and I’m not okay
My daughter had a seizure yesterday…and I am not okay.
We were eating dinner, gathered around the table.
My girlfriend, my daughter, and I.
“Mary, what’s going on?” asked my girlfriend. She had fallen over to the side, her left side, in her high chair. Her eyes went blank, she looked far away. Silently, her right hand started to twitch along with her face. Her right shoulder supported her head.
My daughter had a seizure, in the silent, terrified quiet of my partner and I’s shock at trying to understand what is happening. My mind struggles to grasp. Her face is vacant, her shaking is slow, but there. She is far away, but she is there. “Seizure, Seizure” says my mind, showing me the pictures of previous seizures I have seen. “You must accept now, your daughter is having a seizure.”
She is supported, she is strapped in her high chair, she will not fall over. We are here supporting her, she has nothing in her mouth, she will not choke. She is safe, except she’s having a fucking seizure.
“Take video” I order my partner. She gets out her phone. This must be documented. I want to show the video to her doctor, I want to know what type of seizure this is, we must keep this evidence. We take video, but not for long. The next step is more important here.
“Stop” I say. “Call 911.”
My girlfriend, to her amazing credit, listens to my orders. She calls 911 and puts on speaker.
“My one-year-old child is having a seizure” I tell them. They ask my address. They ask if she has a fever, they ask if this is her first seizure, if this is my first baby, I say yes to all of them. Of course this is her first seizure, why else would I be feeling this way? My baby doesn’t have seizures, unless, now she does. Unless, now she is. She is. She is having a seizure. A horrid reality attempts to grip me. Perhaps this is the start of something new.
I realize my baby’s skin is fire warm. Damn! I noticed she was warm, but thought it was because the car was warm on the ride home. Is she having a heat stroke?
Paramedics are on their way. My girlfriend is holding her in her chair, while I grab dish towels and run cold water under on them from the faucet. I drap the dishtowels on her head, on her body. She is still seizing, but her body starts to calm down. The cool water appears to be helping.
The operator asks if she is breathing. OMG. My baby could stop breathing. I check her breath, who knows if she is breathing? I put my hand by her face. I don’t feel anything. I don’t feel anything. The operator is saying to take off her shirt. My girlfriend lifts up her shirt. We see her belly contract up and down, I can’t understand the operator, but she tells us to start. I count the rise and falls of my daughter’s chest. Up and down, up and down, she is breathing.
Baby girl has stopped shaking. Her face looks tired, still out of it. She is coming back now. She is tired, she is confused, she is run down.
911 tells us to be ready for the parametics, to put any pets in another room. I grab our dog and close him in the bedroom, despite his protest barks. I turn on the pourch light and open the front door. I check if they are here yet. I make sure the wet towels stay cool. My baby had a seizure and I am freaking out.
My partner takes her out of the chair. I have to hold her now. My baby is tired, and looks like someone ran over her. I hold her, I sing to her. My baby had a seizure and I am not okay.
“I don’t want this for her” I say to my girlfriend. Emma my girlfriend is calm. She asks if the porch light is on. She knows what’s going on. She keeps a clear head, listens to me, and understands. She is amazing.
“I know, I don’t either” she says to me.
I think of The Spirit Catches you and You Fall Down, A book I read about a little girl who had seizures. I think about Anna Marie*, a former student of mine. I think of Anna Marie, lying on the carpeted floor of our school, coming out of a seizure, redfaced, wet-eyed, messy-haired and exhausted. Not able to get off the floor for a minute, Anna Marie, the smart, flannel-wearing, funny and clever Anna Marie, humbeled by a force none of us had any control over.
I think about epilepsy, I think about seizure disorders, I see hoards of medication, keto diets, and her having to carry this burden her whole life. I see my daughter’s independence being limited, her not being allowed to drive, her not being able to do things out of fear of her seizing.
I see her getting brain-damaged, grand-mal something or rather. I see her getting sick in her brain, not getting enough oxygen, seizing not stop, and losing her. Losing my only child. Losing the only human I ever created, loved, nurtured, and happily devoted my life to. I see her suffering. And it’s not okay.
