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.