Behold the Borg Queen

I remember when Miriam first came home from the hospital and, over the ensuing months, people noticed she moved a little differently. Her arms were stiff. Her motions were rigid and/or loose. She eventually rode around in a cool little chair with sweet traction wheels.

"What's wrong with her?" people asked.

People stare. They do it all the time. Some have even run into walls and lampposts staring at her, which brings deep satisfaction. Keep Staring, says a button she once wore. I might do a trick.

"What's wrong with her?" people ask.

My first thought involves creative use of profanity. My second thought is Nothing, why do you ask? My third thought is, Oh, you are curious as to the differences you've noted in our daughter's physical behavior, manifested in unusual hand and body motions? 

I am more than happy to oblige you, I say, pointing to a chair. Take a seat.

And then I pull out her dossier and make them read it.

DOSSIER

(with Translation)*

Truer than you might think.

Name: Miriam Alaina Tavares
Age: 10
Serial Number: 34178A-652
Skills: *CLASSIFIED*
Aliases:
 "Missy M"
 "Missy MaGoo"
 "Miriabelle"
 "Tinkerbell"
 "Stinkerbell" and "Tinklebell"
 "Mir-Mir"
 "Silly McGoofypants"
 "Grinny McGrins"
 "Screamy McShoutsAlot"
 "Screamy Meemee"
 "Foameo and Drooliet"
 "The Borg Queen"

The Culprit:

Hypoxic-ischemic encephalopathy: 

This is your brain. Any questions?

Damage to cells in the central nervous system (the brain and spinal cord) from inadequate oxygen. 

How this happened is a novel in and of itself and, unfortunately, not able to be told in full (yet) in a public forum until (behind my hand to you, whispering) that whole legal apocalypse going on right now wraps up (wink wink).

The Results:

Spastic quadriplegia with variable tone:

The fancy word for cerebral palsy. This includes our friend, Epilepsy. Imagine someone crawling under your skin and working you like a puppet - then they start shaking you around every so often.

Microencephaly:





"Seriously. It makes you look slimmer."

In Javanese, the word micro means "Baseball," ence means "Home Run" and pha is the past tense of "Might One Day Be Used For". The whole thing is capped by LY to make it a noun when it probably should be an adverb.



Cortical impairment:
Fancy words that mean "Eyes Bad!" This includes strabismus and stigmatism, which is seen in 87% of kids anyway so I just added this to the list to make things seem worse. 



If only. This would rule.

She tries to wear glasses, but they often fall off her nose and she bites them in half. Fair enough; we all need hobbies.


Profound hearing loss with cochlear implant:
We think she did this one on purpose, just because she's a brat. Seriously? Who wants enhanced ear pieces that allows the deaf to experience extraordinary listening ability?

Hella yeah.

Apparently what a cochlear implant
sounds like when first installed.

Dysphagia:



What exactly were you saying again?

Translation: She chokes a lot. She cannot protect her airway, and as a silent aspirator she can inhale food particles into her lungs. She's grounded from food, which on one level is envious because you avoid all of that exhaustive chewing. 

Micrognathia:

Hillbilly Jaw (my invention, protested by Mom), where the jaw sinks in over time and adds to trouble breathing.

Go ahead and call me a hillbilly again. I dare you.

A surgery is in her future, which is awesome because she loves stitches and adores pain and begs for boredom. She also loves sarcasm.


Nissen Fundoplication:

That would be THIS:

And not THIS:

Gastrostomy-Jejunostomy (G/J) tube with the occasional delayed emptying:

That would be THIS:

And not THIS:

Intrathecal Baclofen Pump:

That would be THIS:

And not THIS:

Or THIS:

Though when THIS runs out…

…we gotta replace it.


Bilateral Femoral Osteotomy:

That would be THIS (crotch heart not included):

And not THIS:

Note: Represents happiness

Modifications 
(includes, in no particular order)**:

This is actually a modification for Mom and Dad.
At least we wish it was.

* Verified by Sharla Tavares, whose word is law.
** Warning: Inside jokes and/or exaggeration may be involved.

Hulk Smash!

There's something to be said about the Caveman Theory in regards to parenting. The idea is that:

A father is, essentially, a caveman hardwired to protect his family.

A father is, essentially, inclined to feel more protective of daughters.

A father is, essentially, inclined to protect family members who are hurt or weak or vulnerable.

A father is, essentially, hardwired to kill you with his bare hands if you even think to look at his daughter the wrong way.

A father is, essentially, hardwired to kill you with his bare hands TWICE if you even think to look at his disabled daughter the wrong way.


It is a strange feeling. The raging, Hulk-like rage that rises in one's brain if I get the sense that my daughter is being maligned in any way is, to put it mildly…scary. Tearing someone limb from limb tends to be frowned upon in our society.

I feel bad for my son. The poor guy makes a mistake and I pounce on him like any well-meaning father of a teenager. My daughter, on the other hand, usually gets a free pass. Parents of kids with extreme physical disabilities are thrilled at the idea of their child doing anything interesting.

"I'm sorry to call you," the police officer might say, "but your daughter hit a guy's car with her wheelchair."

"That's terrible," I might reply.

"It knocked the brake free."

"Awful."

"The car rolled out of the driveway, careened across traffic, and crashed through the front window of the orphanage."

Long pause by me. "I'm sorry that happened, officer," I reply, "but that's the single greatest thing I've ever heard."

The Recipe That Changes Every Day

If you're like me, you can appreciate the gentle security of a list.

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 and illness or 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 6:00 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––

WWAAAHHHHHHH!!! MOMOMOMOMOMEEEEEEEEEEEEEE!

(Pause, moment of silence)

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

(Silence)

(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?