I hold my baby in my arms. We wrap the towels on her back. She is done seizing now. She is sleepy. She is confused, cuddly, and wants to rest on my shoulder.
The paramedics are here. My girlfriend is holding her now while they examine her. She is tired and complacent. I want to ride in the ambulence. Where is my phone? Where is my bag? What shall I bring to the ER? Emma will drive and meet us there. Where is her car seat? Did I do something wrong? Is this my fault? Was the car ride from daycare to warm? Did I leave the heat on in the car to long? Does my baby have brain damage?
The fireman tells me she seized because she has a high fever. He says it’s common, it’s going to be okay. This happens all the time. It’s how children’s bodies work. Another fireman tells me it happened to his own child too. The paramedics say it’s has to do with a toddler’s hypothalamus, when a fever gets to high suddenly, the brain just resets.
“If I had a dollar for everytime this happens, I would have reitred years ago!” says another guy. It’s comforting to some degree. It sounds like it will be okay. She will be fine.
They tell me I didn’t cause it from having the heat on to high in the car. It’s not possible. She’s sick, probably a cold or a flu, and her temperature went up and this just happens sometimes.
We go to the ER. Baby girl isn’t seizing, but she is quite calm, tired, doesn’t want to play, crawl, walk, talk or do her usual things. She is content to sit in her car seat catch her breath, watching the world go by and looking around. I do my best to let her know I am there and I care about her. I don’t want to let her go.
The ambulence unloads us at the ER. We get checked in. I google Febrile Seziure. A simple febrile seizure the doctor confirms after checking her out. It lasted less than two minutes, less than 5 minutes, we did everything right, we were good parents, we didn’t harm her or do this, this wasn’t our fault. It doesn’t indicate epilepsy, it just happens. But my heart won’t calm down. I’m so terrified. I just can’t. Of all the weird things, babies just have seizures when they get a bad temperature.
The nurse pretends to feed me children’s tylonel in a syringe tube type of thing. It’s my idea. My daughter doesn’t want to eat or drink something a stranger gave her, but she loves to copy me. When she sees me pretending to drink the tylonel, she wants some too. She takes some tylonel, and her fever is coming down. They swab her for covid, RSV, and other things. No, they don’t think she has menegitus. She starts babbling again, but is clearly still tired. We give her some breast-milk in a bottle, her absolute favorite, and she is a happy baby again. She wants me to hold her now, she wants to be snuggeled while she drinks her treat.
We stop at a walgreens where Emma buys children’s tylonel, a new thermometer, and other comforts. I stay with our daughter. At home we put her in clean, cool pajamas. I read her stories, sing her songs, and put her in her crib with her favorite toys, the elephant and and the puppy dog. I stroke her hair and her cheeks, and sing her the songs from my grandma and her friends. The songs from the church I grew up in. I pray to God for my baby.
Emma stays home today, our baby will NOT be going to day care today. I take tomorrow off of work, but I have to work today.
All day long, I think about those parents, who aren’t as lucky as me today. I think about Anna Marie’s Mother, about parents of epilepsy, of seizure disorders. I think about brain damage, and the fear of watching your baby’s body be controlled by something we have no control over. I think about how to communicate to my daughter what happened to her, and how much I want to tell her it’s okay. How she doesn’t yet understand what happened to her, yet somehow she understands more than me because she just lived through having one, and I never have.
I send an invisible hug, and want to reach out and hold the hand of every parent ever who watched their own previous little babies seize, and wonder if they will be okay and what this will mean for their lives. I worry about that even if all of this is fine, what other dangers bigger than me that I can’t control will threaten to harm my little daughter, my little rose to the world, and how valuable and precious her life is, how I will do anything to protect it, but how easy it can be to have it all taken away.
I think about how being a parent means always knowing and fearing our limitations and that there are forces we and our big bodied grown up selves can’t protect out little ones from, and how humbling that is.
My daughter had seizure, and she is recovering just fine, but I, her parent, am not okay. And I wonder if I ever will be.
