You know, after years of paying such close attention to everything your child does – how far she creeps, crawls, runs and brachiates; how many grams of protein, carbs, and fat she ingests; how many words she reads in how many minutes, and how many new subjects she’s learned each week – nothing really prepares you for the moments like I have now as an almost-empty-nester. With Haylie off in college, enjoying the freedom and challenges of this exciting phase of her life, I find myself with lots of time to, well, live a pretty normal life. At first, it was a bit weird. Now, I love it.
It’s liberating and joyous not to be needed (much) and to get updates over breakfast before she loads up her backpack and heads out for the day, leaving me and the dog to handle the deliciously quiet, empty house. And, leaving me time to work without worrying about her, or what she’s doing, or how she’s getting along, which is why what happened over fall break weekend hit me so hard.
The Sunday before, Haylie went to get a TDaP vaccine, an adult booster for Tetanus, Diptheria, and Pertussis that is required by the university. Immunization compliance is a big deal these days and there is a strict policy that only allows students to register for classes once they have received all the required vaccines. Having followed the protocol for her childhood immunizations, I never thought we’d have to face decisions like this again. But, here we were. Haylie didn’t want to do any new vaccines, having read about questionable ingredients and skyrocketing rates of reactions. And, this one actually has a warning for people with neurological conditions, at the bottom, in the fine print. She consulted with a couple of good docs that we’re lucky enough to call friends and have on speed dial. They advised her to get the vaccine, since there really was no way around it, and to take some precautions by beefing up her immune system both before and after. She felt comfortable with that advice, acknowledging her own inner sense of vitality and well-being, got the shot, and went on with her life. No big deal.
The following Thursday night, she woke me up in the night with the familiar desperate gasping sound that she makes as she goes into a grand mal seizure, the kind where her arms and legs curl up tight into her torso and her whole body rocks with the single intention of squeezing every bit of oxygen out of its cells to send to the brain, which is desperately calling for it. I’m familiar with these seizures, though they only happen once or twice in a year now, usually around a time of stress, just before her period. Estrogen on the brain and low barometric pressure are not kind to neurons needing their oxygen.
I responded mostly on autopilot, rising quickly and grabbing a specially-designed reflex mask that I slipped over her mouth and nose, after first wiping away the puddled saliva with the dry corner of a pillow case. At first there was not enough out-breath to fill the mask with the carbon dioxide I need her to rebreathe in order to cause the dilation of blood vessels in her brain, therefore sending a greater volume of blood and the critically needed oxygen it carries. I watched her grimacing blue face carefully as I tried to slide my fingers between her palms and the long fingernails digging holes into them with violent, rhythmic contractions. They’re sharp. It hurts.
“Dammit, Haylie, why don’t you cut your nails more often?”
She could not hear me. And she would have no recollection of this moment. Her cortex was offline, and her brain had gone into a very important survival mode, desperate for enough oxygen to run the life-supporting functions of her body. As usual, the most dramatic part of the seizure was over within a few seconds. Now, the mask was moving in and out as she breathed more deeply, the pink color returning to her beautiful face, her fingers finally releasing their death grip, and her long, strong limbs lying loose again. But, she still was not conscious. I spent another few minutes doing the masking protocol that helps her primal brain attain its goal of gathering the oxygen and nutrients it requires for basic functions and, as it gets what it needs, I could see the signs of her cortex gradually coming back online. She was beginning to swallow regularly, reaching for her blankets, and trying to snuggle back under them. As usual, I waited until I was sure her color and respiration were normal, and then I allowed her to carry on with her sleep cycle.
This is how it has always been for Haylie. Something about the transition from waking beta waves to sleeping theta waves will cause her brain to jump track sometimes. And, ever since being completely detoxified from all the anti-convulsant medications, more than 15 years ago, she has had very effective, nice, big grand mal seizures, the kind that get their job done. For the last many years, she has had them only rarely, going for more than 6 years completely seizure free before the onset of menses and a regular monthly estrogen surge brought them back in a predictable pattern a couple of times each year. So, as usual, I flipped out her light and headed back to my bed, expecting to sleep through the night and to meet a perky Haylie in the morning.
Imagine my surprise when, about fifteen minutes later, I heard shuffling sounds that turned into quick, irregular footsteps in the hall, followed by one, then two louds thuds and a simultaneous loud shriek.
The dog and I both went running to find her in a heap on the floor, just outside her bathroom. She was fumbling with her pajama top and using a very clear, diplomatic tone for all kinds of incoherent sounds emanating from her twisted mouth. That cortex, the one that is responsible for activities like walking and speech, apparently still not back online. Weird. Really weird.
In scientific terms, this is called the postictal phase of a seizure, when the seizure itself has officially ended, but there are still some irregular electrical patterns happening in the brain and some cells are not yet getting the resources they need to do their jobs. I’m familiar with Haylie’s postictal tendencies, and this was definitely extreme.
Since she’s at least 5’6” and weighs a good 120 pounds, I was not going to be able to maneuver her on rubber legs with no coordination in any safe way. Thus began the great debate about why we should sit together on the floor in the hallway in the middle of the night for a bit and do the masking protocol, until she could walk independently again. Though I didn’t understand a single thing that she said, I clearly lost the debate as she wrestled her way past me and into the bathroom to relieve herself. Luckily, the I’m very serious and I’m your mom tone did have some influence and she agreed to sit there until I came back with the rebreathing mask. It took more than an hour to get her back to normal that night. And then, I slept with one eye open.
