“You spot for Daddy while I back the trailer down into the water, Sweetie.”
“Okay, Daddy!” she says excitedly. She’s a big girl and likes to help out with these things. So I let her out of the car seat and let her stand up in the back seat.
“Both hands on the seat back, Stinkerbell,” I remind her. “I don’t want you falling over if I have to stop suddenly.” Dutifully, she raises her stiff little left arm and slowly, agonizingly extends it, propping it on the seat back.
I’m not going to be stopping suddenly, and she can hold on just fine with one hand, but that’s not the point. She needs to work on arm extension.
I back the trailer into the water, set the parking brake and get out. I let her out of the back seat and lead her to the water’s edge. She sits down in the shallows as I wade out and pull the jet ski back to shore.
“Catch the rope, Sweetie!” I call out, tossing her the tether line. The coiled line splashes her and she giggles. I tossed the line to her left, so that she has to twist her torso to the left and rotate her weight over her left hip to reach it. That’s why I threw it where I did.
She reels in the line, hand over hand, because that’s how big girls do it. At least that’s what I tell her. The alternating movements help her build coordination.
She can’t really grasp the line in her left hand, the fingers clenched in a tight, spastic little fist, so she compensates by pinning the line to her left thigh and dragging it back with her clenched fist. She’s a smart little girl, and thus very good at finding ways to compensate. She’ll always figure out the easy way to do something.
But easier is not always better, and so I’m always after her to do things the right way. It tries her patience sometimes.
Hauling in the rope soaks the splint on her left hand, but I don’t much care. It’s made of neoprene, after all.
Not fifteen minutes ago, the clerk at the convenience store asked her about the splint. The clerk, like everyone else who meets KatyBeth, was taken by her blue eyes, politeness and infectious enthusiasm, and cooed sympathetically when she saw her splint. “How did you hurt your hand, sweetie?”
“I have cewebwal palsy,” KatyBeth said matter-of-factly. “I have a bwace on my weft ankle, too!”
The clerk closed her mouth with an audible snap and blushed like a tomato. I winked at the clerk as I took my change and turned to go.
“Thank you, Ma’am!” KatyBeth called out as we left. “Me and my Daddy are gonna go wide the jet ski and cut up!”
And just like that, the clerk went from embarrassment and pity back to being totally enchanted by my kid. She’s good at that.
I gently beach the jet ski on the shore next to the landing and urge KatyBeth up the steep concrete ramp. It would be easier for her if I held her hand as she walks. It would be easier for me to just put her back in the truck for the drive back to the parking area. But walking this incline works her leg muscles and encourages her to shift her weight forward over her pelvis.
“Hurry up,” I chide teasingly, goosing her in the left butt cheek. She giggles and totters faster. For her, it’s a goose in the hiney and a fun game. I happen to know that a simple physical cue like that promotes better hip and leg extension, and lengthens her stride. Her limp becomes less noticeable.
At the top of the landing, I park her on a picnic bench and hustle back down to my truck. I quickly pull the truck up to the parking area and choose a space. I have my pick of spots because we’re the only people out here today, but I pull well down the parking lot anyway.
I park the truck and lock the doors, and call KatyBeth over. “Time to put on your life jacket!” I call out. “Get your little booty over here!” I watch as she slowly pivots around and worms her way backward off the bench. She has to extend both arms in order for her feet to touch the ground.
She totters across the rolling lawn, carefully negotiating the uneven ground. There are closer parking spaces, ones that would have necessitated only a short walk across dry pavement, but the uneven grassy surface is more of a challenge. Besides, KatyBeth likes the grass.
At the truck, I pull off her tee shirt and shorts, and quickly remove her shoes and ankle brace. On go the Dora the Explorer aqua shoes and sunglasses to match her Daddy’s. I make her lift her arms over her head to slip the life jacket on. It would be just as easy to work around her left arm, tucked in at her side as it is, but this way we have to do arm extension. Always, always we work on arm extension.
I take her hand as we walk down the ramp. Her aqua shoes don’t offer the best ankle support, although the sole of the left shoe is a bit stiffer, thanks to an insert I fashioned for it. Her life jacket makes her a bit top heavy as well. Falls are things we expect her to deal with, but I’m not going to set her up for one.
We wade out into the water, and I stow the collapsible cooler in the storage compartment, zip my keys and wallet into a Ziploc bag and toss them in on top of everything else. KatyBeth stands in the water, holding on to the aqua-step on the back of the jet ski. She looks pensive.
She’d rather not climb onto the jet ski herself. She remembers what happened last summer, when she lost her footing on the step and bashed her mouth on the boarding handle. We both remember the terror in her cries as the blood ran down her chin into the water.
But picking her up and carrying her around does not teach her independence, and so we will do this the hard way. She has to reach up with both hands and grasp the grab rail, and lift one foot and place it on the step. From there she can step up into the foot well and make her way along it to her spot up front.
I carefully open her left hand and wrap the fingers and thumb around the grab rail, and hold it in place as she boosts herself up. I cried harder than she did the last time, because I knew that she had fallen because I got careless.
I will not be careless again.
I lift her onto the seat and get her settled in, and push the jet ski away from the landing. I clamber on board behind her, fit the lanyard of the kill switch around my left wrist, and turn on the choke. KatyBeth wants to work the throttle, as usual.
Instead, I make her press the start button, as usual. I know her right hand works just fine. She needs to use the left hand. So I encourage her to extend her hand and engage the starter, which she does, laboriously extending her left arm and pushing the button with the knuckle of her index finger. Opening her hand all the way requires supreme concentration. I am happy if she simply tries.
