Nothing Is Static

How my daughter’s seizure reminded me to live in the now

Everyone of us has qualities, traits, interests, idiosyncrasies…whatever you want to call them, that are perceived as being ingrained in our being. They are a part of who we are as individuals…they make us unique and help us create an identity. “Johnny has been singing since he was a baby.” “Jennifer has always loved the outdoors.” These are the things that we perceive as concrete, unchangeable. Things that are tethered to our souls. They are as much of a part of who we are as our physical characteristics…blue eyes, tall, long neck, or even the scar on a knee for which the re-telling of the story will never, ever get old. Because it will always be a part of our history. A part of who we are.

About 8 years ago, Charly, my daughter with autism, had a seizure. This was not unusual in and of itself. We were in the process of tweaking her seizure meds for optimal control and a breakthrough was not uncommon. There was nothing remarkable about the seizure. The duration was very short…less than 5 seconds. Her eyes fluttered, her body twitched, her knees buckled momentarily but she didn’t fall down. Then it was over. She cried in confusion and discomfort and ran away, which was a typical reaction for her. And then, also typically, she became very tired and wanted to sleep.

We (being myself and her Habilitator, Cassie, who was with our family roughly 50 hours per week at that point) were very gentle with her for the rest of the morning and decided to give her a bath before her nap. Baths were one of the very few things about Char that were consistent at that time. Her other reinforcers could change on a daily basis but bath time, anything having to do with water really, was an old standard. Char has always loved the water…always. I would even bathe her to calm her as a weeks old infant. She would fuss and then quiet when submerged in the warm water. In her earliest days of undiagnosed autism, sometimes I would let her take 3 showers per day, an hour long each, because under that constant stream of water was the only place she (and I) could find peace from her disquiet. Where she could be alone and contained and safe. It was one of the very few things about her that I had never considered to be fluid.

However, on that day, she didn’t want to go into the bathroom. She wouldn’t even cross the threshold. She screamed her, “Oh, hell no!”, scream and ran back down the hall in the opposite direction. We turned the water on to show her that it was bath time! Fun time! Water time! We thought there might be something about entering the bathroom that she found objectionable. You never knew with Char. It could’ve been that some object was out of its usual place on the counter or that there was a towel in the room that she didn’t like the color of. We carried her back to the bathroom and over the threshold to show her the water…to calm her and communicate that we were about to do something she enjoyed. She wriggled out of my arms and threw herself on the floor in protest. This was a first. Unwilling to traumatize her by forcing the issue, we turned the water off, albeit with a good dose of confusion, and redirected her attention to other things before her nap.

I was unsettled. That hadn’t felt…right. We put her down for sleep and, when she awoke, we tried the bath again with the same results. This time we pulled her a little closer to the water and it became clear that she wasn’t just resistant…she was terrified. And it wasn’t just the bathtub. She didn’t even want to wash her hands. Water itself was now scary. Her seizure had stolen from her part of her identity.

It took nearly three weeks to bring her back to the bathtub. First, we tried taking showers with her…She wouldn’t even come near the entrance. To keep her clean during that time, we had to sponge bathe her with a bowl of water hidden behind my back so she couldn’t see it. Once that was well tolerated, we progressed to hand-washing with the faucet running, which wasn’t easy but she gradually progressed. At one point, we tried taking her out back, stripping her naked, and turning on the hose to bathe her in the yard. It was summertime and well over 100 degrees outside and we figured she might enjoy the play. She didn’t care for that at all, but what choice did we have? At least outside I wasn’t worried that she would throw herself down on the bathroom tile and thrash to the point of a concussion. It was an impasse. She had to bathe, but we couldn’t get her near a bathtub. We weren’t going to force her in and risk permanently traumatizing her. We still had hope that this would pass and had made some small gains with the hand washing. Hygiene was non-negotiable and desperate times, yada, yada, yada. It was horrible for all of us, but we were out of options.

The day it finally happened, 3 weeks gone by, we had gotten her to periodically come into the bathroom for reasons other than bathing. We would roll her favorite toys in there so that she had to fetch them and bought some blue foam soap for her sink to make hand washing reinforcing. On this day, we put her big sister Paige in the most fun bath you can imagine. Any toy Char had even shown a remote interest was in that tub. We added bubbles and jets and tabs that turned the water blue. She was…interested. I held my breath as she walked cautiously over the threshold toward Paige. Of her own volition, she went to the edge of the bathtub and sat…watching silently. After a few minutes, she reached into the water for her favorite blue, floating Thomas the Train toy. And she sat…perched on the edge…playing.

After about 20 minutes, we sneakily pushed little Thomas across the tub so she couldn’t reach it without being in the water and, after valiantly trying to reach it with her leg, she…fell…in, fully clothed. And then it was over. We have a fairly large, jetted tub so she went all the way underwater before surfacing and that dip was akin to a born again baptism. She surfaced, grinning, squealing as if there had never been a problem. She let us strip off her soaking clothes and she played in that bath for well over an hour. Water-loving Charly was back, and has been back ever since as though nothing had happened.

What really scares me about this story, and why I feel compelled to retell it, is that I haven’t been able to fully reconcile this experience. Something I thought was a true part of Char’s soul was erased in an instant. She was hit by a proverbial lightning bolt and part of her Self was vaporized. Now, in retrospect, It seems it was just suppressed and never really went away but, nonetheless, a part of who she is was erased, however short-term.

I realize that while this it was a revelation to me that this could happen, anyone who has had a loved one suffer Alzheimer’s or incur a traumatic brain injury would have the reaction of, “And???” But it was new for me and I would guess a new idea for some of you. Imagine the thing your child/husband/mom/friend enjoys most suddenly being frightening to them. Part of my child was missing, thankfully only temporarily.

What this experience did for me, though, was bring me full circle in all of the lessons Char has taught me. Life is fragile. It’s all about the moment. Live, laugh, love and don’t take anything for granted. All of those mantras people consider trope and that they hear a thousand million billion times and never take to heart, until learning them the “hard way”? I learned those.

It also took me to some scary places like, “God: yes or no?”, “Do we really have souls?”, and of course, “What the hell is the point of it all?” You know, the existential realities and questions our culture has conditioned us to suppress.

But.

I think the most relevant lesson here— one that I walked away believing in as strongly as I do gravity or inertia — is that we, as people, are guaranteed nothing and that everything we experience is a temporary gift. Char’s love of water is indeed a part of who she is…that didn’t change…but nothing, and I mean nothing, is static.

We are who we are in this moment. No more, no less. Our job is to soak up our people and our moments and the love that surrounds us and hold on to them as long as we can…because no one can promise us we will get another.

Mama, writer, lover, fighter — I wear my heart on my sleeve because my pants pockets are too small. www.ajkaywriter.com

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