Monday, July 14, 2014

Operation Remove Ginger's Gallbladder

I have a whole long eloquent post in my head about this whole mess but it's not been still inside me to get it out. I know there's going to be a ton of judgment and I have to prepare myself for that kind of criticism. I'll save that story for another time.

Right now I am in a place where I need to ask for help. I started a Go Fund Me campaign:

H and I negotiated a price from the hospital of around 11, 000 and we're sent in the paperwork to see who much the monthly payments will be. We have to pay the surgeon up front, and while we can make payment arrangements with the anesthesiologist we can not get a reduced fee. All together this surgery is going to cost us around 13, 000. As much as it hurts my pride to ask for help, that is where I am. We have raised enough for the surgeon so far, and I'm hoping to raise enough to cover the anesthesiologist fee as well as the down payment required for the hospital. This will allow me to have the surgery as soon as we hear back from the hospital as opposed to waiting until we can bring these funds together.

If you can help, thank you so much. Please don't feel bad if you can't as I know so many of my friends are in the same place I am in! Feel free to share as I'm trying to get this out as far as possible. And of course we'll take all the prayers, good vibes, etc  that you can offer. Thank you again dear readers.

Wednesday, July 02, 2014

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. There was a time when this was incredibly difficult for me to comprehend as I am just the opposite. I tend to jump into one thing after the other--leaving one half finished project after another. Too often my own desires, and sometimes needs conflicted, greatly with Camille's, and for awhile it meant butting heads. Over time I adjusted my expectations, learned ways that we could both live the way that our brains are wired so to speak. I have never subscribed to the idea that parents must sacrifice all to their children but I have learned through time that parents must adjust their reactions to their children.  Thus I overrode my impulse to gleefully sign her up and went with my suggestions first.

Camille persisted in wanting to do trapeze even after the stipulations. We signed her up. She was in a class with two of her friends which helped in her feeling comfortable. Initially she did okay with getting up early (for a kid with insomnia 11 is an early class). 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 ostraziation and bullying often colors my reactions to my children's social interactions. I stifle my impulse to interfere, and long ago stopped giving them little suggestions to fit in. As long as they are kind they are allowed to be who they are.

Perhaps it's the nature of a class like trapeze that Camille was not mocked by the other kids. There were lots of kids who were quirky and funky. Everyone loved that Camille brought a stuffed Pokemon to each class to watch over the kids as they practiced. There was always at least one kid who admired Camille's Minecraft and Dr. Who tee shirts. No one minded that Camille dresses like a boy much of the time. After a fresh hair cut, 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 over stimulation, she would just go sit and cover her ears with her head down in her lap. Other times it was because the bar was hurting her hands and she hated the feel of the grip spray on 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 choose 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 totally 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. That those whispers would reach her ears. 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. I felt like I had finally earned her trust back, and of course I feared jeopardizing what we both had worked hard to build. But it was her choice, and one thing I have learned is that children are quite capable of making choices on their own. We just have to learn to back off and support them quietly from the side lines.

The day of the trapeze was rough. I had been in the ER the night before, and I think Camille had sat up worrying as she does for me. 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 if it was with more a grim sense of determination than genuine excitement.

As we got closer to the studio instead of growing more afraid, she began to bounce with excitement. She leapt from the van, skipped to the studio, and ran off to join her class before the rest of even reached the front door.

And when she came out to perform? She was shining. She bounded on the mats, her head high. She was breathtaking beautiful in her confidence and her strength as she swung up on her bar to the open notes of the song.  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 tuned to me let me know she knew it. After the show, parent after parent came up to me, saying "Your daughter's smile at the end of the show was the best." She had captured the perfect the joy of achievement, and the sheer fun of ariel dance. 

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. They made fun of her when she held her arms up in her puffy coat because she hated the feel of "fat coats". They ignored her as she sat alonr on a bench during recess. 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. We finally pulled her but I didn't learn even then. 

Instead I subscribed to the ideas proposed by groups like Autism Speaks...the idea that my child had a disease and I had to cure her. We never did anything extreme in terms of quasi medical treatment but I did try to make her social, make her  communicate in ways that society deems normal. I tried to stop her ritualistic behavior. I forced park days on her, and forced her to talk at said park days. I didn't vaccinate my fourth daughter because I was scared it might put her on the spectrum too. 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.  A 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. We learned to negotiate situations like park days something her siblings loved and she hated (she could bring a book and read). We learned how Camille could enrich her friendships, and I taught her ways to communicate her needs to her friends.  Over time, Camille changed. She was confident in herself and most importantly confident in her difference. She was bold and proud. Tantrums tapered off. Of course things weren't perfect. We still all got grumpy when we were ready to go and Camille had to spend 15 minutes with her leaving ritual. And I,m sure R wasn't fully happy at being vaccinated at two. So 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:

Thursday, June 26, 2014

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.

Tuesday, June 24, 2014

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.

Monday, June 16, 2014

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. 

Friday, May 30, 2014

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.

Sunday, May 11, 2014

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.