The jet ski roars to life and she squeals in delight. I let her work the throttle now, since she’s itching to do it anyway. It’s her reward. She pauses and looks back at me. “Say it, Daddy!” she prompts.
I grin as I wrap her left hand around the handle bar and fit mine over it. I plant my feet, pull her close against me and say what I always say.
“Git it, Katy!”
Cackling gleefully, she gooses the throttle, my jet ski rockets forward with an angry snarl, and soon we are scooting down river at nearly fifty miles an hour. Katy’s grin meets in the back, and her ponytail whips at my face.
I let her steer, taking care to keep her left palm firmly pressed to the handlebars. The vibration is good feedback for those dormant nerve pathways we’re trying to awaken. We do lots of right turns to, once again, extend that left arm, and we also do plenty of flat spins to the left, to teach her to shift her weight.
And for the next few hours, I am alone on the river with my daughter, and we play with a purpose. We do flat spins. We do 360′s. We leap
our own wake. We nose dive and the water cascades over our knees before the Kawasaki overcomes its downward inertia and leaps from the water like a broaching marlin.
And my daughter laughs.
We zoom about, and I let go the handlebars now and then and let her steer. We go left, and we go right. Occasionally, she cuts it a little hard, and we wipe out.
But that’s okay, because then we can swim for a little while, and then practice getting back on. Sometimes she’d rather swim when I’d rather ride. She always wins.
It’s hard for KatyBeth to swim wearing this life jacket. The thing is designed to roll her onto her back and support her head, and it takes some doing to roll onto her stomach. When she kicks, she gets excited and the spasticity kicks in, and she just turns in a circle, one leg madly kicking while the other just sticks out rigidly.
So, we play in the shallows a lot, where I can hold her and coach her. When she’s calmer, she can exert some mastery over that uncooperative left leg and arm. Right now, she frog kicks. Once she has mastered that, we’ll work on a bicycle kick.
And when she’s ready, we climb back on the jet ski in search of another stretch of river to explore. We stop and let a water moccasin swim past, not twenty feet in front of the jet ski. I point it out to Katy, and reassure her that there is nothing to fear. “You don’t have to fear a snake you can see,” I tell her. “Just be careful, and give them room.”
On another bend down the river, a six-foot alligator suns himself on an inviting white sand beach. I cut the jet ski off and drift in the current. I poke Katy and point, and she squeals in surprise, and then starts edging backwards, snuggling closer to me.
Her grandmother has taught her that snakes and alligators and dogs and rambunctious children and God knows what else are things to fear. Things that can knock her down are things to fear. Rough housing is frowned upon, because after all, my daughter is delicate, and handicapped to boot. She could get hurt.
I will not allow my daughter to learn fear.
And so we sit and drift with the current, and I point out to her that snakes and alligators are to be respected and given their distance, but not feared. Strange dogs should be given their distance too, until you know their intentions, but not feared. If a rambunctious or rude child knocks her down, we go play with someone else. But we do not fear them.
And as we get closer, the alligator swims away, just like I told her it would. “Because it’s more afraid of us,” I explain.
And on another stretch of beach, we bury our toes in the sand and have a picnic. We eat fruit cups and ham sandwiches and her favorite, peanut butter and cheese crackers.
I toss a few crumbs into the water, and KatyBeth watches in fascination as the bream swarm from the deeper waters and devour the remnants of a cracker.
I coax her to hold one under the water, and the bream swarm around us like piranhas, eating a peanut butter and cheese cracker right out of her hand. She giggles and squirms as the bolder ones nibble at her feet and legs.
It’s days like this on the river that I live for; a chance to teach my kid what every kid should learn in childhood. Life’s little lessons that she misses out on, because everyone insists on treating her like a China doll.
Puppy teeth are sharp, but puppy slobber possesses magical healing properties.
Trees are a joy to climb, even if it means falling out of them occasionally.
Mud pies are fun to make, but not edible. But go ahead and taste it if you must, Little Miss Hard Head.
Snakes and lizards and alligators are cool, when viewed from a distance.
The outdoors offer a world of wonders to explore, but pack your skeeter repellent and sunscreen.
Peanut butter and cheese crackers are even tastier when you eat them on a beach in the middle of nowhere, and share the leftovers with a school of hungry fish.
Pain only lasts a little while, and bruises fade, but regret lasts a lifetime.
She doesn’t look it, but my daughter is much tougher than people realize. She’s much tougher than she realizes, and that’s what I try to show her. My daughter is the toughest person I know.
She just happens to have a left leg and arm that don’t work so well, but we’re working on that. Probably always will be.
And as the shadows grow long and the crickets start singing and the sun sinks behind the trees, I tell KatyBeth it’s time to go. Naturally, she whines and frets, and she cries when I load her onto the jet ski, but by the time we reach the landing, she’s fast asleep, head resting against my left arm.
I manage to beach the jet ski at the landing, tote her to the truck, remove her life jacket and buckle her into her car seat without even waking her. The drive home is quiet, giving me time to contemplate the sunburn I’m going to have in an hour or so. My shoulders are already tightening. To make matters worse, I discover that I’ve had my cell phone in the pocket of my swim trunks the entire time. It’s ruined.
At the house, I manage to back the jet ski trailer into the garage without KatyBeth for a spotter, and I tote her inside like a sack of potatoes, limp and still sleeping soundly. I lay her on her side of the bed, remove her swimsuit and dress her in panties and the SpongeBob EMS tee shirt she likes to sleep in.
As I tuck her in, she opens her eyes and yawns sleepily, and murmurs, “I want Dora, Daddy.” I fetch her Dora the Explorer doll from the floor beside the bed and she sleepily takes it from me…
…with her left hand.
And that was my day yesterday, well worth the price of gas and a new cell phone.