I stood at the edge of the sidewalk, desperately clutching a white quilted package that an elderly, grandmotherly type had probably quilted as part of her volunteer work for the hospital. I remember thinking, "This is what fish must feel like inside their bowls". I could see the world around me, but I couldn’t quite hear. Everything looked familiar, normal and real; cars honking, a delivery truck parked illegally, people walking by talking on cell phones. A totally normal Wednesday morning in the early summer. And yet, I felt like I had just arrived here from a foreign country and nothing around me made sense.
As the horns honked and the pedestrians on phones veered around me, I clutched my white, quilted package tighter. The thought "It’s not supposed to be like this" rang out in my head. I probably actually mumbled it out loud, as tears dripped down my face, but given I was outside a hospital in downtown Toronto, nobody batted an eye. Where was my husband with the car, I thought. "I don’t want to hold this stupid, quilted package anymore," I muttered to myself. Again, there was no reaction from the pedestrians around me. I wanted to sink into the car, hold my husband’s hand while he drove us home so I could disappear into the quiet, safe sanctuary of my house. But most of all, I wanted to scream “I don’t want this fucking quilted memory package. I want my baby!"
The night before, at 8 pm, my son Ryder had been born, weighing barely one pound. Three hours later, my sweet, tiny first born son died in my arms. And now here I was, 16 hours later, discharged from the hospital, standing on a sidewalk. The world continued to turn while mine fell apart. And instead of a holding a brand new baby, I was holding this stupid, white quilted package in my arms, filled with pictures and mementos from my baby’s birth. Right. My baby. The one that isn’t in my arms like he is supposed to be, but the one that is dead. "It’s not supposed to be like this!" my brain yelled.
12 days earlier, we received the phone call no expectant parent wants to get. My midwife had called and gently said, "Something abnormal has shown up on your anatomy ultrasound". A few minutes later, she said, "I can’t promise you it will be okay. But I can promise you, I will do my best to get you an appointment with the genetics team at the hospital as quickly as possible".
She was true to her word, and two days later, I was at Mount Sinai surrounded by what seemed to be a bajillion joyfully pregnant women, all excitedly waiting for appointments in which normal, happy results were being discussed. At the end of the longest ultrasound ever, the radiologist came into the exam room, put her hand on my arm, and said softly, “I’m so sorry, I have to confirm what the first ultrasound showed. I am seeing significant brain damage”. The room went dark, I fell into my husband’s arms and I was swallowed up by the sound of my own deep, guttural sobbing. "It’s not supposed to be like this," my brain and my body screamed at me.
The next few days were a whirlwind of tests, ultrasounds and appointments with doctors who had titles I couldn’t pronounce or even understand. Words like ‘X-linked hydrocephalus’, ‘grave prognosis’ and ‘profound disabilities’ were used, and intellectually, I knew the definitions of these words, but despite this I could not make sense of what was happening to me, and to my baby. Our genetics team spelled it out for us, gently and with profound kindness. I knew they were not new to explaining the unimaginable to other shell-shocked couples, and eventually, the words and the outcomes began to become clear to us. Our baby was missing parts of his brain due to a genetic condition that affects one in 35,000 babies. It was very likely he would die before his due date. If he did make it to his due date, he most likely would be born still. But he could also live, and this is when the terrible, ominous words got used.
As I stared at the doctor with the overwhelming title, it became clear to me. They were asking me to choose. Choose to end the pregnancy or choose a life of pain, suffering and turmoil for my baby, my first born, my sweet son. And this moment of clarity happened while rubbing my pregnant belly as my son kicked me insistently from the inside. Sitting there, on that hard, upholstered armchair in the geneticists’ office, I choose the unthinkable. I choose to be induced into labour at 22 weeks gestation. I choose to give birth to my baby, my sweet, broken, dying baby so he could die a peaceful death in my arms. I choose to do this, so that he wouldn’t live out his life in profound pain and suffering. Although clarity and peace came with this choice, my brain and my baby still violently screamed at me, "It’s not supposed to be like this! It is not supposed to be like this."
I clutched that white quilted package every night for the next month. I would lie in bed, looking through all the mementos… his pictures, the blanket my mother knit for him, the certificate filled out by the hospital chaplain who performed a naming ceremony for us hours after he was born. I would lovingly look at all of them, then tuck them back into the quilted package before putting it back on my night table and rolling over to cry myself to sleep.
It’s now been eight years since Ryder was born. I don’t clutch that package of memories before I go to sleep anymore. It’s still on my bookshelf though, and I’ll see it out of the corner of my eye occasionally, and my brain will still want to scream "It’s not supposed to be like this". But then, one of my two beautiful daughters will say or do something profoundly beautiful (or not, because you know...seven and four year olds), and I’ll wonder, "Was it supposed to be like this?"
Without Ryder’s short little life, we wouldn’t have gotten pregnant with Brooklyn so quickly. My brain starts to whisper at me sometimes, "Maybe. Maybe. Just maybe it was supposed to be like this". But then I want to punch myself in the face because anyone who says ‘Things happen for a reason’ to a person in the throes of grief should be punched. It is such a strange, mixed up place to be. I want to have my cake and eat it too. I want all three of my children, alive and happy. But this is simply not possible. Ryder’s death brought me to Brooklyn and Piper’s births. I can’t have him and my daughters all alive. When I scoop up my two beautiful, healthy, unbroken, living daughters in my arms, and pack them into the car for a picnic at their brother’s grave site to celebrate his birthday, my brain whispers to me "It wasn’t supposed to be like this, but it is like this. Bittersweet. This is so bittersweet."