Saturday, August 31, 2013

We're All Fine

Friday night. Camille is lying on our bed alternating between high pitched baby talk to Jude and excited too fast words about Minecraft to H and I. As usual, Camille is waking up just as the rest of us are going to sleep. I had been talking to H about why "the post formerly known as do we diagnosis Camille or not" was such a failure. Turning to Camille, who has paused for a second to snuggle into Jude's belly, I ask "Do you want to go to a Dr. to see if you have Asperger's?"

It's a moment because for all of my talk about allowing our children to be movers in their education, etc, I'd never really asked Camille how she feels about this issue. We have talked to her about Asperger's. When I picked up The Strange Incident of the Dog In the Night, Camille began to read it, and when I asked her if she felt like she acted like the boy she answered "Well yes except that I am not good at Math." (which is nto true, she's very good at Math). Lately Camille has been listening to our conversations about disabilities, and she has had her own commentary to add to the mental notebook H and I create as we think and debate through our ideas. And of course her thoughts are remarkably right on and very frequently more insightful than many of the adults I've read. But it's never come up whether or not she sees herself as having a disability, or whether or not she wishes she had a diagnosis. 

For the last 8 eight years, I've struggled with whether or not we should push for a diagnosis for Camille. I have always suspected that she might have something like Autism or Asperger's (I didn't EVEN KNOW what Asperger was until she was five and I meet our friends who have a son diagnosed with Asperger's). Initially, it was a struggle to get anything because her Dr. acted like I was pushing for drugs (which I wasn't for the record) and he told us "I don't think she has Asperger's because she shook my hand and looked me in the eyes. She's just quirky and in your family that's likely going to be okay." And I let it go because it was really really hard to push for a psychological evaluation if your family Dr. didn't recommend one. I wasn't sure if I fully agreed with the Dr. because while yeah she was quirky and that was totally okay in our world there were other things that just went beyond quirky. 

The tantrums, the social anxiety aka never wanting to leave the house and having meltdowns when we did, lack of social skills that were at the time rather painful for her, insomnia, OCD, texture sensitivities. These were things that were effecting her quality of life and seemed to me to be a bit beyond the quirky diagnosis handed to us.

But I doubted myself. There was a lot of talk at the time about how parents were trying to push diagnosis on their kids when their kids were just being kids. I admit that I started to worry that I was doing this...that perhaps I was hoping for some easy answer that would explain Camille to me. 

Meanwhile, we just kept living. We had started to home school again which made life much easier in many ways for Camille. After a few months of trying to force Camille to make friends, I stopped. I allowed her to sit in the van and read on park days, and I didn't pressure her to meet people when she got out to walk. That helped ease the meltdowns that often accompanied us leaving the house. We already kind of unschooled which gave Camille the freedom to pursue what interested her in as much (yes yes sometimes obsessive) detail as she wished. Insomnia wasn't too big of an issue since we didn't go to school so we could sleep as long as we wanted (and since I have insomnia Camille and I are often up together). We even worked with the OCD which seems to be worst when things are making Camille anxious. We've learned to schedule a little bit more time before we leave so Camille can perform her leaving the house ritual. And when things are really bad with the OCD, I know we need to sit down and chat about what's going on to worry her.

Yes, we are a quirky household but it really does work. We all have our things. I'm ADHD so we have to accommodate for this. We have to work around Umberto's med schedule. We have Jude's therapy, and perhaps some day other issues. Piper has anxiety attacks. R is a toddler. H has his shit too. We have all just learned to flow with the things that make up who we are. There are times when it's clear we need outside help and we seek it as it comes up. But a lot of times, I feel like we've learned to deal with things by just seeing them as normal as okay. We don't think Camille needs to be any more fixed than the rest of us need to be fixed. Camille is just Camille and yeah sometimes we all roll our eyes as we are waiting in the van for her to finish washing her hands but it's NOT weird to us. It's just life.

