.

One of my favorite memoir writers on Down syndrome, Amy Julia Becker, has written a book about testing where she compiles not just facts and information but also personal stories. She has some of those stories up on her blog. They are worth a read as they cover a range of views including someone who tested and chose abortion.  This of course played into my own rethinking of testing, and then while answering a friend's question about the NT ultrasound and first trimester blood test I realized this was something I needed to write about.

You see in some ways the testing scared me, and scares me now. It takes away from the mystery that is birth. The ways that we can now see into the body with machines is a mapping of what used to only come through rifling through criminal corpses. Now we have machinery that does this work on our living bodies. I lay on a table and through a machine see the mystery that grows inside me. With the help of a long slender needle, the mysteries of my baby's genetic code are laid bare in a Petri dish. It is an awesome and terrible thing.

But that said, I have discovered that the mystery is still there. Despite all this biological mapping, there is no way to tell what is the essence of Jude's being. Because it is not her Tri. 21. The mystery of Jude will unfold throughout her life shaped by culture and biology. By things that I can not see or control. No tests can tell me that Jude will be happy or sad. No tests could have predicted that the love that we all feel for her. The beauty she brings to our lives. Just as not test can predict that for any unborn child. Yet, people chose to abort for these things. When they hear the words "Down syndrome" or Trisomy 21, they make decisions as if there is no mystery. That is a tragedy and something I will address in the coming weeks.

My question to myself, a question I feel I have to probe because people will ask me my opinion is "Would I test again?" And the answer, at least right now, is yes. I would test because of a blog post I read when pregnant with R. I won't link it or even mention her name because it's not important. But the story was so heart breaking and so sad. I sobbed hysterically when I read it. I felt I could never ever bear the pain she bore. To have a perfectly healthy baby with Down syndrome was awful! And when they offered me that test when I was newly with Jude, I knew that I did not ever want to feel that when I looked upon my new born child. I wanted to get all of that shit out of the way before I held her in my arms. I wanted our children to know and not be afraid. I wanted the gift of preparation. To read how others felt, to allow myself to feel the dark ugly things while not looking at her face.

And it was a hard burden, I tell you now. It is no easy thing to carry this knowledge and to not be able to look upon the face of the mystery inside yourself. I had bought a lovely journal and I could not write in it. I could not touch those feelings then, the exposed nerve endings of my soul.

When I saw Jude, it was still a little shocking as if a part of me had still thought a mistake had been made. But I never looked at Jude and felt her awful. Now I know there are many many women who are given a birth diagnosis who do not feel as the author I read felt. And there are just as many women who get a prenatal diagnosis and do not grieve as I did. This is why it's important I think for women to read these stories, to listen to the different voices because ultimately it is about the choices you will make and which great mysteries you will choose to unviel and those you will leave covered.

Eye of the Beholder

I remember with that vivid clearness which comes from those defining moments in one's life my last visit with the fetal medicine doctor. November 1st. I was by myself as R has proved herself a bit too much in the office. At this point, I was 90% okay about having a baby with Down syndrome. Most days, I didn't even cry about it. The ultrasound tech was the "nice" one for which I was grateful. The other one always acted angry, and I wondered if she was disgusted by our decision to carry Jude to term. 

When she ushered me into the room, we joked around a bit about the drama always to be found in this kind of office. I laid down, pulled my shirt up, and pushed the maternity panels on my jeans way down past the smooth mountain of my stomach. We both chucked as Jude kicked in response to the cold gel and the pressing of the probe. I was tired. We had been up late for Halloween. We had also done the "big reveal" in announcing Jude's pending arrival but we had not told many about her diagnosis. I teared up as I always did to see little body inside me. The lazy push of her legs, and the way she always seemed to be sucking on her fingers. And then it got kind of strange, and the moment was thrown in a darkness that would hang over me for weeks to come. The tech switched the machine to give me a 3D view. The image on the screen was frankly hideous. The tech didn't give me much time to look before switching back to normal view. She fumbled with the probe and chattered about some inane things clearly tying to distract me from the image. I tried to push the picture out of my head but it pounded me "Was my baby going to be monstrous?"

