Sunday, July 26, 2009

Emma’s 10th Birthday Bash

It was everything it was supposed to be. Candles, cake, presents. Emma’s got a bit of a summer cold or something; she was a bit subdued, but always manages to be the life of the party. Here’s the annual video:

My thanks and appreciation to all who gave us the better part of their day to make Emma’s birthday party a wonderful one for her and us.

Monday, July 20, 2009

Emma’s Birthday is Tomorrow

I remember it like it was yesterday. I can still see it. It took me about nine years and ten months to gather the courage to watch it on the screen. What I found was not what I remembered. It’s taken the other two months to sort out what did happen. It’s time I wrote it down. I’ve shared parts of this with others, but I’ve never really written it, for myself. My motive is not to make you sad; it is to take you on another part of the journey, with some perspective.

Dressed in my bunny suit and bouffant hat, I stood dutifully in the operating room, holding Vicky’s hand on her side of the drape separating us from the business at hand. I saw the smoke and smelled the smell of the cauterizing scalpel. I watched as Doc Williams pulled Emma out of the (gratefully obscured) field of surgery by one foot, into the air. Emma, moments before had been ‘breech’, with one leg cocked up over her shoulder. Low muscle tone equals amazing flexibility. She started to cry (Emma, not the Doc), and was quickly handed off to the assistants gathered about a warmer. That’s when I started up the camera.

Through the lens, I watched them clean her up, wrap her up, and she was rolled away; about two minutes. What I saw, watching it now, was three women; one picks up Emma’s foot, fingers her toes, kinda flopping her foot back onto the bed, they look back and forth at each other, and then get back to business. At a point between then and now, I’d have been angry enough to find out who they were and tried to get them fired. Emma was evaluated and dismissed within minutes of entering this world. Now it just stings. Looking back, I’m pretty sure that the Doc had had her suspicions, kept them to herself, and probably diagnosed her as she lifted Emma into the air. I’ve never asked her, although I’ve had plenty of opportunities. Doesn’t matter now.

I don’t remember what happened, exactly, next – the show in the OR was over, and I wanted to follow Emma to the nursery to record her first bath and checkup. At some point, I left Vicky and was directed to the Special Care Nursery. There was some cause for concern for her oxygen levels, or something. I wasn’t particularly worried, and headed over there with my camera. When I got there, and checked in, Emma was unattended in a warmer to the right of the nurses’ station. Having worked in there in the past, it was not an alien place to me, the atmosphere and hardware weren’t at all foreboding. I turned the camera on, secured the lens cap, and walked over and bent over to capture my daughter’s face. That’s when I saw her. Her eyes. I froze. This was the moment that I waited ten years to witness again. It wasn’t there on the tape. Evidently, I never pushed the record button.

Emma had Down Syndrome. No one had to tell me. I turned, and sat down at a round table a few feet away. I remember putting the lens cap back on the camera, turning it off, and then something happened that I have not experienced before or since. I saw a little blond girl, running into my arms. I was opening the door to our home, greeting her first date. Watching her drive off. Walking her down the aisle in her wedding dress. Taking a baby from her arms. A lifetime of expectations paraded in front of me in a matter of moments. It was a feeling of deep sadness that struck to my core. It was all gone. I sat there until the Doc came in and told me of her suspicions. I remember saying, “I saw.” I needed no karyotype.

As you all know, I have a little blonde girl who runs into my arms. I have learned that the majority of what I knew of Down Syndrome from what were then 20 year-old textbooks was wrong, but in those moments a lifetime had been lost. The next few hours and days were filled with grief, much of it fed by those around me who either knew nothing about our life ahead, or, in most cases, had no idea whatever to say. Some did and said some extraordinary things, and they hold a dear and precious place in my heart. Teresa. Cliff, the ex-steelworker who, when he saw me, said nothing; threw his arms around me and hugged me like there was no tomorrow (he is raising a granddaughter with CP). There were others.

Emma was born a little before midnight. About 10 a.m., the next day, I headed down to the cafeteria for something to eat. Into the elevator came an acquaintance, a psychiatrist. I told him about Emma, and he turned, looked at me with with surprise, and asked, “Didn’t you have an amnio?” It was not the reaction that I had anticipated from him, not then. In my exhausted honesty, more than any sort of practiced nobility, I said the first thing that popped into my head. “It wouldn’t have mattered.” I found out later that, at that moment in time, he was involved in a troubled pregnancy, struggling with his own decisions. Her reality precluded any pleasantries, or even any empathy toward me, the idea of her cut his sensibilities like a knife. This has proven to be the case with Emma: She requires you to deal with who you are; you cannot pretend, pretense means nothing. There is no denial available.

I can’t predict the future (I gave up on expectations some time ago), but I will not be surprised when Emma becomes a cheerleader. She’s sitting across from me now, negotiating her way through She may not be completely accurate, but she can be very articulate. Her sense of humor demonstrates an intellect that one can only experience to appreciate. In the realm of human measurement, she can be ‘less than’ and ‘more than’ in the same moment. We were told, on the second day, “She is more like you than she is not.” It was a comfort through a period of learning. It is a partial truth – the reality is that she is you. You just didn’t know it, before now.

Emma’s birth was an end, and it was a beginning. The end of every assumption I’ve ever had, with the possible exception of gravity. The beginning of a widening breadth of the experience of loss, gain, tragedy, joy, but most of all love. Seeing Emma through that lens, I began to see life through different eyes. This piece began, in my head, by wanting to share that moment with you, show you the video. That it doesn’t exist, doesn’t really matter, in the end. What matters is that you’ve been changed, know a wider world, and we share it together with love because of Emma.

The cake video and celebratory stuff will be coming, the party’s on Saturday. Sweet!