Lost? Here You Go. You Can Thank Me Later.

Saturday, February 22, 2014

The Recipe That Changes Every Day

If you're like me, you can appreciate the gentle security of a list. Strange as it may seem, reading the instructions of a board game was often as much fun as the game itself. Especially when there was nobody to play with anyway.

So I can be pathetic. Leave me alone.

Living with a child with special needs, especially one with cerebral palsy, is like opening a cookbook each morning, only to discover all the recipes have been scrambled. Cookies that require flour, butter, sugar, baking powder, salt and eggs now, today, requires wheat flour, oil, unsalted butter, baking soda, applesauce and those little sticky caramel clusters found on the bottom of a Cracker Jack box. Minus the prize.

What does that mean? For a child who is deaf, who takes a half-dozen medications before bed, is tube-fed a special diet, and is still recovering from hip surgery, this means one thing: you cannot predict how the night will end. You don't know if you're going to open the oven and find a tray of cookies, or open the oven and find a sheet of glowing rocks with a note that says:

As if you were hungry anyway.

It takes about 30-45 minutes to get Miriam to bed each night. This includes making a new batch of her liquid food (with exact-by-the-drop measurements to manage her special keto diet), removal and replacement of any orthotics, hazmat control (thanks a ton, Gods of Continence), crushing / dissolving / injection of medications, getting dressed, "power puffs" (inhaler), brushing teeth, and the required nighttime routine that pretty much has to be done the exact same way. If this routine is NOT performed the same way, Missy McOneWayStreet will not fall asleep. I kid you not.

This seems typical for a child with CP, because let's face it - if you cannot control your world, then routine becomes essential. Break the routine, and you pay the price.

When you see this face, kiss your night goodbye.

So, when the stars align, Miriam drifts off to sleep around 9:00 pm and wakes up around 5:00 am. Most nights, however, she will awaken closer to the hour when you are in the deepest moment of sleep. The very deepest. Not the gentle I'm-almost-up-anyway kind of sleep, but the kind that makes you cry when you are torn out of it.

Things are obviously worse for Missy McStinkypants, as stomach issues, joint pain, coughing/choking, seizures or other charming delights…or just plain insomnia…makes many nights a real adventure.

When she does awaken, she does not open her eyes gently and wait patiently for assistance. No. She realizes that 1) no one is going to help her until she communicates and 2) she realizes the only communication she really knows is screaming and 3) without her hearing aid on she thinks nobody can hear anything, so she'd better scream.

Better safe than sorry.


Imagination Time! 

Close your eyes and imagine yourself all snug as cozy in your bed. How does that feel? Comfortable? Now imagine, in this moment of serenity, when the cares of the world begin to––


(Pause, moment of silence)

AAAHHHHHHAA! (higher pitch) AHHHHHHHOOOO! (higher still) EEEEEEEE!


(Laughter at herself because, hey! look at the losers scrambling at 2:00 a.m. to obey my every command!)

I scream and you jump. What exactly don't you get?

No comments:

Post a Comment