(Jude NOT a monster well sometimes but in a lovely way)

It was a strange moment because I did not think people with Down syndrome looked monstrous. I was starting to see them as I do a lot of people...some were attractive to me and others were not. But in that flash of image, a fear that shock with the shallowness of it, a fear that made me ashamed of myself, surfaced and it was hard to shake.

Before you all hate on me, I think it's important to give a little background. I used to think I was not a beautiful woman myself. I am a master at picking out the one picture where I look good but there are so many that are just kind of scary. When people see my kids, they say things to me like "Your husband must be gorgeous."  And I was even asked once in a kind of skeptical manner "What do you think your husband sees in you?" I didn't want that for my children. I don't know if it's pride I felt when strangers would say "You have the most beautiful children I've ever seen' or more relief. One of the ways we all too often live through children is in not wanting them to relive our own lives. We place our own insecurities upon them and then try to shield them for the pain of those past hurts. Hurts that of course were never theirs to begin with.

And how I was going to protect a child that even I found monstrous? Of course she wasn't born monstrous at all. She's beautiful and perfect. Look at that face. But I know there are some awful people out there who will only read the Down syndrome that is imprinted upon her face as surely as her race is...

When I was a child, I was bullied a lot. We were poor and didn't dress as expensively as the other kids. Plus I was strange. Super hyper and weird acting. I spent most of my fourth grade year being beat up during every recess. It was totally connected to my looks. The strange kid who dressed like a freak. And as I got older it just got worst because then I got fat and pimply. I have painful memories of people throwing food at me in the cafeteria and yelling "Eat it up piggy." There was one boy in seventh grade who called me pizza face everyday for months.

I went through some bad relationships because I wanted someone to tell me that I was beautiful and would hook up with anyone who would say those words. I ended up with guys who didn't really like how I looked or wanted to change it. I dated one man who constantly told me I was fat until I was starving myself to just get thinner. I had fantasies of sand papering the zits off my face. In my insecurity, I was completely obsessed with what I looked liked. I didn't care about any other aspect of my personality. I went through a few periods where I did things to make myself look really odd like shaving my head, wearing outlandish goth clothes. I liked myself during those times because everyone thought I was ugly anyway but this time I had some power in that ugliness manifested itself. It was a time when I felt very in control of my looks and how people reacted to them. In some ways I felt I had stepped outside of cultural definitions of beauty. I had reclaimed a space in which I could find in my extreme difference beauty.

When I look in Glamour I don't see people with Down syndrome. For that matter there are not many people with disabilities period. Last night H said to me "Do you want that for Jude anyway or for any our kids?" And I realized I didn't. My kids are so strong, confident, funny, clever and yes beautiful but their beauty comes from all of the things I listed before beauty. I don't want them to the kind of beauty that sells cars or clothes. I want them to be the kind of beauty that comes in the form of light shining through the trees or the way that beauty comes unexpected in a photo of smashed pumpkins. I want my children to be beautiful because how they love. I want beauty of to define the acts of compassion they engage in. As opposed to being loved because they are beautiful, I hope that as I have, they come to be beautiful because they love. 

Guilt

The older three kids had their First Reconciliation Saturday. They were a little sulky and tired and grumpy until the actual time came to meet with the priest and then they were fine. It's hard to be scared of our Friars. After they came back to me, I realized I had not yet done Reconciliation either so I decided it was time. I was nervous too. Confession is an odd thing for my Protestant self. In my church, you were "born again" and that was it. Sins whipped clear. Of course it was complicated because being human I kept screwing up as humans do especially humans set with the impossible task of constant holiness. There was lots of guilt ridden nights, hiding under my covers, scared of the demons I was letting in through my sinful nature. There was also a profound lack of practice to release this guilt. Instead it festered into resentment.

