Sometimes, it’s exhausting

Naomi had turned her back for less than a minute. It was enough time for Shaina to empty a bag of baking powder over herself and the kitchen floor. She mixed in a vial of blue food colouring for good measure. I arrived home to Smurfette and her exasperated mom. 

Shaina is delightful. She’s fun, giggles and bear hugs. But her brain changes channels like a remote control with a short circuit. She can exhaust us before the day even starts. The baking powder incident helped me realise that you only know Shaina the Smiler. In the interest of balanced reporting, I figured we should share a glimpse of Shaina the Tornado. 

If you find it difficult to read the following paragraphs, it won’t be because I’ve lost my grip on grammar. I’m either sleep-deprived, interrupted by Shaina while typing or have lost my mind. It’s the school holidays, so it’s probably all of the above. When you exhale at the end of the post, imagine how it feels to live it. 

Sunday 5:45 a.m. 

Faint giggles. One eye opens (her left eye takes a little longer to get started). A pudgy hand reaches out from under the covers. 

“Phone!” 

She starts every morning with a massive smile, followed immediately by her demands. 

“Phone!”

“Good morning, Shaina! Did you have a nice schloff (that’s Yiddish for sleep)?” 

She responds with twinkling eyes and a cherubic grin.

“Modeh ani…” We sing the waking prayer and wash her hands in the traditional manner. I manage to squirt two syringe-fulls of medicine down her throat. 

“Cap!” She expects applause after each of her eight daily medications. 

“Pho-oh-oooown!”

Ever since her first ICU stint, where we used YouTube to keep her from yanking out the IV, she’s been hooked on videos. None of our other kids was allowed anywhere near YouTube until they were much older. 

The high-pitched voices of amateur kid actors shrill through the room. “Ice cream, ice cream, come and buy some ice cream!”. Then it’s “Ooooh… the Hokey Pokey…”, then a wedding song, a different wedding song, the original wedding song, a third wedding song. No video plays past the hallway mark.

“Sing!” She expects me to sing the lyrics of songs I’ve never heard. Somehow, she knows them all. 

“Chippies! Peez!” (i.e. “please”- her hands together in supplication).

Crash! She hurls Naomi’s phone across the room- the sign she’s ready to get out of bed. She trots over to her brother’s room.

“Yudi! Genup (get up), it’s morning!” (Poor kid, it’s Sunday, and he wishes his sister had come with a snooze button”.)

Thirty seconds later, Yudi is still in bed. She whacks his head and marches out. 

“Let’s play!” she instructs me. She bounds over to the toy cupboard and pulls out a yo-yo. I’m relieved. How much damage can she do with a yo-yo?

“Nook (look), Tatti, I do it!” She’s so proud. The yo-yo crashes to the floor, but she drags it back and forth along the ground as if she were a pro.

Drops the yo-yo. Pulls out a bucket filled with wooden blocks. 

“I make tower”. That’s promising. I squat on the floor and pile a few blocks. She takes off for the bathroom. 

I hear her open the tap. Water rushing. “Okay, Shaina, that’s enough.” No answer- just gushing water. I gather myself from the floor and head over to stop the impending flood. She’s out the door before I even close the faucet. 

Run to try to stop her from waking her mom. Too late. She grabs a headscarf as I hustle her out of the bedroom. I tie the headscarf on her head and joke that she looks like Mommy. 

“Pitcher!”  

Never one to miss a photo op, she wants me to record her new look. I snap the shot. She yanks off the scarf. 

Next stop: the stationery drawer. Pulls out a roll of stickers and toddles over to me. For three minutes, she carefully places stickers all over my forehead. She laughs hysterically as she places each one, and I am relieved that she is in one place for more than thirty seconds. 

Midway through sticker number I-don’t-know, she dashes off to a different bathroom. I hear splashing and run over to prevent another deluge. 

She doesn’t mind. She spots a ruler and orders me to the wall so that she can measure my height (something she’s learned in the doctor’s rooms). 

“Yudi!” 

I feel for him, dragged out of bed so she can measure how tall he is. Somehow, we’re both “thirty-five”. Is that inches or centimetres? She won’t tell. 

But she’s now taking orders for breakfast from her play kitchen. She chuckles as she scribbles my order for fried pickles and smashed potatoes. Regardless of what I order, the scratches on her notepad will all look the same. She whirls around and brings a plastic tray laden with imaginary food. I exaggerate how delicious everything is, and she roars with laughter: “Pepper, salt!” That’s my cue to feign disgust and pretend to choke on what is apparently altogether inedible. 

She scoots over to the real kitchen. Pulls out a broom and a spray bottle of cleaning liquid and starts to clean the floor. It’s so cute, I pull out my phone to video the moment. 

“Phooooone!”

The broom clatters to the floor. I surrender my device. The Hokey Pokey/ wedding/ Chanukah/ kiddies whining/ wedding/ dentist visit/ Hokey wedding Pokey playlist starts. 

“Sing!”

I check my watch. 

6:20 a.m. 

I’m ready for bed. 

Parenting a child with neurological challenges is deeply rewarding and utterly exhausting. 

[Check out the video of Shaina’s other Sunday’s Sunday antics here.]

Early morning artwork