WEEK 10

I know I can’t go to José’s house
to help work on the car.
Duh, James.
I was just mentioning it, that’s all.
You don’t have to always jump down my throat
trying to snatch away my words
like they are bombs about to tear the world apart.
I’m just writing in my journal
like I’m supposed to do.
Jeez.
Do you think every thought I have
is about breaking rules?
Do you think every thought I have
is about how to drive you crazy?
Your squinched-up lips
and grouchy eyebrows
say yes.
Ugh.
Could you be more of a tool?
That is not a challenge.

Baby Signing Adventure.
A DVD left on the mat,
seemingly innocent
but like a time bomb
ticking ticking ticking
MILK MILK MILK
in a CUP CUP CUP
I LOVE LOVE LOVE
My MILK in a CUP.
MORE MORE MORE
MILK in my CUP
I LOVE LOVE LOVE
MORE MILK in my CUP.
Someone left this DVD for Levi
but as a punishment for me,
right?
Because, you guys.
This is worse than juvie.
I am not even kidding.
Five times he’s watched this DVD today.
FIVE TIMES.
Happy leg kicking away.
I can almost see the smoke
shooting from his ears
as that little brain of his works and works.
But seriously.
Baby Signing Adventure might kill me.
For real.
My ears will bleed from all those songs.
My heart will explode from running
to get away from Miss Jill
and her pointy talking fingers.
But Levi can’t get enough.
So thanks.
Whoever left it here.
I guess.

No, Mrs. B.
There is no way
no how
no where
no when
that Mom would ever
in one million years
allow a benefit to raise money
to help us.
Because we don’t need help.
We’re just like everyone else.
Or so she says.

I got home from school,
Marisol handed me a package.
An envelope with padding.
Can you fit a million dollars
in an envelope with padding?
I opened it and must have given her a look
because she laughed.
What are these?
Chains.
I can see that, Marisol.
For Levi. Come here. Help me.
We burrito-ized Levi.
I whispered the story in his ear,
the one about the dragon
and the knight who talks with his fingers.
Marisol unfastened the fabric around his neck,
the ties that hold his trach in place,
the ties that get ten times disgusting
whenever he barfs
or spits out his milk
or sweats
or all of those things combined.
Marisol gently pulled the ties away from the trach,
using her other hand to hold the trach in Levi’s neck.
One slip,
one distraction,
and the trach could fall out,
could mean no more breathing for Levi.
Hand me the chains?
I handed them over and she measured the perfect fit.
Cut right here.
I took the wire cutters from the package.
I cut right there.
Marisol connected the chain through the trach
and around Levi’s neck.
No more yucky ties.
She smiled.
So easy to clean.
I smiled.
And look at that cute little neck!
Levi smiled.
OK. So. Not as good as a million dollars.
But close.

There are sharks in my throat.
Tiny sharks.
With supersharp teeth.
With laser eyes.
They are destroying my throat.
From the inside out.

There are trolls in my head.
Evil trolls.
With superheavy hammers.
With thundering fists.
They are destroying my head.
From the inside out.
It’s possible I am dying.
Infected with sharks and trolls.
But I have a math test today.
NO REST FOR THE WEARY.

I can hear them downstairs.
Mom has that voice.
The one she uses when she’s really mad
but trying to be calm.
I call it her
I Will Kill You, But in a Superpolite Way voice.
Tonight’s nurse is getting a face full of
IWKYBIASWV
I hear the words go-bag and organized
then the fake laugh that is like
IWKYBIASWV’s sidekick.
The nurse makes a pshhh noise
and I want to yell,
Jump back, lady!
You’re about to get murdered with words!
But I stay at the top of the stairs
listening, listening, listening.
No one messes with the go-bag.
It has everything Levi needs if we have to leave the house.
Not that he ever does.
Except for doctor visits.
Or emergencies.
The go-bag is a work of art.
Labeled supplies, rescue meds, extra trachs,
even a handheld suction thing.
You don’t touch the go-bag.
You don’t go near the go-bag.
The go-bag is perfection.
It’s like a tiny hospital
in an ugly red duffel.
I think the nurse tried to reorganize it.
MISTAKE.
That go-bag is the most perfect thing
Dad ever created.
Except maybe me. Har.