I watched helplessly as her face turned blue. Life seemingly left her little body and I stood there powerless to fix what I promised as a mother to always protect. Her life, her health, and I failed. I called 911, I screamed for my husband to come upstairs, I did everything I could think of to help without knowing if anything I did worked or mattered to change what left me in a numb panic of cowardly acceptance at the sight before me of my daughter having a seizure. We followed the steps we were trained to do by every first aid class since we were kids yet I could not stop my child from momentarily dying in front of me. The doctors later explained that our efforts did nothing to save her and that there was no way to perform resuscitation on a seizure victim. Ultimately it was her brain deciding to cease the seizure that saved Leonora. To call it luck or fate is to tempt the hand that graced us that I cannot, and would not, try to name.
I have witnessed someone dying, watched my family’s house burn to the ground, and felt the pangs of hunger all before I was eight. I have been reduced to the worst of humanity many times over just to survive. None of it was as humbling as the catastrophes of this year. This was the year that I saw my child die in front of me and it has brought me to my metaphorical knees. I have struggled for months to write while trying to homeschool both of our kids (the one that I’ve homeschooled for three years was difficult enough but the addition of her sibling has proved to be disastrous) and cope with my own health problems and the ever present anxiety and depression of living in a pandemic. I’ve survived when others have not. My daughter has survived when, by sheer chance, other children have not during a seizure and they still know so little as to how to prevent them. It is possible to be equal parts grateful and traumatized because I can attest to this juxtaposition in my current conflicting emotions.
Calling 911 is the worst call you’ll ever have to make and the most gratitude I’ve ever felt for someone answering the phone. You’ve called customer service, right? You’ve had to repeat what your complaint is only to repeat your personal information many times over only to be transferred to do it again? Now, imagine being in a dead panic with resuscitating your child and trying to convey how to find your house and explain to them everything you’ve just done leading up to reviving your child in the middle of the night at 2 am while reassuring your other child on the spectrum that everything is going to be ok and then repeat it. That’s what it was like and the poor guy on the other end of that phone was so calm and kind. I don’t know how they do it every day.
In between helping Leonora, answering the 911 dispatcher’s questions, and throwing items into a bag to go with her once she was breathing and lucid; I checked in with Owen who was huddled on the couch in a silent panic. I’ve never seen his eyes so large, so unblinking, or his grip so tight on a stuffed animal. He was barricaded by a huddle of “helpers” in our living room. I squatted down in front of him to block out their stares, “Owen, you are so brave. Please stay right here and wait for Papa. He’s going to be right back,” I could hear him carrying Leonora down the back steps after refusing the help of the emergency workers because their attempts to touch her elicited shrieks of terror, “I need you to be brave a little longer and not move from this spot. We’ll be right back and Papa will stay with you.”
He hugged me and I squeezed him. I waited for him to let go from the hug without wanting to rush him. I gave him one last cuddle and hoped I wasn’t lying, “I’ll be back as soon as I can. I have to help sister now.” I felt awful leaving him there amongst strangers as I ran outside to climb into the ambulance.
There were many people there to help but with COVID it added to the trauma experienced by both kids. Owen told me later that he cleaned up after the “helpers” with baby wipes. He asked that I give his teddy bear away. It was “ruined” by that night that “sister was bad sick”.
The ambulance wouldn’t leave right away because, like many on the spectrum, Leonora had a panic attack once in the vehicle due to the loud voices, lights, and stress of the situation. I had heard this was an issue for neurodivergent people and even had taken them to tours of ambulances and “first responder” festivals to acquaint them with the vehicles and the people that are first responders but none of that mattered until I experienced it first hand. The EMT’s, trained on autism or not, don’t seem to understand a simple act of human kindness or possibly the logistics of autism such as not shouting over a child’s head. The EMT sat behind my daughter’s head, the child who just had a grand mal seizure, and shouted questions at me across her. Leonora had just regained consciousness and went right into a panic attack once startled by the woman yelling behind her head. My goal was to calm her and did what most of us mothers would do. I held up my index finger to the woman to stop, looked at the other EMT, asked him to buckle me in, and shouted in a baritone voice, “JUST DRIVE!”