Friday morning, sure enough, she ended up with her usual seizure hangover – a headache and lethargy that required a nap soon after breakfast. She set her alarm, though, to wake in time for a math tutoring appointment and ran off to campus for some help before the upcoming exam.
For the last many years, Haylie has only had one or two of these seizure episodes per year and so once it’s over, I relax again and let the happy rhythm of life resume without worry. This doesn’t mean that she is not, with support from me, vigilant about the lifestyle choices she makes to keep herself as healthy as she can be. Preventing the need for a seizure is the philosophy she lives by. This means a regular routine of good rest, a high fat/low carb diet of whole foods (modified ketogenic diet), eating at regular intervals, daily exercise at a target heart rate, and other stress-managing modalities that keep her at her best. But, compared to life before The Intensive Treatment Program at IAHP, we live without the fear of a seizure just around the next corner, in part because there is a predictable pattern to them, and because when they do happen, I understand why and know what to do. No more stressful visits to the emergency room or late-night ambulance calls.
Friday night found Haylie still a bit wiped out and in bed early. Then, Saturday morning began with the same gasping moan from her room alerting me to another seizure, this one on awakening, also a normal, but far less common part of her pattern. On autopilot I did my thing, this time using the masking protocol to revive and wake her completely. No sense in tempting that off-track brain with more sleep wave transitions. As she breathed more deeply and fully, and the carbon dioxide gently dilated the blood vessels to her brain, her cortex gradually received everything it needed to operate at full function.
It’s a funny transition to watch because, as she makes those last final shifts up into her normal awareness and consciousness, she always gets a peculiar expression on her face, one eyebrow up and a sideways eye squint at me, just before asking, “What are you doing in here?” A glance around at the mask and timer tell her everything she needs to know, and then she’s open to hearing the whole story. She always wants to know what time it happened and how long it lasted. She immediately begins to explore the why’s…too much stress? Not enough fat before bed? That time of her cycle? Should she have use the progesterone cream?
She felt fine to get up and eat, but then the headache hit. Before long she was back in her napping spot on the sofa, feeling guilty for not studying for the midterms that were just a few days away, but knowing that she could not work until her brain had fully recovered. It needed rest now.
So, seeing her tucked in and feeling absolute relief in the fact that we had met our seizure quota for the year now, I headed off to IKEA while Haylie slept off her hangover. It was not a good decision.
About 45 minutes later, as I neared the exit to the IKEA store, my phone rang. It was Haylie. She slurred through a question about what time would I be done working today and what would be for dinner. Whaaaaat? Whoa.
“Honey,” I started gently, “where are you?”
Irritated at such an inane question, she shot back, “At home.”
“Yes, but where in the house are you? Are you still on the sofa?”
“In my room. Why?”
“Ok, can you do your old mom a favor, please? Can you sit down on the bed and just stay there while we talk?”
She slurs, “I think I am on my bed. Hold on. I’m not sure. Ok. I’m on the bed.”
Oh my gosh…what should I do? She is postictal. She has had another seizure! And she’s home by herself with a half-assed cortex. Oh, this is not good.
I did my best to focus on the road while I fumbled in my purse for my cell phone. I explained to Haylie that she needed to sit very still while I put her on hold for just a second. Then I called my mom, who lives nearby.
“Mom, you have to go to my house. Now. You need to go and stay with Haylie.”
I talked with Haylie while she waited for Gram to arrive. I tried to help her understand what was happening and what she needed to do. I felt confident that as long as she sat still, she would not be hurt. I just didn’t want her wandering around on legs that won’t listen to cortical commands with no balance or coordination. By the time my mom got there, Haylie was surprised to see her. She apparently had no functioning short term memory, another job of the cortex. And even the next day, she did not remember my mom being there to visit, spending over an hour with her, having lunch, and supervising Haylie’s masking, while I raced back down interstate 69 from Indianapolis.
By the time I got home, she was back to normal in terms of her mobility and coordination, but her cognitive function was still poorly lacking. She kept misspeaking, asking repetitive questions, getting confused about what day it was and what she needed to do. She tried to read a bit, but found herself going over and over the same sentence with no understanding. I did everything I know to support her brain in its recovery efforts – a hot epsom bath, a long gentle walk, lots of rest, deep sleep in a cold, dark room, extra B vitamins, extra minerals like magnesium and calcium, high fat foods at regular intervals, lots of extra oxygen enrichment. Suddenly, I was that mom again. Protective mothering on overdrive.
By Monday, she was back to normal again, but with no memory of the weekend or its events. She was feeling the subtle sense of relief that often comes after a seizure, like a mental/emotional reset button that gives her a sense of starting fresh. The problem was that this was midterm week, and not only was she not able to study all weekend, but now was not the time to be a blank slate.
I began this blog to share pieces of the book I'm writing about my daughter's courageous march down the path from brain injury to wellness. It's the story of how one little girl overcame the odds, a long list of labels, and limiting diagnoses. I hope it inspires other parents to dream bigger by knowing what is possible.