Silicon Valley Down Syndrome Network Membership

I Remember by Sam P

29 Sep 2011 1:42 PM | Anonymous

I remember the night my son was born.

I remember his dripping blood filling my cupped palms as my flowing tears drenched our faces.

I remember the nurses, prying his tiny body from my arms, crowding around him, blocking me out as they laid him in the transport crib.

I remember not knowing if I would ever see him again, and I remember drowning in morphine, then toradol, then fentanyl, then vicodin.

 What should have been one of the most joyous moments of my life become a living, yet barely breathing, nightmare. “Your son is a retard. He’ll never walk, talk or grow out of diapers. He may not even recognize you, and he is condemned to wearing brown polyester pants, button down shirts buttoned up to the collar, having a pudding-bowl haircut, buck teeth, a drooling lolling tongue and a stoop to rival the Hunchback of Notre Dame.”

What the neonatologist and pediatrician really said was “We think your son might have Down syndrome, and a major life-threatening heart defect. He isn’t getting enough oxygen and we need to transfer him to Stanford, tonight.”

I remember blanking out the bit about Down syndrome, focusing instead on the heart defect. I wanted to know everything about it. I’d lost a sister to a heart defect, and Down syndrome was simply not an option – certainly not with the portrait that I had painted.

For the next seven days, waiting for the specialists to unravel his DNA and confirm or deny an extra chromosome, I alternated between reassuring myself that he did not have Down syndrome, and hoping that if he did, he would die before I had to bring him home. If he died, I would get all the attention and sympathy for having lost a child, without the trauma of this desperately inferior imposter stealing his place.

This was not the Ben I had dreamed about these past eight months. The Ben I was expecting would have his father’s height and musical talent, my outgoing personality and blonde hair, his father’s freckles and intelligence to rival either of us. No. This ill, deformed infant was not part of my perfect family-to-be. How could we go camping and backpacking with this imposter? How would he learn the French horn, or play competitive basketball or scare me witless when he learned to drive?

I remember that the DNA test, his karyotype, came back as infallible evidence that indeed, every single cell of his body was permeated by the invading extra chromosome. Trisomy 21. It’s almost like the kid wasn’t human. With 47 chromosomes, didn’t that mean he wasn’t human?

I had been determined to breastfeed, but that was impossible, he was more than 40 miles away, I had been cut open like a pork roast and could barely stand to sit and pee in a toilet, let alone drive. The nurses brought me a mechanical breast pump. I guess they showed me how to use it, but I just ignored it, begging that the fog of pharmaceuticals and some sleep would bring me a new day and nurse’s apology that there had been a mistake – *this* perfect little baby is my newborn, that that other one. The next day I awoke to no newborn, no husband, no friends and breasts that needed milking. I was shown, once again, how to use the pump. My father arrived with a bottle of champagne and a video camera that was sent straight to Stanford to film the first of his generation in my family.  After four days at Stanford, on the day I was to be discharged, I bargained for his return to our local hospital.

The pump became my mission, my only focus in a world of desperation. What else could I do? At least I could pump, right? The kid needed breastmilk, and word from the nurses at Stanford was that he needed my colostrum, that liquid gold produced only by newly lactating breasts. I followed all the directions. I sat in the hospital cafeteria, weeping, forcing myself to eat the meals that I was told would make good milk. I pumped every three hours, round the clock. For three months. At least three months. I started to let down when I heard a lawnmover, or even a chainsaw. It wasn’t natural. It wasn’t normal. I remember yelling and hanging up on a nurse in the NICU who fed Ben from a bottle before I had a chance to try giving him a feed by breast. More than six years later, just two weeks ago on a chance meeting, that same nurse reminded me about that phonecall which I had forgotten.

And dammit, it was worth it. The kid did learn to breastfeed. It took a team of professionals, a lactation consultant, occupational therapist, breastfeeding support group and my mother to get there. But we did. Our house smelled like the inside of an old milk carton, and our freezer had enough milk to make quiche for an army.  But, I was still grieving the little boy I had lost.

I remember when Ben became my son. After three months, I said “I love you” and it wasn’t lip service. It wasn’t my duty and I wasn’t just trying to convince myself.

At six months, breastfeeding became a joy, and at ten months, Ben’s first success at sign language was one he invented, asking to breastfeed. We continued for two and a half years. My journeys of breastfeeding and acceptance and consummate love are parallel paths. Both began with duty and powerlessness and both ended with a pure joy that never ceases to amaze me.

Now, at six years old, Ben has been camping nearly every year. Our hikes are slower than they used to be. He tells me that he loves me, many times every day. He wears trendy clothes, has lovely teeth, and an exceptionally cute haircut. He likes to compete with his brother on who can pee the highest on a tree trunk, and he only sticks out his tongue to be rude. He doesn’t have his father’s height or musical talent, but he does love to sing and dance.

He can read and write me notes. He is more outgoing than I ever could have imagined. He has my blonde hair and his father’s freckles and an extraordinary type of intelligence that truly exceeds any I’ve known. You know what? When they used to ask Ben to feed a baby doll in those silly developmental tests…

Silicon Valley Down Syndrome Network

 SVDSN is a program of Valley Medical Center Foundation who is a 501(c)3 non-profit organization

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