But I figured it was only fair for me to confess as my children had done. I sat down opposite Friar Tom (he's my favorite even though Friar David is a very close second). I was holding Jude, and I clutched her tight. Friar Tom was who I talked to when I first found out about Jude. He had told me I was strong and good and that I would be okay. His words had carried me through that storm. But even so they were not enough to quell my doubts. I felt that I had lost my faith when the Dr. told me. And I don't think I even saw a glimmer of that faith until I looked into Jude's eyes and knew it was going to be okay. Saturday I looked at Friar Tom and saw the kindness that draws me to him, and only kindness. I don't doubt he's noticed my lack of attendance at Mass. I don't know feel comfortable when I don't know what I believe anymore. And plus I felt guilty. Guilty about the feelings I had about my beautiful child.

With tears just behind my eyes, I told him about how I felt like I lost my faith. How I felt so much pain and guilt over the feelings I had about Jude. How I didn't know how to rebuilt that faith. And he said "You don't see it but you are a great woman of faith. I see it." And then he talked to me some about how to rebuild my faith. He reminded that we all doubt and he said "If I could wave a wand and make all doubt go away, I'd do it for myself too." And the he said "Sometimes all we need to do for faith is to breath."

And so I'm breathing....slowly breathing in the smell of my daughter. The clean cold air of winter. The first stirrings of rebuilding so much that I let crumble. And I am also working on Friar Tom's parting words to forgive myself. When I walked back to the pews, I felt a lightness of being. I had let go off something heavy in that moment, given this heavy despair and doubt away. I had been absolved and I knew that when I feel again this sad weight, there is a place I can go.

Money, It's a Gas.

Money, it's a crime 
Share it fairly 
But don't take a slice of my pie 

Like most leftist Christians, I am attracted to the story of Christ whipping the money lenders from the temple. This is my kind of Christ. And I find that as I delve deeper into Catholicism, I am amassing a list of saints who embody this spirit from St. Francis (who gave away his father's fortune) to Dorothy Day (who spent most of her life literally living with the wretched of the Earth). Even Benedict XVI (for whom I have no love) spoke against capitalism.

If I hadn't been acutely aware of the damage captailism does to so many, it's been hammered home again as I meet more and more people who have children with Down syndrome. People who are trying to get help with the insurance (health costs can be prohibitive with our kids). People who have to quit their jobs because of the care and time their children need, and who then have to liquidate their savings so that they can qualify for social security insurance (which is not easy to get for the record, and which MUST be used for the child...you have to keep receipts). We can not set up bank accounts in our children's names or we jeopardize their chance at getting social security later in life although we know that SSI will not cover all their expenses. Thus we have to hire lawyers to help us create special accounts. Nothing is easy despite the outcry from so many that "others" are using the system.

This election season was very hard for me. I carried in my womb a child that I knew was going to be dependent upon social services for much of her life. And as I wrestle with loving and fearing her, I also had to daily confront post after damn post about how my child was stealing some one's damn taxes. And if it wasn't my child, it was the mentally ill homeless guy, the black woman who faces structural racism every bloody day of her life, the immigrant who makes 3.00 an hour picking some one's vegetables. No one wanted their damn taxes to pay for these people. There was a profound lack of recognition that we are all in this together. There was a distressing lack of compassion as people wrote things like "I'm sick of MY taxes going to pay some welfare queen with her five kids from five different men." And while I could point out that a lot of the money went to kids like Jude, people would usually do the worthy poor thing. I'm not sure if that's a good route either. I'd rather see us help each other because we're all in it this together.

But the sad fact is that our society worships money. Most of us want things: big t.v.s, nicer cars, big homes. I don't know if there anything inherently wrong in wanting these things but when the desire to make money to get these things overrides our common humanity it is a problem. When we begrudge our tax dollars going to help the least of these, we have a problem. When our desire for things propels into greater and greater debt, we have a problem.