Lately, or if I'm fully honest since we got such a clear diagnosis of Jude, I find myself rethinking if we should be getting a diagnosis for Camille. If she needs therapy or wants meds for her OCD. I feel sometimes if I state that we are dealing with multiple disabilities I'm being a poser. Because I only know for sure that two of my children have something the world calls a disability. I don't know with Camille. I have my suspicions, and since I've finally found some great blogs about Autism, I've been reading more and seeing more of what I read happening with Camille. And of course I worry that she'll be upset someday that we didn't do more.

Thus on Friday night, I am sitting across from Camille asking her, for the first time, if she wants an official diagnosis. "No. I'm fine," she says, and goes back to telling us about her Minecraft experiences. Camille doesn't see herself as having a disability but then she doesn't see her siblings as having a disability either. As she says "They're normal to me." When pushed Camille doesn't seem to making distinctions between and abled/disabled. I am not sure how to read this because while it's clear she does see difference, she doesn't seem to regard that as problematic.

For now we will keep on as we have been. Camille is happy with her life as is, and that is a good enough place for me to be in. For the last few months, I have felt conflicted about  my blog being only about Down syndrome. I got caught up in watching my numbers climb and when they didn't I would feel depressed. The problem was that my numbers only climbed when I wrote about Down syndrome (and even then I wasn't going viral or anything). I was becoming known as a "Down syndrome" blog. I woke up to the yuckiness I had become a few weeks ago. I was staring to think of my family as something to sell aka what makes my blog unique? What is about us that could set my blog apart from the other blogs? Because that would drive readership right? Part of that realization came from thinking about Camille and about her diagnosis. If I was going to "sell us" I couldn't do it based on a gut feeling right? I realized quickly enough that the thought of selling us made me feel kind of ill. Up until this point I had covered my desire to feel valued (because it's always been about feeling valued not really about making money) with this idea that I was going doing something important and good in the world aka writing about disability. My insecurity strikes again. I had come to realize that I would end compromising what this blog has always been for me and for my few loyal readers. I wasn't willing to do this for fame, recognition, etc.

This blog has always been about my family, my life. It has not never been a niche blog and that's always been okay. My blog is not big, and it's not likely to get big. I'm never going to have the readership of say "The Bloggess" and that's okay (for the record, I adore her, and she is one of the few big bloggers who I feel totally deserves her fame). Like my family, this is blog just is. I write about all kinds of shit, put up pictures, rantings, musings, and often too much text for most people to read through. My blog is not a Down syndrome blog, not a Asperger's blog, not a Epilepsy blog, nor a disability blog. It's just a blog about one kick ass family doing the best we can in the world. And like Camille "It's fine." We're all fine. 

Saturday, August 24, 2013

The Myth of Girl Gender Bending

Lately, I've run across a lot of articles about boys playing with gender roles usually expressed in dressing up like a princess. These actions are labeled as boys dressing like girls, and I always smile a bit as I glance over at my girls who are not lounging about in princess dresses or plastic heels. My girls have never been over the top girly dressers although Piper has an inclination towards LOUD but that's never manifested itself into fancy dresses or tiaras. I admit that when I read these articles, and used them as a viewer of my own experience, I do roll my eyes a bit. The implication that playing with female gender roles must involve a tendency towards the flashy annoys me as it seems to just reinforce other gender roles.

But this article hit a bit differently. Here's why, this is just one comment that pointed to the same thing:

People tend to get a lot more upset seeing a boy dressing up in girl's clothing than a girl dressing in boy's clothing. Why do you think that is? Generations of social and cultural indoctrination is a good place to start. Maybe the culture doesn't care as much or have as much invested in what girls do as what boys do......

Is this really true? Certainly there is no denying the violence inflicted on men who dress as women or of the bullying these boys likely experienced. I would never dream of suggesting anything different. But are girls who dress as boys really socially acceptable? Are they really left unharmed? Uncommented upon? If this was the case why do these boys express their femininity through such "girly" clothes. Why is wearing pink, feathers, shiny sequins, etc the only expression of femininity being displayed at this camp? If girls are really able to gender bend why is there such volatile and hatred launched at lesbian woman who don't "look like" a woman?

