Early on, my son’s disabilities slowly became clear. The seizures came first. It would be another year or so before living with autism would become our reality, but his pervasive development disorder was beginning. And despite how suddenly it all started, it wasn’t going to just disappear. When he had a second seizure, we realized that Porter’s difficulties were here to stay.
From A Bad Reaction:
I am home alone getting ready for work and drying my hair as Porter lies beside me on a blanket. When I smile down at him, Porter’s eyes are frozen and his lips are blue. I scream and put my cheek against his mouth to check if he is breathing. He is not. I don’t feel anything. He’s dead.
I grab the phone and punch in 9-1-1, tapping my foot through two slow rings.
“Emergency, can I help you?” the operator asks.
“My baby stopped breathing.”
“Tell me what he looks like.”
“His face is blue!” I scream, as I clutch Porter in my arms.
She says loudly, “You need to stop yelling so I can help you.” I force myself to concentrate as she guides me through baby CPR, and I do the two-fingered presses until I hear the rescue truck pull up outside. We live a block away from the station so the firefighters come first, tromping up the stairs in blue coveralls and boots. A medical case like a tackle box bangs the wall beside me as they circle around Porter and then move me out of the way. A man drops to his knees and takes over for me until Porter starts breathing, one quick little gasp.
We scramble into the ambulance and the paramedic tucks a bear onto the stretcher beside Porter, saying, “The church ladies make these.” I watch the numbers on the oxygen gauge flash every few seconds, holding my breath, fixated on the monitor.
Porter breathes normally on the ambulance ride over. I watch the gauge so I am positive about this, and he breathes all the way. I call Brian from the ambulance, only able to say, “Porter stopped breathing—he was blue, Brian. We’ll be at Minneapolis Children’s Hospital.” We pull up to the emergency room entrance where a woman greets us by the automatic doors. She’s holding a huge stack of files, signaling for us to hurry up with her one free hand. You didn’t need to be an expert on body language to understand that she’d be calling the shots. She probably knew in kindergarten that she was going to be the head nurse.
I jog after the gurney as they wheel Porter into an examining room. I stand by the medical shelves filled with rubber gloves and plastic tubing. A doctor leans over Porter and looks at him, then listens to him and touches his face and I want to know what the doctor is checking.
Brian arrives, panting and pale, and asks, “How is he?”
Porter’s face was cold.
“Okay,” I say, “Just sleeping, I think.”
”It happened again.” Brian puts an arm around me, but I don’t want to be touched and I move away. We watch the people buzz past the table as Porter lies silently on his side.
“The seizure wasn’t a fluke,” Brian says after a few minutes, which is exactly what I am thinking and trying not to say. A doctor confirms this moments later, telling us that the vaccine can now be linked to an ongoing-seizure disorder and Porter stopped breathing, as people sometimes do, in the middle of an intense episode. The doctor pulls a pad out of his pocket and jots something down with a tiny pencil that fits in the palm of his hand.
Our son has epilepsy and other health problems. It will be a year before we realize he has autism. I don’t know at the moment but my life is shifting and soon caregiving will be my primary role.