Friday, December 12, 2008

one sweet day

One year ago, at 5:30 AM, with our first 3 children sleeping soundly upstairs, after an unbelievably fast one hour labor in a birth pool in our bedroom, sweet little Dawson was born peacefully into my hands. This is Dawson's story, but it's also my story, because he was the chapter in this novel I carry in my heart that made it a story of hope instead of bitterness. This is long, but it will tell you everything. (Or, you can skip to the end for some pictures!)

The story of how we got to that point, away from hospitals and ultimately away from a doctor or midwife, is another story entirely! Forced to leave a hospital and midwives I loved halfway through the pregnancy because of lawyers and businessmen trying to decide how American women should give birth, unable to get a homebirth midwife in an area where they were mistreated over a decade ago, I was faced with a tough decision and the first sign of what an EXTRAORDINARY pregnancy this was to be! Cade's birth was a c-section but Parker's and Macy's were uneventful Vaginal Births after Cesarean (VBACs) and after meeting with the head of Obstetrics, pleading my case and that of the other women affected, ultimately I was given the choice of unnecessary major surgery and all of its risks and despite the evidence of science, or being alone. I found myself thrust into advocacy and strangely for a while, the spotlight, doing an interview with the NY Post and eventually a segment on Good Morning America, giving authors like Jennifer Block a face to the struggle to improve maternity care in the U.S. all while doing my own prenatal care and becoming my own midwifery student.

One year ago I was both a mother and a midwife, fighting off the intense oblivion that comes with contractions so I could monitor Dawson's heartrate with a waterproof doppler, assigning Apgars, looking for any sign to jump ship and speed the 5 miles to the hospital while Matt took pictures and we both marveled at the wonder of not being in that place, tied to machines, told what to do, shouted at, coerced, lied to, decisions made out of concern for time and malpractice instead of concern for LIFE. In the end Dawson chose the birth he needed. There was no hushed silence as doctors suspected Down syndrome, there was no nurse to pull him away from me, it was just us. Joy. Us.

Dawson's one minute Apgar wasn't great, a 6 or 7 at best, his cry was strong but filled with mucous, typical entrance of a child with Down syndrome. I'd had 2 high-level ultrasounds during the pregnancy that proclaimed him "perfect" but the instant I lifted him from the water my mind whispered, "Why is his nuchal fold so thick?" and a distant question of Down syndrome raced through.

A visit to my former hospital midwives a few hours later had Dawson being seen by two obstetricians, one midwife and countless nurses. In the days that followed he was seen by his pediatrician and more nurses as we went about the usual round of newborn testing and began dealing with some jaundice. No one ever suspected Down syndrome. But my instinct would not let me rest and everyday that passed I found myself examining him, looking for other signs, and finding more and more ... low muscle tone, an abnormally large fontanel, a single crease across one palm, a deep space between his first and second toes. I had never in my life met a person with Down syndrome, but I was a good midwifery student and I could not shake this diagnosis from my mind.

On 12/17 we spoke with our pediatrician about our concerns for the third time, always brushed aside, and insisted he order karyotyping. That day was hard for me. I had checked one of his hands a few days prior for the single crease and found none, but that morning I remembered I never checked the other hand. I did, there it was, and I felt my diagnosis confirmed. I fell into grief immediately and as we waited the next 2 weeks for lab results, I alternated between that intense grief and hope, as others told me not to worry yet. Everyday we spent hours looking at his little face as he slept, debating whether or not we saw an extra chromosome there. By Christmas I had almost convinced myself he was "normal." The day after we received the results and Down syndrome was confirmed.

I know not all families receiving this diagnosis go through a period of grief, but I was a different person then, and I did. I was in anguish. I would hold that little boy against my chest and sob like I have never in my life, sob over what he would never do, over the burden I had laid on my other children, over how our perfect normal existence was shattered just like that, with this tiny little chromosome.

Oh how wrong I was.

You would not recognize that person I was. She was not the person I grew up as, the child that would lie awake for hours at night thinking of how many people must be sick, starving, fighting, dying at that very moment and vowing to grow up and stop it, the teenager that sat with tears streaming down her cheeks as bombs fell on Belgrade, not knowing then how that city would one day call for her. I was not the 17 year old girl who showed up to college in Washington, D.C., ready to change the world. That person was battered, heart wrenching for the homeless that slept on the doorsteps of the expensive shops across the street from the dormitory in perfect Foggy Bottom, infuriated by the privileged rich kids who walked by without a second glance, made bitter by the politicians she found herself watching in action, in committees where humanity seemed to die.

One event, one event sealed that girl's fate. Coming back to the dorm from class one night, finding nearly every student on my floor crowded around one window, laughing and shouting. On the street below, a taxi driver had just finished severely beating his passenger. Over a lost fare, an insult... I don't know. That girl I was was horrified and asked what her fellow students had done. Nothing was the answer. Nothing? These ones, these Honor Program students, these future leaders of our country... nothing? That girl I was screamed, she argued, she accused them, and they all defended and no one cared. They were scared of rushing down to the street to yell at the attacker and too involved in watching the scene play out to shout out the window or pick up the phone and call the police. And they defended their choice.

It was after that event I convinced myself that human beings would always hate, always fight and always act selfishly. There was no way I could help a world like that; it was hopeless. Soon I left my plans for politics, left that school, left that city. I stopped giving money to the homeless - I stopped looking at them at all - I stopped watching the news, I stopped reading the paper, I stopped caring. I became the opposite of that child I was.

Until Dawson. A few weeks after the diagnosis, the darkness I was in began to fall away, all because I loved him. Love was it, it was enough, and it was a process, a process of undoing 7 years of walls. Normal was a word, not a reality. He was not a burden to my other children but a light to guide them to be good people, a light they already recognize I think as I have never seen them so in love with a baby. Whatever else society wanted to call him, he was love, he was perfect. People could change, because I had changed. There was hope still. Finding Emerson, I found so many people doing so many kind things, they joined Dawson in chipping away at those walls.

That morning, holding that baby against me in the warm water, I never could have imagined where I would be one year later, not running from Down syndrome, from difference, from struggle but running toward it... what a year. What a boy. What a chromosome.

I know Dawson's life is much more than a lesson for mine. He has his own lessons to learn and his own story to tell. I just cannot believe I got so lucky as to get to watch it form. And today, tickling those legs that cannot walk yet, kissing those lips that don't say "Mama" yet, and brushing the hair on a head that might never be as "great" as the heads of those people in that dormitory room, staring out that window at injustice and doing nothing, all I can think is ... what did I do to deserve this gift? Where did I go right?

Happy 1st Birthday my Dawson, my perfect miracle, my angel.
You are so loved!

(In the belly!)

(In our arms!)