How about this quote from the article linked above:

The couple passed a man they knew from the neighborhood who was standing with a group of other men. The men, commenting on the 23-year-old's masculine dress, shouted anti-gay slurs, calling her "dyke" and "bitch."

 Lately Camille has taken to dressing in Umberto's outgrown clothes. At the beginning of the summer, I began to weed out the clothes Umberto had outgrown. I had a pile of tee shirts to give away when Camille walked in to ask what I was doing. When she the giveaway pile, she asked if she could have the tee shirts.
"Sure," I said without even a second thought. After all girls get to dress like boys right? I admit I didn't pause where I might have paused if Umberto had decided he wanted to wear dresses. Pause not because I have a problem with it but because I'd automatically fear for his safety if he walked around in dresses. But I admit that I didn't think it would even be a problem for Camille. We were at a place, it seemed, where girls could be a bit edgier in how they dressed.

And then Camille got her hair cut really short.

And suddenly I became aware of how people looked at her in public. Because not only was her hair very short but she was dressed like a boy. Not like a girl wearing clothes that were kind of boyish. You know girly tee shirt or jeans with flowers embroidered on the pockets. She was wearing actual boy clothes. And she wasn't wearing earrings or jewelry to set off that cute short hair. As we walked through grocery stores or hung out at Barnes and Nobles, I started to notice the second glances, the confused looks, the pinched mouths when people realized that Camille was indeed a girl. 

It hit me quite strongly that girls are not allowed to dress like boys. It's not socially acceptable. Girls are allowed to wear things that were once considered boyish: jeans, tee shirts, even caps but these things must be remade into the image of girl. When a girl actually dons boys clothes with no subtle signs that she is a girl, it makes people uncomfortable, and I suspect it makes my sweet girl as vulnerable to bullying and violence as the boy who is wearing a dress.

Judith Butler suggests that "Gender is not something that one is, it is something one does, an act...a "doing" rather than a "being." I don't think that Camille has any desire to be a "man" or that she feels displaced in terms of gender. I do think that she hates to be boxed in by gender roles, and that because she likes skulls, skateboards, and darker things she is more inclined to like "boy's" clothes. Her clothing choice, I would argue, is a reflection of how her interests as opposed to a statement about her gender. I think that perhaps Camille experiences her gender as something that is fluid, and changing. I have asked her if she likes being a girl, and she just gives me one of her haughty looks as if to say "What kind of question is THAT?" She refuses the meaning of that question. When asked if she thinks she might like girls better than boys she replies "I am ONLY ten. I don't know WHO I like yet."

H and I have not set off to raise children who automatically challenge gender roles. I dressed my girls in pink and Umberto in blue. We didn't hide their sex from our friends. Nor did we cross dress them as young children. But we also never suggested to them that there were certain ways boys or girls should look. We allowed them expression in how they wanted to dress. We tried to emphasize that heterosexuality is not the only option or even the normal option in our society. We did make a conscience effort to raise human children who value compassion, love, equality, etc. And because we were both influenced by Butler as well as other great feminist thinkers, we likely imparted this idea that gender is fluid onto them without even trying.

I think we have a long ways to go before we see gender as fluid. And I think that the idea that girls can dress as boys is, frankly, grossly over exaggerated. I also tentatively wonder if we place too much expression on our children's desires to wear clothes that not fit into the gender norms. If we read too much meaning into these action, do we risk making perpetuating gender stereotypes. I wonder, often, what a world in which gender and sexuality are seen as malleable creations, would look like. What liberatory possibilities might emerge if there were not such as thing as "boy" or "girl" clothes.

Monday, August 19, 2013

One Plus Forty

Yes, gentle readers, it is time for the birthday post. This year I actually make it on my birthday.

