the morning after abacus' birth, we went down to visit her. the neonatal ward is stiflingly hot and danielle still in a wheelchair and recovering from intensive surgery, got overheated and dizzy while we waited for the dr's to examine abacus, so she had to go back up stairs.
I went back down and the dr asked to see both of us, but danielle was just not up to it when i told her, and she was upset wondering what might be wrong with abacus.
I went back down and waited in a room for the doctor to come, a nurse stayed with me and was asking me mundane questions about my life, trying to keep me distracted, i just wanted her to leave me alone, my head was busy sorting through every possible scenario. It took about 45 minutes before the specialist came in and told me that there were some facial features he had picked up which were consistent with downs syndrome and they wanted to run a blood test which would take 24 hours to process.
my head was spinning. it made no sense. we'd planned to have kids young to avoid this, the ultrasound test had said we had a 1 in 4500 chance of this happening. I was numb walking up stairs to danielle with the nurse, who I had agreed should come up with me.
Mum and Danielle looked so happy when I walked in and delivered the news which left a nauseating numbness through me. It was probably the furthest thing from our minds when she was born, she was just supposed to be small, it seemed impossible, a bad dream.
The doctor came up a bit later to talk to us both, and gave us a few glimmers of hope, which i would at times grip tightly to over the next 24 hours. there was a lot of confusing tides and undertows wrenching my thoughts between hope and and down into the depths of its opposite. We knew how we would react if the news was good, but no idea if it wasn't.
we isolated ourselves for the period of time we didn't know. It was the most stressfull emotionally exhausting time of our lives and i would wish it upon no one. The few visitors we had were social workers and our midwife Willow and the doctor who first picked up abacus' slow growth. He was sweet to take the time with us, Willow knew him and had sent him up, and he maybe gave us a few more shreds of hope to float upon.
one thing that kept going through our heads was not the obstacles she would face from her own shortcomings, but those she would suffer from the shortcomings of those gifted with the all the faculties to know better. We wanted to go somewhere where she would never know of the world she may never understand, live on a ranch in costa rica, in some simple understanding of life. (this is all written as best as i can as how it happened, and the views we held early on were not ones we would embrace later)
and my thoughts would tug continuously to hope, and how it would feel to be told they were wrong, the party I would throw, the things i would buy without reservation, how I would write about it in the blog, and then the dread would bubble up again, telling myself to stop kidding myself. and danielle asked of all the social workers and doctors and nurses and midwives, all of the questions i wanted to ask but didn't know how, unashamedly telling them her feelings and questions and beliefs.
we had asked mum to go so we could be alone. but later in the day, after we had held abacus for a while, i got a text from her just before visiting hours saying "don't be mad at me but I couldn't leave without seeing her again" i asked where she was and she replied "down stairs in the toilet" at first i thought she had stayed there for the 4 hours that had elapsed, but she hadn't. after a visit she went on her way. i think she was scared we would reject her but we'd already fallen in love with her.
I caught a glimpse of the news, obama was leading, i didn't care a bit, though those thoughts had previously consumed me.
they allowed me to spend the night in the hospital in a push out bed next to danielle, so long as i didn't walk around the ward in my undies or naked. we didn't sleep.
as time passed without break into morning I think i had grown more settled in the fact that the test would be negative. Willow came by and said she'd talked to Simon and that he'd said they often run the test and it comes back negative. I told her I didn't want to think that way, but I was secretly indulging in it.
After expressing milk with a syringe for 20 minutes, for about 5mls, which then we thought was awesome (and it was) we decided to go outside, something we hadn't done in a few days. Atmosphere felt nice, the pale warm sun and the wind and the smell of the air.
Then we went to see abacus, there were people fussing around her and soon after the doctor and Simon came to get us, earlier than we had expected to take us to a room where my anticipation of the negative test was crushed by the words "I'm afraid there's no easy way to say this . . ." Simon went on to tell us how big hearted and lovely downs syndrome kids are and the support we could get in Wellington. He did his best to tell us everything with a sympathetic smile that conveyed a sense of hope for our predicament. Then they left us alone to cry and digest those bitter words.
It felt impossible to connect things. To draw coherency between the anticipation of birth and what we faced now, as if we had walked through a doorway into somewhere else and I craved to just as easily walk back. The anticipation of hope somehow lingered as though this hadn't happened, as if we were still waiting for them to tell us the good news. Or that we were still somehow waiting for her to be born.
And we anticipated how to continue with the life we had, how much would change, what would we have to give up.
We returned to our room and began the process of telling everyone, phone calls and texts went out and were answered and soon our room was filling with friends and support, who had only concern and no sense of tragedy in their faces.
And danielles mom knew none of this. She had boarded a plane before we knew the test was even being done and was about to arrive any second. When she called the ward from the airport she was saying she didn't want to go straight to the hospital with her bags, when danielle bluntly replied "Your granddaughter has downs syndrome so just come to the hospital". And soon she arrived.
Our friends reactions to this have been the most theraputic, calming and settling influence in this time, and it is the love that i get from them that chokes me more than the news we were given. It has been the most loving moment of my life. And I want to thank you all for that.
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