No huge surprise, her questions stopped and proved pointless other than to rule out whether or not we had hurt our child or made up her symptoms. None of those theories of course were founded or true given her symptoms or that her blood pressure was doing the tango all the way there and her hands continued to tremor as her body shook. I kept eye contact with her, nodded my head and smiled tentatively to let her know I understood. The other medic asked if she was in pain because she was keening and moaning as her eyes rolled from one side to the other. I quietly patted his arm and whispered, “She’s having a meltdown, she’s overwhelmed, please stop.” They finally both were silent and only spoke to each other from that point on until we neared the hospital and they shouted, “Ok, we’re here.”
I now know what other mothers mean about navigating the emergency room with an autistic child. I was treated as if I was in hysterics even though I was silently in shock and focusing all of my energy on keeping her calm. My questions were met with derision and every request was a cue for exasperation in regards to her sensory needs until we were handed off to the hospital and entered the emergency room where they hooked her to the machines. Suddenly everyone was kind and the repetitive questions ceased. I’m not sure what scared me more, the theatrics of condescension from the ambulance crew or this new artistry of cryptic assessment. They clearly sensed the need for care but wouldn’t offer answers, much less theories, as to her seizure but at least we finally were with professionals who understood her needs.
Hours went past. It was suggested that we allow her to sleep. They asked if I wanted to go home and rest. I explained that I wouldn’t be leaving. I stayed awake by her side and emailed everyone I could think of, her usual doctors and therapists, to ascertain the cause of her grand mal seizure and ask them for theories. But life isn’t like the medical show, House, and a diagnosis isn’t received within one trip to the hospital. The bulk of your time as a parent is sitting in an uncomfortable chair, waiting, and battling away the internal horror show of your imagination that’s parading the “what if”’s as you sit powerless to help your child.
A nurse, Bethany, was shocked and amused as Leonora was suddenly lucid and wanting to regale her with trivia about how blood is created and quiz her about the steps of the IV insertion and ask her a million questions about how she learned to perform one. The nurse cracked up laughing and asked her to try to be still. Leonora calmly explained in a solemn voice that this wasn’t possible because she didn’t have the right stuffie. The nurse looked at me and we both busted up laughing. Leonora begrudgingly joined in and looked a little embarrassed, “Sorry, I’m weird.”
I reminded her that weird is good and that she had nothing to apologize for. We went through our mantra, a personal joke that she and I have to distract her from the nurse’s efforts at phlebotomy on her tiny arm.
“Did you hurt someone’s feelings?”
She smiled in anticipation of the questions, “Nope!”
“Did you hurt someone?”
I watched her shoulders relax and her arm go still for the nurse as she focused on our game, “Nope!”
“Did you run over someone?”
The nurse’s head snapped towards me and she smiled in disbelief.
“Nuh-UH! I don’t even know how to drive!”
“Then you have nothing to apologize for, right?”
“Right!”
She declared this with a smile and squeezed my sweater I gave her in lieu of a stuffie while the nurse valiantly tried to find a vein for the blood draw and IV drip. A problem that’s common with those that have EDS (Ehlers Danlos syndrome) is dehydration and our veins can be difficult to find.
A neurologist finally came in to talk to us. He was brusque, kind, nervous to make eye contact, and stood in the corner of the exam room to keep his distance from us but I had a feeling I would have COVID or not. He quietly and succinctly asked questions that had been asked before and some new ones that made me wonder as to his theories. I mentioned her healthy history and asked him what I was afraid of, “Does she have epilepsy?”
“We don’t know…we won’t unless this happens again.”
The downside of an intelligent child is that they understand everything going on around them. I looked at her the moment he spoke the words and heard her whimper, “It’s going to happen again?”
I hugged her and looked at him imploringly to say something but he was already moving towards the door but I wasn’t letting him off easy.
