I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Saturday
Sep082012

Ode to my Hero

our Hobbit baby
curly hair, round face who liked two breakfasts

Brown-eyed toddler, draped over me,
watching Dick Van Dyke dance to 'Me 'Ol Bam-Boo'
in Chitty Chitty Bang Bang 
again 
again
again

Now my 6th grade boy plops himself in my lap
he wishes I were strong enough to pick him up,
he is nearly my height, same size feet and hands

When my friend talks about macaque monkeys,
my boy asks, What kind? There are 24 different macaque species.

He asks why his sister cries
(although he tries to make her cry other times)
He catches house spiders in her room so she can sleep
and scares her with talk of ghosts

Long ago, in a Brooklyn December,
he wanted to know why there were Pilgrims on the sidewalk. 
(Pilgrims with yalmulkes under their hats)
then, he wore a yalmulke to school for a week

His first words? "Tickle, tickle" as he ran after 
eighty pounds of German Shepherd plumed tail

He bicycles with me, thin legs pumping
in his ultra-wide, neon skateboard sneakers
thirty miles
hilly roads
forty miles.
with every small and large joint paining him,
without complaining
so that I'd know 
racing me up the hills

Rising early for football with his team
proud of his jersey, his pads, his tackles
running with friends in the street
searching for the mysterious swamp where someone once died, they say
where they will build a bridge
and a fort 

He read The Chronicles of Narnia at 9
when he could still read without those hateful mind monsters
Grew to love Shakespearean tragedies 
when home from school on new medication

stayed up till midnight one mid-summer night
for the fight scene in Hamlet
Said it was worth it
and closed his eyes on the car ride home 

Staged his own Egyptian mummy exhibit
after visiting the Metropolitan Museum
his own zoo on his bed after a Bronx Zoo trip
and his own sword fights
after seeing Jedi warriors fight

Writes raps (don't call them poems, Mom!)
about the mean games his diseases play on his mind
and tells his teacher that he climbed out his bedroom window one crazy night
and nearly killed himself

Back when needles meant allergy shots
He'd pretend the alcohol swabs were excruciating
and that the needles felt soooooo good

Now, he watches as the nurse slides the IV needle into his arm
he lies down for slim acupuncture needles
or waits for needles to collect his blood
6 vials
9 vials
can't find a vein

swallows his medicine, vitamins, probiotics, remedies
so many pills of red-yellow-blue-white
day after day, morning, night

the other evening, he came in early from outside
because he felt the rage
that had taken him the night before 

he needed to be far from people
I told him 
how proud I am
of his awareness, his control

the way that he is handling this disease
(that confuses so many)
How would I handle a Lyme Disease that blew my mind away at times?
Lyme that curdled my joints
and PANDAS that made me shrivel whenever a fork scraped a plate
that made me clear my throat
again
again
again 

In February of 2010, he cried out,
"This is a nightmare! I just want to wake up!"
I promised him he would get better
that we would figure out what was wrong

I still believed in band-aids and kisses
We had no clue 
We are still trying to wake up today

But this boy keeps fighting

What is your meaning in life? I ask,
And he says, it's to fight and get better

he wills it
We work for it
We're a team and we'll beat this thing 

to save my strong little Hobbit 

 

 

Note: there is a new book out that I intend to read: How Children Succeed: Grit, Curiosity, and the Hidden Power of Character by Paul Tough. My son has grit, curiosity and character. I know he will succeed.

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