The far right does not want to abort my child. But they also don't want to help me support my child. No doubt they feel that I do not deserve to have my child. I was not responsible enough to have a child aka I didn't have enough money. But what the Far Right seems to forget that is that we have enough money to bail out bankers who gave themselves huge bonuses but are unwilling to spread the money into the public sphere. They don't want to acknowledge that we have allowed people to get richer than small countries, and they don't want to hold those people responsible for paying back the society which enables them to be so rich.

Money is the real God in our society.

See

It's late. H and I just spent hours talking about our fears, worries, people's attitudes about race and Down syndrome. I have so much swirling through my mind that it's hard for me to settle anything into coherent sentences.

But there's this...

If you're following me on Twitter, you'll likely have noticed that I'm doing a photo a day project from Rethink Church. Today the word was see. This ia me seeing Jude. I don't think it's the exact moment when things came together for me...I was still seeing the Down syndrome but I was also starting to see her. And perhaps it's a lovely moment because I was seeing both things. After all while she is not Down syndrome but she does have that extra something.  But I also see this photo as me beginning to see a whole different sides to things. Seeing things that are ugly about myself. Seeing that Jude was like my other beasties. Seeing that because she was beautiful and perfect maybe my ideas about those words needed to be rethought. Seeing humanity. Seeing birth. And life. Just seeing.

There is nothing to compare to this seeing...the seeing that comes right after birth. To look down and lock eyes with that baby, that creature that has grown inside your body. That child that is your soul and your heart. And with Jude it was intensified because of the fear I carried, the worry, the grieving. When they laid her on my chest and I looked into her eyes...oh how I wish I could somehow capture that moment. The universe trembled, I swear, and I broke apart. 

Letter to Jude

Dear Jude,

Today you have needed me more than usual. Not just me really but rather you have need human arms. I saw it when you cried out as I prepared lunch for your siblings, and you fell asleep in your brother's arms. Sometimes you are able to sleep with out those arms but today you needed us. As I hold you even now, and you look up at me with those eyes, already filled with recognition that I am the one who protects you, I find myself over come with how much I need you too. 

You see, my lovely girl, we are two sides of the same coin. I feel this for all of my children. It as if you are all so imprinted upon my heart that to not have you would be a chasm. I did not understand this when I had children. I knew that the little babies would depend upon me but not how much I would depend upon them. And you Jude might possibly need me more, or at least longer than the others. I am glad that you have come now when I understand the nature of healthy mutual dependence. This is not something I always valued.

As I grow older, Jude, I have begun to realize that we infantilize those who need others. We do not value the beautiful inter connectivity of people needing and helping each other in that need. We want people to pull themselves up by their boot straps, to make their own way in the world. We after all see ourselves as being above that kind of need. Because we see our world this way it is easy to be blinded to the ways in which we actually prevent some people from making it. We blame the poor for being poor like it's a moral failing after all they are "dependent" upon the government. And because we value independence and individuality we often fight for our own interests instead of those of the whole community. We see this in the fight against gun control, the push to cut social programs, and in the way we view the "disabled."

It is only in the independent individual that we grant the quality of individual. A disabled person is seen as a dependent on someone who is deemed "whole." They are often seen as their disability as if their dependence washes them of personality or humanness. When I tell people that you have Down syndrome, they give me pitying looks and say things like "She'll have to be with you forever." And I have started to answer "I wish but I suspect like my other children she will leave and take a piece of my heart with her" If only you were to be this baby forever but you will not be this infantilized other people imagine of the disabled (especially it seems of the cognitively disabled [I hate these terms, I fumble for the right words, have patience with me]). They forget that you will grow up and have adult desires. That you will exert that push to define yourself against me just as I did with my mother. 

But they also forget that we are dependent up on one another. We as humans are always together forever. Christ reminds his disciples of this when he tells them that they will always have the poor with them. And aren't we all the poor? The wretched one earth? All of us need all of us. We can pretend that our lives do not touch those around us and those far from us but it is pretend. What we buy, what we believe, what we do, profoundly effects other humans. We are not alone.

