This is a very sad, indulgent, dramatic, dark story. Read at your own risk.
If I'm going to have a blog, this story had to come. I had the "assignment" of writing it for my therapist. I'm doing some short-term therapy to deal with what he deems "traumatic grief". How personal. But if you're still reading my blog, you already know most everything. You've heard a lot of this before; some of the exact same lines, in fact.
I find it interesting that this time period, the period you're about to read about, has been the most difficult to process. Not the diagnosis. Just this 16 months of time when I watched my life from another place, another dimension, somewhere, maybe even from the sky. I underwent a metamorphosis. Not one of a caterpillar changing into a captivating butterfly. Instead, I was like a cicada leaving its shell behind. An exact replica; only empty inside.
And when the music comes to us
With its heavenly beauty
It brings us desolation
For when we hear it
We half remember
That lost native country
- Anne Porter
I am haunted by a photograph. It is a picture of me in the nursery eight months pregnant, arms cradling my belly, proudly smiling beside the crib we had put together that day. Seventeen months later, October 2th, 2007, our son Lucas was diagnosed with Williams syndrome, a rare genetic disorder.
The pregnancy wasn’t typical; there were small problems throughout. Half way through the pregnancy he was diagnosed with intrauterine growth retardation (IUGR). But everyone kept saying it was all fine. He would be fine; some babies grow better on the outside. The last three weeks of the pregnancy I was going to the OB twice a week for “non-stress” tests to monitor the baby’s heartbeat during contractions; to see if the baby’s heart could “handle” contractions.
At 39 weeks, I was in for another stress test. My baby didn’t pass. My doctor’s nurse escorted me across the street to the hospital. The doctor had just told me we were having our baby that day. I called Chris at work, panicked. I called him again while he was rushing to the hospital. Crying because I had just been told I would be having an emergency c-section. I’d never even considered a c-section. The doctor (not mine) crudely asked “did you really think you would have a normal delivery with this baby?” Well, yes. Yes, I did. Chris barely made it in time to see Louie born. Full term, 4 lbs 14 oz.
In a haze of morphine, in a room of sterile equipment and blue paper sheets, the woman that had stood proudly in the nursery a month ago left. She went to a place where the broken go; a place where streets of coal were littered with trash, pills and bottles of red wine. The date of her departure: June 6, 2005 at 4:02 p.m.
Oddly, she could still see the scene play out below. As though she was sitting above it all, watching a horror movie without an ending; a movie that kept looping, playing over and over. From above, she watched, as her tears fell down and mixed with the rain falling on Vanderbilt Hospital as her son was rushed to the NICU.
I wish I could go back to that moment after his birth and gather her in my arms; that ghost of myself, for I knew she would never return the same. I would have held her tightly. I would whisper warnings in her ear that her heart would soon be shattered into a billion pieces. I would let her know that she needed to hold on while her life whirled around her and reassure her that when it settled, she would find the person taking her place would be much more sensitive, compassionate, and in a way, more alive. But in the meantime, to brace herself and brace herself hard. And to beware of the temptations of covering the pain with the vices that sat beside her on a dark cold road of coal.
The desperate mother took her son from doctor to doctor, from test to test, from needle to needle. They drew blood from a vein in his head since his arm veins were too small. The blood seeped into his white-blonde hair and dripped down his face.
From pediatrician to pediatrician, there were no answers. The endocrinologist gave us hope that maybe it was simply his hypothyroidism and that he would “catch-up”; that maybe he needed growth hormones. Another hospital bed. Another needle. Another test. She cried at every visit. She knew the staff thought she was insane. But she knew also there was more than a thyroid problem or growth hormone deficiency.
Louie wasn’t growing. Everyone celebrated when he gained two ounces. People bombarded her in places like Target asking why he was so small. Or guessing his age, “oh, is he 2 months?" “No,” she would reply. “He’s 7 months.”
She breastfeed, she bottle-fed, she used contraptions taped to her breasts to supplement with extra milk while nursing. The pediatrician recommended cereal earlier than a typical child would eat it.
Finally she found the right pediatrician. He suggested it was time to see a developmental pediatrician to look at possible genetic disorders. Genetic disorders. She had never considered a genetic disorder (looking back, I'm not sure why...it seems so obvious) and so she spent the night researching every genetic syndrome. That is when she found Williams syndrome and she knew. And her husband knew.
She called the nurse the next day, sobbing that he had Williams syndrome. She was dismissed. The lunatic mom strikes again?
The family visited the developmental pediatrician, who told them, just as everyone else had, he’s fine. He’ll catch up. The family asked if he would test for Williams syndrome. He agreed.
Three weeks later the pediatrician called and told the mother that she was a good researcher and that indeed, he had Williams syndrome. It was 5:00 p.m. and she was feeding Louie in his high chair. A phone call that will forever be burned into her being. She hung up the phone and called her neighbor in hysterics; she couldn't be alone and needed someone until Chris could get there.
He came quickly. And that’s when she returned from above, came back to the earth, hyperventilated and collapsed on the laundry room floor. Later that night she crawled into Louie's crib with him. She was back. She had an answer. And that answer was Williams syndrome. And the child, the boy she imagined she would have, the one every parent thinks they will have, was gone.
She came back to the ground, the earth, the soil beneath her feet once again. Louie didn’t go to the road of coal. But the imagined Louie died; the Louie without a genetic disorder died. And left Williams syndrome behind. Now there was an answer, an explanation, a truth. A truth that would empower the family to move on and to live together once again.
