July 13, 2014

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The moment my first son was born, I remember the world I knew rushing out, rather like the  one one trillionth of a second after the Big Bang in which the universe began to grow outward in all directions and went from nothing to infinite. The life I knew had gone forever and a new life came at the same moment in its place. With a bright red scrotum.

There was the pregnancy, there was birth, and then there was that bit that they don’t talk about in the birthing classes and the pregnancy books: mothering. It sometimes seems a little bit
like an inconvenience to have to deal with that, especially if you’re inclined to like to dwell on the pregnancy and birth part — so womanly! So MAGICAL! But the thing is, those parts END,
and the mothering (if you’re lucky) does NOT. No book will tell you what to do when your younger son wants to play with your older son’s penis in the bath. Or how to patiently explain to
your three year-old why he may not smother his brother with a pillow. I felt kind of thrust out of the warm, nurturing woman tent at those points. Every parent has to figure it out his or her own way.

There is this, that you know, if you are a mother. You are a member of a club—yay! A club they can never kick you out of.

You are a Mom.  Important.  Beloved.  Cherished.  Needed.  Purposeful.

I felt all this in the years after my first son was born.  And then I got pregnant again and I also felt a host of other things that put me in quite a different club.

I was told, after my 15-week quad screen came back with a very high risk of chromosomal abnormality, that there was a 1 in 2 chance that my baby had “Trisomy 21, Trisomy 18, or Trisomy 13.”  All the little trisomies; the first of which was familiar to me from my college biology class, the diagnosis otherwise known as Down syndrome.  I remembered my college friends Chris and Peter, who also took that lecture class, inventing a game show like blackjack where the pregnant mom is told (game show announcer voice) “You have 21!!!!”  Their increasingly exaggerated voices played back to me in stereo during the following months, as I anticipated the birth of a child with Down syndrome: driving my son to daycare, sitting in the dim light of yet another distant ultrasound room, waiting for another specialist with an ever-more-complicated-to-pronounce kind of job, another procedure.

This time the universe changed more slowly, more imperceptibly, like the inexorable movement of the moon around the earth.  The moon had the face of a child with Down syndrome, and he followed me from the grocery store checkout counter to the 6 o’clock news, the turnpike rest stops.

I did not attend the birthing classes, the pregnancy circles, though I am sure I would have been welcomed.  I ceased to read the books, because whenever I checked the glossary for “Down syndrome” or “special needs” it never went further than to mention the risk and ways testing could detect it.  I did not consider a home birth, as I knew I should be in a hospital when Patrick was born.  I didn’t put pictures of my belly on Facebook.  When I was pregnant with George I was joyfully awaiting a baby, and with Patrick the world seemed to think I was giving birth to a Eugene O’Neill play, a bleak future of a miserable family.  I cried to my husband at night about the woman with her grown son in the grocery store, always together.

But I had a secret that I didn’t even let myself in on fully.  I kind of think of it as our secret, Patrick’s and mine.  I still thrill somewhere to think of it, because it seemed like a transgression, a taboo: I loved this child, I wanted him, cherished him.  After leading a life focused on achievement and always measuring myself against the world’s arbitrary standards, it felt kind of just right to accept this child, this change.  Yes, thank you, I get it, haha.  Yes—me, ok.  I get this kid.

I knew Patrick was going to be ok, the way you know that you are loved when you are a child.  I knew it deeply and incontrovertibly.  Not merely ok but great.  In a world that values the capacity for success and achievement over a capacity for connection and love, a value system I had lived by even while it caused me pain, I was choosing to have a child who would likely not achieve anything I deemed important and valuable.  Many people did not understand my choice.  It was all right.

My doctors had said I would deliver on August 3rd.  But, as with so many things about Patrick, the world outside was wrong.  I had thought I was pregnant a month earlier but bled a bit and tested negative. The doctors said I was about four weeks pregnant in November but I was in fact eight weeks along.  It turned out the baby was testing small because of Down syndrome.  In early July we decided to take a short, last-gasp vacation to Cape Cod.  I furiously cleaned the house before we left, and insisted to my husband that he thoroughly clean the car—peak nesting signs—before we set off.  I made sure we had the address of the hospital programmed into our GPS.  Somewhere I knew but I didn’t let myself in on it.   That night I asked John to drive me to the hospital as I wasn’t sure but I thought I might be having a baby.  “Could be a kidney stone,” I said to the doctors at the emergency room.  One examined me and said, “You’re eight centimeters dilated and you are having this baby in about half an hour.”  I cried, out of shock, and an hour and a half of pushing later Patrick came out absolutely beautifully, crying and wiggling, and I like to think laughing at the anxious obgyn and pediatrician, awaiting a Down syndrome baby from a crazy mother they didn’t know from Adam who went on vacation despite being clearly about to give birth.

Patrick was a great feeder, a prodigious sleeper, and everyone loved him right away.  He is 20 months plus now, robustly healthy and unceasingly good natured, as well as naughty and destructive as any toddler.  There is a certain chair in our living room that when he sees me sitting in it, he ambles with his rocking gait right toward me, making his personal sign for me—his hand over his ear and his head cocked to the side— and lifts his arms to be lifted onto my lap, where he rests his head on my chest, then looks up at me for a long time, patting my face uncoordinatedly with his little hands, as if to say, “It’s ok, Mommy.  You’ll be ok.”

The night before Patrick was born I ran through the waves of the Atlantic, feeling at one with myself, a tiny creature swimming in a vast ocean without, and my baby, making his inexorable way through the perhaps vaster ocean within.

 

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