Jude, I hope, you will always be my heart as are your siblings. We need you as you need us. You are now a piece of our world that we will set forth like a butterfly. But you are a butterfly that will always tie back to your home which is not a physical place. Instead it is a people.

Forty Days

"We escape the essential work of Lent if we turn it into some kind of spiritual Olympics in which we suffer for forty days to win Easter. This isn’t about proving our holiness; Lent is about waking up and remembering who we are and what we are here for. " Porter Taylor, Episcopal Bishop of Western NC

Today is the day that Catholics along with some other denominations start Lent. Forty days of the desert as Friar Tom likes to point out. Before converting, I saw Lent as a time to give up a bunch of things aka make oneself suffer as much as possible. And it's clear from my Facebook feed that this is how a lot of people still view Lent. My view has changed though and last year upon ending Lent I vowed to do it different. And then came Jude...who shook my world up. Suddenly Lent has taken on a whole new meaning for me.

At this point in my life, I see Lent as a way of becoming "Christian" ask Christ like. No matter your feelings on Christianity, I think that most people can get behind the idea of Christ as a great teacher of compassion, humility, holiness, love, peace, etc. These are qualities I don't always possess. I am angry, impatience, bitter, mean, petty, and not always nice. And sometimes I forget that this is not really who I want to be, or even that it's easier just to be a nasty person. Lent is a time, I think, to reset ourselves. A ritual to remind us of our common humanity (aka the dust on our forehead reminding us of our mortality, something all humans share. We all will die), as well a ritual time set aside to bring us face to face with what we may have left at the side of the road during the year.

Lent is not about taking on some great characteristics for 40 days and then returning back to the ego self. Christ, after all, did not emerge from the desert unchanged. Lent is the time where we can set ourselves back on the road to being better human beings. It is a time to clear away that what keeps us from being better people.

Jude woke me up to many uncomfortable things about myself. As I struggled through the dark times of carrying her in my womb, I often thought back to Friar Tom's homilies about the desert. In this desert, I would not say I suffered so much as I was forced to look upon the face of my own ugliness. There was nothing else to distract me from the things that I hid in the dark places of my being. What is crucial is that I didn't feel shame when I did this...rather I felt an incredible sadness. Now let me be clear, Jude did not do these things to me. Rather how I responded to the news informed the things I began to examine. I don't like the idea of viewing Jude as a lesson. She is a person not some kind of moral play. But because of how I see the world, I spent most of my pregnancy reflecting on disabilities, and how I signified those with disabilities.

This Lent I want to spend some time reflecting on what I learned as I struggled to imagine my world with a child who has a cognitive disability. A child who may very well face some physical disabilities as well. A child who will wear her difference on her face in ways that many people find hard to look at. In ways that many people do not find lovely or beautiful or perfect. I also want to spend some time thinking about other groups who have signification forced upon them. People who have to struggle against definition by others. I want to search out groups of people whom I have forgotten to think about because they did not intersect with my life in some kind of personal way.

Thus I am committing to blogging for 40 days about disabilities, immigration, race, gay rights, gender, etc. I want to be bold in my defense of what it might mean to give human rights to all humans. I also want to think about beauty, intelligence, values, qualities, etc. It's a tough order but it's how I process my world. I was attracted to Catholicism for a variety of reasons, and while I don't always agree with all the Church does, I do find myself attracted to the way the church champions the right of many of the down trodden (and I often wish she'd do more but that will come forth I'm sure). And I think that the Christ I am attracted to is the one who whipped the money lenders out of the temple, the one who feed the poor on the mountain, the one who surrounded himself with prostitutes, tax collectors, and the disabled. This Christ inspires me to make myself into a better human, a more compassionate person. Indeed he makes me want to wake up to that which I am here to do. And not because I am afraid to go to hell but because hell is here and I wish to improve that condition for all.

