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Friday, February 28, 2014

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.

(with Translation)*

Truer than you might think.
Name: Miriam Alaina Tavares
Age: 10
Serial Number: 34178A-652
 "Missy M"
 "Missy MaGoo"
 "Stinkerbell" and "Tinklebell"
 "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.


"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.

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. 


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:


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

(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.


  1. Well done! *claps* True grace under pressure - you should carry slips of paper with the URL for this post on them, and whip them out to give to the starers you encounter. :)

  2. Only you could make this seem funny to those of us without a clue of what it would be like. I admire your strength.

  3. Your family continues to exhibit love, strength, and a positive outlook that the rest of us aspire to. Whether or not you are aware of it, you are absolutely WINNING, Erik...