I woke up this morning, and thought again to last year. Last year when I turned forty and didn't even make a post because I was still struggling with fear and hope. And this year, I woke up, to the soft rain on the roof, the delish feel of Jude. She's all hope, no fear. I didn't even open my eyes, I just held her against me, and then R curled up against my back. This morning I just let myself soak up the joy.

What a year forty was.

I've been trying so hard for so long to just let myself love life. To accept the good. To be happy. I'd often feel like I could lay my hands on letting go but then I'd allow something to derail me. Because really I was still scared to be this happy. My first thought when I found out Jude had Down syndrome was "See this is what I get for being happy." It was an incredibly stupid, ungrateful thought since I wanted Jude so very much. But I'm kind of glad I had it because once I held that baby in my arms, I knew how incredibly stupid it was in a such a way that it shattered through the last of my hard shell. Jude was our completion to our joy, to my joy. I realized that there was nothing to fear, that I could let go. Something inside me  healed in those early days with Jude. I felt complete. Finally.

These days life has a new tenor. Not because Jude taught me some lesson (my children are not vessels for my growth). No it's more that because I had to go through so much garbage tossing in my own head when I was pregnant with Jude that I really emerged from that experience, transformed. Today, I laugh easier. I am more comfortable in this skin, this body. Sure I still feel down sometimes. I still explode a little more than I'd like. But I also do little things like ham it up for the camera. It's a lot easier to coax a smile from me. I've finally stopped worrying about the other shoe dropping, and I'm falling back into this life.

The last birthday post was about my struggle to write out my future. All that I had defined myself on was gone. I had not gotten into a Ph.D program and I was bitter. Unsure of what I was. My whole life had been defined as being "academically gifted." I was supposed to do "great" things. And I really thought that I had failed miserably. I spent the first year and a half in Athens, deeply depressed and somewhat lost. I was trying to be happy. To re imagine my life.

Today, I am happy with where I am. With what many would see as an average life. It's a good life. A beautiful life. Filled with joy. Beauty. Love. Laughing. I wouldn't trade this life for a Ph.D. I still don't know where I am going to go with my life. But it's okay. I am happy writing here to my small audience. I am content with working on my short story collection, quietly. I don't even fantasy too often about publishing those stories. I'm thinking about learning to quilt which is something I've wanted to do since I was in my early 20s. I'm playing with my knitting more, branching out. Same with the photography, and taking a cue from my kids it has more to do with love then with career or fame. This is a new feeling. A good feeling.

My birthday was simple. Waking up surrounded by the softness of my babies. A lovely homemade card from H, and then a surprise of flowers. All after a wonderful weekend with my mom. A night out with my husband complete with a surprise punk show at the Common Market. I made fried green tomatoes for the first time. We ate more cake. And now I am here, writing in one my favorite places. Surrounded and buoyed by so many birthday wishes. My life is average and not average. It is average perhaps in the way we too often define success but it is extraordinary in the love that surrounds me from so many places. Thank you all for making this old girl feel so special.

Friday, August 16, 2013

Fruits of Labor and Stuff

Umberto turned 13this summer. We pulled him out of school for the final time when he was nine. He still wasn't reading much, and he seemed to be so far behind academically that he would never catch up. But he was also unhappy in school. He wasn't catching up either. I was told by a couple of teachers that his problem was simply that he had a low IQ and that my desire to make it something else was wishful thinking. And I just realized that if I left him in school that he was going to be ground down and destroyed. We pulled him because, really, we had come to realize, this shit just didn't matter.

"Why prepare our kids to hate life?" H said as we lay there one night discussing what we should do.

And for the most part, I was able to let go of the fear of him "succeeding." When I started to feel scared, or worried, I remembered swimming. How they all learned to swim by playing in the pool summer after summer. By watching their father who is an excellent swimmer. I remembered sitting under the darkening sky, as the pool lights flashed on, sending ripples of light over the water, as their smooth bodies dove again and again beneath the shining water. How they swam with such confidence and such grace. They had not needed lessons. Yes they lacked precision, and professional polish. But they didn't want to win a race, or prove anything to anyone. They swam because quite simply they loved to swim.