Virtual [Real] Community

After Dr. Rosemond called me to tell me that Jude had Down syndrome, I turned to the Internet, of course. First, I told my friends from a due date club I had joined when pregnant with Rowena. Even now looking back over their words, I tear up. They are Jude's special aunties and for a long while they were the only support I had (H was there as always, of course). They were with me when I felt I was going to just sink into my own sadness. They reminded that there was going to be joy. They hooked me up with friends who had kids with Down syndrome. When I doubted my ability to parent Jude, they bolstered my courage. I haven't meet most of the women yet I love them dearly, like sisters. They were really my first community in this journey.

Later, it was Baby Center and the wonderful Down syndrome forums the site host. There I learned the language to talk about Jude's disability. I discovered the things I need to ask for from my doctors. I found other women who were grappling with the same emotional swings. And slowly, I was able to reach out and offer support instead of being the one who needed it, and that offering became a support for me as well. After Jude was born, I was able to turn to this group and ask questions, to ease my worries, to know that others had been there from the hard things like "Why won't she gain weight?" to the easy things like "What is a good natural lotion to use on her dry skin?" And this group morphed into a smaller group of women with new babies whom I already feel quite close to. We are all at the same place on our new journey and it's wonderful to feel their presence as I fumble through these early days.

And now I have a [real] life group. Although I'm not sure I'm the like term real anymore. In the flesh perhaps because all of the people have been real. This in the flesh group is local and the first time we meet them, I started to cry when I introduced us to them. I wasn't sad anymore but the relief of having people who just "know" what this means. The joy, the fear, the guilt...to be with them almost feels like being able to drop a mask, to lower a curtain. To meet their beautiful children, to see what the future might hold for my darling Jude is an amazing thing. Because what I see when I meet their children is that these children are their own people. They are not Down syndrome. And this is Jude's future: a path not quite laid out. Like all of us it's a path that has been marked by her culture, society and community but she will add her own details as she walks. It took a multifaceted community to show me this.

The other day, on of my online communities, someone asked us what surprised us the most upon receiving our diagnosis. And my answer was two fold. First the joy. No one told me there would be so much joy. I should have known since I experienced it with all my beasties. But the other thing was the community. I am still touched at how the Down syndrome community drew me in right away. All my emails were answered right away. It made me feel sad that I had to experience having a child with a disability to experience this amazing group of people. And then there was the community of friends and family. The people who loved us and loved Jude. The people who just said "She's beautiful." The people who said "Don't forget that there will be joy." The people who promised us "You can do this." And the people who love Jude because they love us.

Tonight Piper meet a boy about her age. A boy with Down syndrome. She told us as we walked to the car "I meet a boy. I think he has Down syndrome." And then she proceeded to tell us about how awesome at ball he was, and how he wanted to have a contest with her. Just the normal stuff a kid tells you about meeting another kid. And it hit me that this amazing community was opening up a whole new world to my kids. A world that was offering them a bigger space to expand within...a bigger community to embrace.

Growing Up

I got up this morning after H had left for work. The older kids were still snoozing as I sat Jude in her chair and prepared breakfast for R and I. As I sipped my coffee waiting for the water to boil, I noticed that someone had written all over my cereal box. I had only purchased it yesterday and had not recalled Rowena being anywhere near it. I picked it up and upon closer inspection discovered a commentary on my chose of cereal.

Initially I thought it had been done at the store. The commentary was so sarcastic and clever. But the writing was familiar. I laughed regardless of who did because really pure Bran cereal is nothing to write home about. When Umberto emerged I asked him who did it and he said "Camille."

Ahh..Camille. Upon further reflection it was not surprising. Camille is deliciously sarcastic. Her humor is sharp and a big stinging. Her take on the world is dry. Raising Camille is at time frustrating and at other times incredibly rewarding and rich. She is smart and inventive. She takes initiative. She reads everything. Her knowledge is impressive as is her take on said knowledge. With Camille, you have to be on your toes. But she's also arrogant (never needs help even when she does), dramatic, at turns over sensitive and utterly unempathic. In other words, she perfectly human.

