Would like to know your honest reaction to this
PIECE 1 — THE PROLOGUE
"Hey kiddo, how was practice?" I ask as my fourteen year old climbs in the back seat.
"Fine, mom."
But she doesn't seem fine. She usually has a lot to say. I ask if she is feeling alright as we pull out of the parking lot. A silver car runs the red light and nearly hits us as I slam on the brakes, throwing us both forward. Emma screams and then goes silent. I look back and she is passed out, only the seat belt holding her upright.
"Emma! Emma!" I scream. Nothing. I can see she is breathing but no response.
I race home — we only live a few minutes away — calling her name. Silence.
Then a deep breath. I look back. She looks around, looks at me confused, and passes out again.
What the actual hell is going on?
I pull up my husband's name on my phone and call. Two rings and he answers.
"Something is wrong with Emma. We need to take her in."
"I'm on my way."
We know the routine well now from months of anaphylaxis ER visits. But this is different.
In the driveway, I sprint around the car and throw open the door. She is starting to come to.
"Hey baby, are you ok?"
She nods. I help her, wobbly as a newborn calf, out of the car toward the front porch. She stops abruptly in the front yard and stares at the house.
"The house is going to catch on fire. It's going to burn down."
"What? What are you talking about, baby?"
"I've seen this before, exactly like this, and the house burns down." She's starting to panic.
That's when the cold terror started in my bones.
"Well, what if we changed the picture? Would that help?"
"Maybe, mom."
I broke a branch off the bush beside the walk.
"There. It's different now."
Satisfied, she lets me lead her inside.
I sit her on the couch and call to my nine year old to get her some water. She passes out again briefly, and when she comes to she isn't making sense — words tumbling out in the wrong order, sentences that start and don't finish. I call the vision doctor to ask what to do about the MRI scheduled in the morning. They tell me to take her to a children's hospital and get the MRI there.
David walks in the door and we both help her to the car. I buckle her up like she is two, kiss her forehead, and close the door. David starts the hour drive to the children's hospital.
I watch them pull away. Wave and smile, but it doesn't reach my eyes. The minute they are out of sight, I start crying.
My phone rings not even five minutes later. It's him.
"She's talking about the sky. She says there is purple rain falling from the sky. What the fuck is going on?"
I'm terrified.
"I don't know, hon. Surely the doctors will know. Just get her there and we will get some answers."
Oh how naive I was.
PIECE 2 — THE ER
"Please, mommy, help me. I'm scared. It hurts so much."
She's looking at me the way she did at four years old — like I can still fix anything. Then her eyes close and she slips unconscious again.
My fifteen year old and I are in the emergency room. She came in complaining of extreme neck pain, headache, and vomiting. We tried to manage it at home but she kept getting worse, so we finally made the call to bring her in. They got us into the back fairly quickly, but we have been waiting a long time in this room. Easily over 45 minutes and, other than an initial check by the resident, nothing has been done. The resident noted left side weakness in her neuro exam. They haven't hooked her to a monitor. They've done nothing but leave us waiting.
Emma comes to and starts groaning in pain.
"When are they coming, mommy?"
"I don't know, baby. Soon."
I open the door to see if I can find anyone. No one is paying me any attention. I go back in the room and we wait.
She starts shivering uncontrollably, her teeth chattering hard like those old wind-up toys.
"Mommy, I'm so cold," she manages between chatters.
It was sudden — she had been burning hot just minutes before. I pull the blanket out from under her. Not enough. I add the folded blanket from the chair. Still freezing. I push the call button and request more blankets. A nurse appears with heated ones a few minutes later.
I ask if the doctor will be in soon.
"Hopefully," she says, and leaves.
Finally the doctor walks in. She doesn't examine Emma. She looks me in the eye.
"I can see all of the notes — electronic records are a thing now."
"Great. Then you know she has had a lot going on since April."
"Yes. I can see all of the doctors and specialists."
I start to talk. She cuts me off.
"I'm not doing anything here today. Your doctors already have a plan. You need to take your daughter home and follow it."
"What are you talking about? We don't have a plan. No one has figured anything out yet."
"Yes you do. Your rheumatologist has a plan. Take your daughter home and get her CBT therapy."
"Therapy? What does that have to do with her neck and headache?"
"There is nothing wrong with her neck."
"She can barely move it."
So she does a neck exam, telling Emma to touch her chin to her chest. Emma can't do it from the pain, but she manages to look slightly down. The doctor is nearly shouting at her to do it more. So Emma, always compliant, pushes a little further — and breaks into tears.
"There. She can look down. It isn't meningitis. Go home. Get therapy."
And with that, she walks out.
I am absolutely dumbfounded. I have never been spoken to like that in my life, let alone by a doctor. The nurse walks back in to start discharge.
I protest. Something is really wrong with my child and we don't have a plan with rheumatology. Emma is low in ferritin so we are supplementing, but that is all rheumatology has done. There must be a mistake.
Emma starts shivering again.
I tell them I'm not taking her home like this.
The nurse leaves. The resident comes back in and hooks her to the monitors. Then leaves.
She passes out again. When she comes to she doesn't know where she is or how she got hooked up to the machine. She is frantic. I calm her the best I can.
Then the staring starts. She goes completely still, eyes open, non-responsive. I call her name several times. Nothing. Just that blank stare. Then she snaps out of it — laughing. Maniacal, unhinged laughter.
The nurse comes in to check on her.
While the nurse is there, Emma starts talking about her neck.
"It hurts so much," she says. Then, almost cheerfully: "I named it. Her name is Linda."
She looks at the nurse conspiratorially.
"Linda is so silly. Bad Linda. Hurting me. Bad, bad Linda." She gestures toward her back. "And this is Jeff. Jeff is an asshole. He hurts really, really, really bad. Fucking Linda and Jeff."
With that she dissolves into maniacal laughter — then cries out in immediate pain, grabbing her neck from the sudden movement.
"I can't be doing that. Linda and Jeff are going to kick my ass for laughing." The words come out in a Southern drawl she lost when we moved north over a decade ago.
I'm really scared now.
No one comes.
She moves on to her fingers.
"This one is Ginger. This one is Phillip. This one is Dolphin." On and on.
I'm crying silently.
The nurse comes back and sits Emma up. Emma protests — the movement hurts her head. She starts introducing her fingers again.
"This is Ginger. This is Phillip." She stops. Her face crumples.
"I can't remember his name," she says, staring at her third finger. She starts to cry.
"I think it might be Elephant?" I offer.
"No," she wails, "it isn't Elephant. He doesn't look like an Elephant."
She's really upset now, starting to sob. Then suddenly she stops.
"Oh. I remember. He's Dolphin."
All smiles. She continues introducing her fingers to the nurse, who tells her she is obviously quite creative.
I ask when someone is coming back. Obviously Emma is not herself.
She says she'll check.
She comes back with discharge papers and the resident.
They aren't doing anything further, the resident tells me matter-of-factly. They're discharging us with a pack of heat patches for her neck muscle soreness.
"But look at her. The nurse just saw it herself."
"We are discharging you."
"She is sick."
"We aren't doing anything further."
"Then put in our chart that we are leaving under protest."
"Fine."
They don't.
They wheel her to the door. I can barely get her to the car — the pain of being upright is too intense. She has to lie down the whole way home. As we drive she passes out periodically, laughs like the Mad Hatter in between, and lodges ongoing complaints about what an asshole Jeff is.