[Later on, this holding of memory would serve me as I struggled with not being accepted into a Ph.D program. I would remember that perhaps we should do things for love not for fame, not for recognition, not to get ahead, not to get a job. That, though, is another story for another time.]

A couple of years ago, H and I did start to have conversations with Umberto about his future. His goal at 11 was to work at Gamestop. A dream job to a boy who loves his Xbox. I admit to trying to push a little towards game design or some such career. But he was resistant to that direction of conversation. A few times he said "Yeah I'd like that...I'd like to go to college" but when we tried to work with him on college prep material, he was not interested. We would fight. Frustration would set in, and I would remember the swimming. I would remember how we once tried to pressure him into being on a swim team and how for a time his love dimmed. So I backed away.

This summer we assured Umberto that we would respect any decision that he made with his life. I had been doing a lot of re [thinking] about success, intelligence, etc. I had to reevaluate my own priorities and expectations. So much of my insecurity derives from never feeling like I'm good enough. There has been too much sadness over the things I thought people expected me to do and too little joy over what I already had achieved. I realized at some point, that I often did things not because I love them but because I thought that these were the things expected from me.

And Umberto announced to me one day, "I want to go to college." And he didn't let it go. He made it clear that he wasn't sure what he wanted to do in college but that he could see that as a goal someday. We talked about some different curriculums, and books to read. Umberto loves history and science. He started talking about writing game ideas down, and he loved how he could work history into those ideas. He wants to work on writing fiction--something I never expected from him.

Each morning he gets up, and he's ready to work. He's getting things now that he didn't get last year, and things that left us both in tears, he sails through. Today he was reading to me some interesting (aka gross things) he had learned about cells, and said "I'll have no problem writing about the interesting things today." And I said "You know Umberto whenever you find something really interesting we can put this other stuff on hold while you pursue it." He looked at me and smiled "I know."

Monday, August 05, 2013

The Burden of Goodness

“I hate to hear you talk about all women as if they were fine ladies instead of rational creatures. None of us want to be in calm waters all our lives.” 
― Jane AustenPersuasion
I used to call Piper my sweet beastie. After all Piper was the one who smiled at everyone. She loved to cuddle and hug. Piper was the one who could be counted on to share, to be kind, etc. I never stopped to think about the consequences of labeling her because these qualities were after all wonderful. Societal approved. Especially for a girl. Despite all my theory, all my feminist thinking, I got caught up on approving these things in Piper.

And then Piper started exploding.

It started with preschool. We enrolled her in a little alternative preschool near our house. She was acting lonely and depressed since we were attempting another year of school for the older two beasties (that failed as well but that's another story). I thought maybe being around some other kids would be good as Piper seemed pretty outgoing and friendly. "She was an 'extrovert'," I thought and she needed other people. But at school, she was sullen. She would angrily refuse to talk to other kids. We were shocked and dismayed. This wasn't Piper at all! We started to worry that there was something "wrong."

But was there really anything wrong? Is it wrong to not want to be friendly all the time? Maybe it was the other kids and not Piper. We realized after some conversations with Piper that she was being ostracized by the other kids. In fact, there was one girl who seemed to be actively building a case against Piper because Piper wouldn't be bossed around.

The explosions continued at home. Piper displayed a ferocious temper when shit pissed her off. She was impatience and ornery. She was bitchy and crabby. But she was also sweet and loving. She was the first one to hug you when you were sad just as she might be the first to explode at Rowena who was having yet another tantrum.

You see, it's simple, Piper is human. She is a constantly becoming person. Morphing and changing daily. She like all humans displays a full range of emotions. And I suspect that being boxed so openly by me, and others, created a perfect storm of frustration. She had to kick out and stretch her wings, let us know that she was more than a sweet girl. She was also a fierce girl. An angry girl. A girl who knew what she wanted. This doesn't mean she got to express these things however she choose to. But it did mean that she was allowed to challenge the definitions set on her. We had to open the possibilities of what it meant to be Piper.

