“Everything is cancelled.”
All of his questions have the same response. I don’t know – everything is cancelled. We can’t do that right now – everything is cancelled. We can’t go there right now – everything is cancelled. When you have a sensory kid with CVI who exists on certainty and routine and predictability and structure, providing normalcy and certainty right now feels impossible. In this time of coronavirus, his CVI, his sensory experience, his worries, are not cancelled.
If your child struggled with any amount of anxiety before coronavirus, it is likely heightened now. All this uncertainty does not help. We’ll do that after the virus, you say, not knowing when that might be or what that might look like. Right now, there is a lot of worry over the “viress,” and that worry has transferred to his person. Every little bump, bruise, scrape, stub, or the thing you cannot anticipate, is a Big deal. We talk about the viress as a Big problem, it has disrupted every aspect of our lives. We stay home to keep everybody safe. What has set in is a newfound hyperawareness and concern for himself.
By contrast, a boo boo is small problem.
“Mommy my stomach is gurgling.”
“Mommy, mommy – what are these marks on my tummy?” pointing to the tiniest freckles left over from a summer at the beach that feels forever ago. “Those are from the sun...”
“Mommy, what’s this green spot on my arm??” Stretching his right arm out long, he holds his finger firmly atop the greenish line that makes its way along the inside of his arm. Freckles, his own veins, white patchy dry skin from so much hand washing and not enough hand lotioning. Wearing lotion was another Big deal but this time he conquered it astonishingly fast, victory.
In the realm of the coronaviress, nothing feels safe. Walking down carpeted stairs. Maneuvering (or running) between a marble countertop and the kitchen table. Kicking a bright colored ball outside. Running anywhere. The whole world, at every turn, is an unpredictable patchwork of unintended obstacles and collisions. “My knee hurts!” after running. “Mommy my eye hurts a little bit.“ “Ow – I bumped my arm on the wall” (usually it’s the kitchen table at every meal). Or something as benign as… peeling an orange: “Mommy – I hurt myself on the sharp part of the orange!!”
As soon as the closures set in, it struck me that it was not only my priority to keep us coronaviress free, but to keep him safe from the smallest accident or injury. Reassuring visits with the doctor for a child with an elevated risk, was not an option. Parents of children with disabilities watch ever anxiously over their child, all the time, everywhere, no matter what. That constant watchfulness is esacalated too. Obstacles, collisions, and now add to the list, passersby who are not mindful of social distancing. I watch for it all, backward and forward, like some thief stealing through the night with my child.
A sensory kid needs a regular diet of reassurance. In the time of coronaviress, this need has been near constant. When that fails, is when the creative thinking kicks in.
One day he went on endlessly, one after a(nother) about his concerns over a freckle, a bump, an elbow, a toe, a cheek, a white spot. Is there anything on my lip? Do you see anything on my foot? My toe looks red – No, it looks pink like all the other toes. After listening all day long, this time it was a boo boo on his arm, I broke out the Magic stick. The days of wearing real makeup are long gone but I unearthed an old cover up stick, long since past its expiration, chalky and exuding a pinky tinge.
“Why don’t we try Magic stick on that boo boo?”
“What’s Magic stick??” – he was hooked.
He still spent all afternoon frequently examining the pinkish Magic spot on his arm, but he was able to cope. If the Magic stick did not exactly erase the boo boo, it was diminished enough in his brain to make it Ok, unbearable.
“Mommy there’s something wrong with my foot when I walk like this..” as he demonstrated by toe walking into the kitchen on his left foot (always the left). There was nothing visibly wrong. No memorable crash or obstacle or accident came to mind. There was not so much as a mark or scrape or discoloration, no reaction to his foot being prodded, touched or squeezed. Hmmm…maybe it’s a bruise on the bottom or something. It’s not bleeding, the bone’s not sticking out. Why don’t we take an X-ray so I can show you? Using the handy, reliable, omnipresent iphone, I swiftly googled “child foot x ray,” saving the image. We “took“ the X-ray using the phone’s camera, then examined the X-ray photo together.
“Look – these are all the bones inside your foot. They fit together, kind of like a puzzle. Everything is in place. Nothing’s broken. See? Your foot is just fine.” He examined the backlit foot X-ray himself for several seconds, then quietly continued his toe walking limp out of the kitchen and on his way to… the other room of the house.
Wearing a bandaid has been on the list for at least a few years. When your child has frequent visits with medical professionals and things like blood draws, shots, bandaids are important. “After a shot, your body is open and a bandaid helps stop bleeding and keeps germs out so you don’t get sick.“ Wearing a bandaid needs work but there is one bandaid he has begun to tolerate. Wellys are lightweight and brightly colored and cleverly branded as “Bravery Badges,” “Superhero Supplies,” or sold in “Adventure Kits.“ My favorite is the Human Repair Kit, which seems to be in short supply these days.
Coronaviress has turned his world upside down. Any time he talks to anybody online, it’s “I miss seeing you – I hope you aren’t getting the viress!” When he first said this, as with all of his social interactions, I struggled with how much to intervene, interrupt, guide, shape his communication. The first few times I tried explaining that everybody already knows we do not wish the coronavirus on them. The other person automatically assumes this. It would be like telling someone at the close of an exchange – “Bye – hope you don’t get cancer!” These sentiments are intrinsic, assumed, and unspoken. It is not something we need to say. And that’s when I realized – that maybe it is something he needs to say.
“I hope you’re not getting the viress!” Every time.