With Camille, there has often been struggle. Earlier posts here talk about my frustration with things like getting her out the door. Balancing her needs of the solitary with my other kids' needs for the social. But as Camille gets older, I find that those struggles are not so much not happening as much but rather they over shadowed by the pleasure I take in the person that is unfolding. While I enjoy most ages of my kids, and despite my banter about the tween and teen years, I have to admit that I love watching Umberto and Camille morph into the teenager. I want to say they've become real people but that sounds much to insulting to the younger beasties. But in some ways it's true.

Of course all of my children are people. But they become more multi faceted as they get older. Their interests start to intersect with my own interest. They've become interesting in ways that are more adult. I enjoy my time with them in ways that I had not anticipated. The banter, the common interests, the sharing of music and movie and t.v. shows. Camille loves Dr. Who (she's a Tannent fan girl even). She loves to debate. To crack jokes. To make observations on life. These little things do make the struggles a bit easier.

But mostly they restore my faith in how we school. Sometimes I go through huge anxieties about the way we approach education BUT moments like today make realize that I like the kids that are coming out of our family. I like the wit, the play with words, the playfulness that those simple graffiti on a cereal box represent.

Unexpected Joy

Yesterday at the park, a mom friend was holding Jude and said "You know all the people I meet who have kids with Downs say that these kids are a special blessing." I answered without even thinking "They are." And she came back "Well aren't all your kids a special blessing?" It was a good come back and it left me thinking like all good come backs do. The first answer is that of course all my kids are special. I love them all fiercely and with all my soul. But there is something different with Jude, and I couldn't quite put my finger on it. I don't love her more. Yes, I love her differently but I love all of them differently. At first, I thought it was about choice.

In some ways, I argued to H, we choose her in ways we didn't the other kids.
Weren't all the kids a choice H argued back.
Well not like her. We could have chosen to abort her.
We could have done that with any of them.
But with her it was something a lot of people do.
He remained unconvinced. To some extent we are both right. Jude's being her in some ways came from deliberate thought especially once we knew about the Tri21. I'm being honest here. I didn't think of abortion as an option but it was there kind of lurking in the back of my mind. But to say this belies the choice inherent in each of our children. They were all beings we wanted with us.

I stewed over a bit more and it hit me. It was in some ways about choice. About choosing joy. When we first learned that Jude had Down syndrome all we knew was a list of disorders. A lot of parents with kids who have DS talk about this list. It's pretty over-whelming and frightening to see what risks your unborn baby faces: heart problems, epilepsy, bowel problems, leukemia, cataracts, early onset Alzheimer's. The list goes on. Let's be real: there is no joy in that list. I had a hard time seeing Jude as anything but a bundle of symptoms wrapped in a baby blanket. Looking back on her birth, I realize some my shock and distance came from this...she was a baby. I don't know what I expected. But there she was a squalling, newborn looking at me, her mama, her world. And when I started to love her, I didn't know what she may be facing health wise. They hadn't done the final tests yet. Instead, I began to fall in love. To welcome a joy that I had not even dared to consider.

This is why I called Jude a blessing. The unexpected joy. Perhaps it is more intense because I didn't think I would feel any joy. No one tells you this. No one tells you that you will feel joy even if it takes a bit longer. That you will feel love. And passion. And all those wonderful and scary feelings you felt with your other kids. It is a joy that springs on you and leaves you breathless. Kind of like that feeling when you first see the person you love...that moment when the mundane becomes something spectacular.

Those who know me know I am a realist (some may say a cynic but we'll ignore those folks) so I am aware that we are very new in our journey with Jude. Many of the conditions I listed still haunt Jude's future. As I said before her challenges will be harder in some ways. But it doesn't matter because even if she never brought another moment of joy to us, the joy she's already given is a reminder that life is never predictable. You can never imagine that perhaps in your most fearful moment, the light might shine in.