As a female, I believe it is vitally important to encourage my girl beasties in the complexity of becoming that is all to often only given to white, middle class males (and yes sometimes females but not as strongly or as often). I don't want Piper to be the sweet little girl all the time. That's narrowing and limiting. It crushes other emotions that have value and importance. A little outrage is a good thing when protesting injustice. Just like a righteous anger over discrimination can take one a long way towards the betterment of the world.

This has become something of an important idea for me now that Jude has come along. I've been recently engaged in conversation about positive stereotypes, and I've attempted to argue why they are problematic for me. What is wrong with people with Ds as being seen as kind, empathic, loving? Well nothing if it's acknowledged that they are also not always these things. I don't want Jude pushed into any kind of box. It seems that the world sees her as either not worthy of life or as a perfect angel sent from God to spread love and light. Where is the room to be human in those extremes?
“Once you label me you negate me.” 
― Søren Kierkegaard
We seem to hold onto the positive stereotypes as a way to counter the really awful shit out there. And just go read the comments on articles about Ds if you want to see some of that darkness. However, I am not convinced that turning to a glorification of what we see as Ds is really valuable either. It denies people the ability to be fully human, fully complicated, fully able to fuck up, fully able to be angry. Jude deserves to be a complex human being. She deserves to have someone snap at her in frustration, "I don't get you."

Because the thing is these stereotypes are just as denying of the humanity of my child as the negative stereotypes. Frankly, they're also just as dangerous. We see what happens when people of color, or women or gay people don't act like the positive stereotypes. They are killed. Yeah, I know it sounds dramatic but think about it for a few minutes. Trayvon Martin was wearing a hoodie. He had smoked pot. There was a picture of him flipping off a camera and sadly to many people this was good reason for Zimmeran to kill him. Yet, I've done all those things and no one has proposed I shouldn't do them in order to be safe. Ethan Saylor wasn't acting like a sweet little angel when he was at the theater and he ended up on the floor, dying. Antonio Martinez was wearing a hoodie, hiding his face, trying to escape what he saw as a threat. He wasn't smiling, hugging someone, being the chromosome of love. He was beaten with a police baton. What about our adult children who are raped, abused, starved to death? Where they acting like a stereotype? And if not did this give people the right to see them as not worthy of life? It's worth considering.
“I think fitting in is highly overrated. I’d rather just fit out... Fitting out means being who you are, even when people insist that you have to change. Fitting out means taking up space, not apologizing for yourself, and not agreeing with those who seek to label you with stereotypes.” 
― Golda Poretsky
I think that the point of all stereotypes is to place people into categories. And categories are too often limiting and confining. As someone who has been categorized: white trash, high IQ, ADHD, female, fat, I have felt to some extent the sting and limitations of such things. I have struggled much of my life to be unafraid of my voice, and of my own emotions, thoughts, etc. I have known the sting of rejection because I was an "angry fat woman" when the expected was to be jolly and complacent. I have been told often that I am too angry. Too angry according to who or what? I am guessing the categories that suggest that anger is bad because I am a woman. Stereotypes are designed to keep us in our place and how that can be seen as positive I do not know.

In addition, stereotypes of all kinds enforce an idea that we are "essentially different" by suggesting that some of us as a group are biologically different. While I am a big fan of being different, of fitting out, the problem is that we narrow difference to a range of characteristics that can be linked to biology, we open up the conversation for an inclusion of negative stereotypes as well. We suggest that the difference which might exist between all individuals is a difference that is really about groups of people. If you don't question the danger of this take a look at Nazi Germany. There are many research articles about this. Here and here for example.

What it boils down for me is that I want Jude and all my children to be able to take up space as humans not as categories. I want them to not feel limited by the negative or positive stereotypes out there. They deserve like we all deserve to be able to experience a full spectrum of humanness. Jude doesn't need magical thinking to be a human deserving of life and love. She shouldn't have to ever worry about her safety if she doesn't act like a stereotype. She should not be limited because someone has decided she has a biological difference that limits her expression. The difference that I want for Jude is a difference that comes from breaking out not  from being reined in.

