On a Thursday night two weeks ago, I’d just helped Daphne, our daughter, take a shower. She was wrapped in her soft pink towel; we’d brushed her teeth and hair. I was about to slip her nightgown over her head when she pushed my arm away and plopped down on the toilet.
“Okay, I’ll give you some privacy,” I said.
She sat and sat, and I waited and waited on the other side of the bathroom door, growing alarmed. This was weird.
I peeked my head back in. “You okay, Daph?”
She shot her arm up in her sign for yes, but she didn’t look alright. She was slouched over, like she didn’t feel well, but nothing seemed to be happening.
Finally, after ten minutes, I went back in and prompted her to stand up.
“C’mon, let’s get you dressed.”
But before I could take the towel off her, she pushed my arm away and leaned over, deathly pale, making that tell-tale wretch deep in her throat just as her body heaved.
“Are you o–“
Out came her entire dinner, all over the tile floor–shiny yellow and orange globs of half-digested chicken nugget, floating in cloudy pools of fluid. All of it smelled like sour milk.
“Oh God, oh God.”
It’s really all a parent can say in that moment.
My husband heard my lament and dashed in, only to turn pale himself at the smell. Threatening to heave too, he disappeared.
I gazed down at the sea of sickness on the floor.
Daph looked like she was feeling better, so, grinding my teeth, I allowed some momentary bitterness to wash over me.
I’d be the one cleaning all this up.
“That damn Carmex made her sick!” I yelled at my absent husband.
I’d found Daphne earlier in the evening with the application end of a small Carmex tube in her mouth, looking like she’d just swallowed a sample. Jer contacted Poison Control and according to them, it should be fine, no need for an ER visit but she might feel ill.
So there it was.
I got all the vomit cleaned up–forgoing a writing sprint I’d looked forward to in a virtual writing retreat happening that week– and Daphne up to bed. I took a giant mixing bowl and clean towel with us, which in fact we did need. Daphne threw up four more times that night, roughly once an hour until her poor stomach finally calmed down and she was able to sleep. I spent the night next to her, guiding her toward the bowl, keeping her hair back, and wiping her mouth.
Fun times.
I consoled myself with the belief that, by morning, she should be fine.
That morning, though, she was running a mild fever and acting lethargic. I began to suspect we were dealing with something else.
“I don’t think it was the Carmex,” said Jer.
“Yeah,” I said. “I think she’s actually sick.”
At that point my stomach clenched with an old, familiar fear.
Yep, it turned out Daphne had a stomach virus. Probably the norovirus making its brutal rounds through her school, from one poor child to another.
“It’s so bad, people are pooing themselves,” her aid had warned me.
Oh Jeez.
Luckily, Daph didn’t throw up again that day, and she drank plenty of water and was able to eat a little bit the next day. By that time, her fever was gone and she was on the mend, though she needed a lot of rest.
Ordinarily, this wouldn’t be a huge deal. Kids get sick; it happens. Thankfully, this was only a 24 hour bug, so we got off easily this time.
But the catch here is, Daphne is nonspeaking. That means, she can’t tell us what exactly hurts, or how exactly she’s feeling. We can only know by her behavior and body language, and even that sometimes is deceiving because of her sensory processing disorder; I don’t think she always processes or recognizes pain in the same ways we do. For example, the entire time she was down with norovirus, she never curled up and clutched her stomach, the way I did when I came down with it myself two days later. I wouldn’t have known it was her stomach bothering her if she hadn’t thrown up.
This makes caring for an ill or injured child especially challenging. Even basic medical care is hard–Daphne won’t let the pediatrician look in her ears or down her throat during her yearly checkups. We can’t check her eyesight, and she’s never had a professional teeth cleaning. We all just have to go on the little glimpses we get and gauge her behavior long-term for any indications of illness or dysfunction.
It worries me constantly.
I have this terrible fear that something will be deeply, fundamentally wrong, and we won’t know about it, or we’ll realize it too late, or that the care we’ll have to force on Daphne at the ER or in a hospital will be traumatic–that she’ll have to be sedated with something like ketamine (suggested to us once by an Urgent Care nurse) and won’t understand and will fight us tooth and nail. I detest the thought of it. It makes me ill with worry, especially when she gets sick and we don’t know how long she’ll be down with a fever, or how bad her pain will get.
When she’s sick, I have to force myself to take calming breaths in order to control my anxiety. I know that seems ridiculous, but I am terrified of any medical trauma Daph might have to endure.
I wrote at length about this issue in a post last summer, so I won’t go on and on about it here, but suffice it to say, it’s a fear that still haunts me.
Our norovirus episode underscored that.
We are certainly not alone in this challenge.
I follow another autism family on Instagram. Their account is called Evie the Explorer, and Evie is Daphne’s age and also nonspeaking. Lately, her behavior has changed dramatically–she’s become more aggressive and resistant. She’s refusing to go to school. Her mother shared that everything about her daughter’s behavior “screams WRONG WRONG WRONG,” but they don’t know what’s going on. Her family and school team have prepared a list of behavior changes and other data to present to the ER staff when Evie goes in soon for treatment. It sounds like most of her team is going to the hospital because Evie’s mother is afraid the doctors won’t believe her that something is wrong with her child. She needs an entire group who know her daughter well to argue for Evie’s welfare.
Her mother anticipates all kinds of tests for Evie but is determined to get to the bottom of the issue. She’s speculating that the problem could be gastrointestinal, or dental perhaps from an impacted molar, or headaches from eyestrain or migraines, etc.
All of this sounds familiar. I’ve had all these same concerns about Daphne myself.
This family is facing exactly what I dread we will face, some day.
My heart goes out to them.
On that note, I hope you and yours are well, and no one close to you has battled any serious illness during this cold and flu season.
Best wishes, and see you next week.
XOXO,
Jenn
Jennifer Shaw 