“We don’t know, sweetheart. Can you please explain to her what happens to a brain when it has a seizure?”
He looked at me in surprise and stayed fixed to his spot halfway out the exam room door as he robotically explained what they understood a seizure to do in a human brain. She visibly slumped down into the bed and calmed while she took in his explanation.
“So my brain had a misfire?”
I nodded at her and smiled, “Exactly, you got it. You had a short circuit in your wiring.”
“Ooooh, ok! Thank you.”
He waved goodbye furtively and smiled at her as he left. It was like the queen had dismissed him. I allowed myself to enjoy the moment and laughed but his words sat like a boulder on my sternum, “We don’t know.”
We returned home later that day with no answers and a promise of getting back in touch with us. Like most services for my kids, it became yet another uphill battle to get appointments and to be heard by anyone knowledgeable to help answer our questions. We dusted off our baby monitors and hooked up a camera to watch her. I went to bed every night without sleeping to watch the monitor until I drifted off and left the sound on the highest setting to wake me if she needed me. The effects of the seizure took a week to lessen and eventually disappear after two weeks. I didn’t sleep more than three hours at a time for three weeks and felt I aged twenty years after the night of that seizure.
Three neurologists later, many phone calls and emails, medical tests, and still nothing. Until finally a doctor specialized in children’s neurology offered this, “We just don’t know.” Our instructions were to let them know if it happened again. One of the doctors belittled me for having more than one child on the spectrum as if I should have magically known their diagnosis prior to their birth and all of this was my fault for having them. That the seizure was preventable because I shouldn’t have had them at all. That same doctor criticized me for not timing her seizure and videotaping it for them. As if every parent wakes from a dead sleep to the sound of their child having a seizure for the first time and automatically knows to record it for posterity.
Then, completely unrelated, it was suggested by my own doctor that I should increase my salt intake to help balance my irregular blood pressure due to my PoTS (postural orthostatic tachycardia syndrome) (https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots). I asked if I could try the same electrolytes for Leonora to see if it would help with her EDS and PoTS as well and, to our amazement, it has! We still don’t have all the answers and neither do the doctors but we have salt! Who could imagine that such a simple change would help turn her health around so quickly. It’s possibly unrelated to the seizure but I’ll take the little win despite the resistance from the other doctors to even consider how her underlying health conditions could have been related to or caused the seizure. (See below.)
Here’s to the simple wins and pushing for answers. Here’s to all the parents and first line workers this year that have had to battle the exhaustion, the complacency of others, and the maddening tide against us of an administration that has failed us all. I can only imagine, after what we’ve been through, the true horrors that others have faced that have been dealing with COVID first hand or who have lost a loved one with never being able to say goodbye.
I thank all of you that have worn masks, stayed home, and showed up to battle this nightmare firsthand when you could have so easily turned away in fear. I’m celebrating simply the end of 2020 but I’m rejoicing at what we’ve learned about ourselves not just within our own home but of us all. There is strength to carry on and fight but the choice to find it in each of us is so overwhelming when we’re worrying about feeding our kids or keeping them safe. I hope we all take the experiences of this year and find compassion for others and do what we can to simply help instead of hurt. Wear a mask, stay home when you can, and help if you can. Happy 2021 and much rejoicing at seeing the back of 2020.
https://pubmed.ncbi.nlm.nih.gov/25131162/
https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots
https://www.sciencedirect.com/science/article/pii/S1059131114002131
https://www.seizure-journal.com/article/S1059-1311(18)30054-2/fulltext
https://www.seizure-journal.com/article/S1059-1311(18)30011-6/pdf
https://www.sciencedirect.com/science/article/pii/S1059131114002131
Politely Defiant 
My heart is aching that you have suffered this pain. Your words make me want to help you, I am so sorry that I can’t fix this.
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Thank you for your words and wanting to help but reading what I have to share is thanks enough. My only hope is that by sharing my experience I help others like myself with resources and feeling less alone.
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