Thursday, August 01, 2013

Nursing Jude

As of the writing of this post, I have nursed for a total of 10 years and give or take a couple of months. I suspect I have another couple of years nursing to go. I'm a pro, I suppose you could say. My friends in Charlotte joked that there's not a one of them who hasn't seen my boobs. I have nursed in cars, on planes, in more Barnes and Nobles than I can count, in various coffee shops, all up and down the East coast from Maine to Georgia. I've nursed in another country. I'm hoping I'll get to nurse in Cuba next summer. One could say that nursing has become a way of life, a way of marking time, of remembrance. Indeed as I flip through my pictures, I find a picture of me nursing each new baby. All except for Jude. I am not sure why this picture does not exist. I suspect because she came so fast, and H and I were both concerned about other things...she did nurse though. Right away. Right after they laid her on my belly and our eyes meet, I nursed quickly before she was whisked off to be examined. And that bit of nursing was an important piece in what was to come.

When we found out Jude had Down syndrome, I worried that I wasn't going be able to nurse. It became a kind of focal point for me. It held all my hopes and fears. If I could just nurse, Jude, I would feel close to her, I would love her, she and I would be okay. I know it sounds silly but breastfeeding has always held a special intimacy for me. Lying next to a baby, wee or big, and having them so close to your body, feeding them with your own body, the smell of their hair in your nostrils, the feel of tiny hands, and then the soft weight of slumber against you is one of the greatest pleasures in life, I think. I feel during those moments that once again these babies are connected directly to me as I felt when I carried them in my womb. The thought of not having that with Jude weighed on me because I already feared that she would be too different from me (silly thought I know). I kept thinking "If I can just nurse her, it will be a sign that all is going to be okay."

There were of course the many benefits of breastfeeding that I wanted for Jude as well. And it seemed like these benefits were even more vital for Jude. My milk would give her extra protection against infection something she was more prone to because of the Ds. It would be easier for her to digest again important for a baby who might have digestive issues. It would train her mouth, jaw, and tongue making them stronger which would help her with speech as she grew older. And these things were important of course but for me it was really about having to create this intimacy between us. An intimacy I so feared we would not have.

Jude's latching on right after birth was a bridge. Seeing her latch on, feeling that warm, new body against me made it very clear that Jude was not really that different from any of my babies. When they finally brought Jude back to me, I immediately latched her back on and started to cry as she hungrily nursed, looking up at me with those beautiful eyes. Jude was mine, and her feel on my body was a brand. We belonged together she and I. 

When we had some troubles, I started to panic. There was no way I could let go of this lovely bond. The nurses were freaking out about her weight, telling me that babies with Ds usually couldn't nurse, but I knew better. And thankfully, the support staff at the hospital knew better. A feeding specialist and a lactation consultant fought for us. They showed me how Jude's palate was higher than a "typical" newborns, and gave me some tips for getting to latch on properly. Later our crusty old Pediatrician championed me through a down turn in weight loss. My husband encouraged me gently to not give up. My friends sent me messages of support. A lot of people believed in us and kept me afloat despite my doubt.

And now here we are nearly 8 months later. Still nursing because a baby with Down syndrome can nurse. Not always but for us, yes. I fall in love with Jude over and over everyday. I love to lay down and nurse her. I love the way her tiny hand reaches up to touch my face. I adore the feel of her plump body molded against mine. I love how she giggles with a mouthful of milk if I smile at her during a feeding. Jude is indubitably mine and when I breastfeed her that is clear to me. There is no great difference between us. We are flesh of flesh and bone of bone. I am hers as much as she is mine. Having this link, the same link that I held with each of the other beasties, is important because it marks Jude as us. 

My love for Jude is in the act of each nursing session. It is in the intimacy of one body feeding another body.