nonverbal learning disorder sucks

it does. i'll say it.  it sucks.
how my heart hurts for her some days.
because it's just so unfair that the basics of life are so hard for her.

"we never said what we were dreaming of..."

and i can get so mad. so angry, when i see it, when it screams at me- the hard parts.  and then i can't.
i can't live in that place of magical thinking.  i can't pretend.  i know that- it's just there.  with us.  like her blue eyes and her thick blond hair.  the way her mind works it makes mine have to work so much harder.  because we start from different places.  we speak different internal languages.  and i hate that.  i hate that i don't 'get' her- that she doesn't 'get' me. 

the day started with song- zoe shining- the love in her pouring out in songs as we sat on the bed and harmonized and drummed on the bed frame. and i cried because it was a golden moment.  a moment of connection.  and i was okay with an hour of music, i was okay with not making her write, i was flexible, i followed, she led.  but then how soon it crumbles. a word i spoke confused her, and made her mad.  engine hit red.  and the joy of the music ran out through the cracks in the window.


"sun turns the evening to rose,
stars turning high above us"

"i watch the stars from my window sill.  the whole world is moving and i'm standing still."

then hours of dissection.  together we mapped out the feelings, the reactions, the sticky, the change from green to yellow to red, like leaves, her internal process of dying into winter.  the winter of our discontent.  together we map out what hurts and what helps and what is regulated and not regulated and how it feels to her and how it feels to the people in her life.  how it feels to me.  to friends.  to siblings. that actions, her actions affect other people.  that we are connected, crucially connected, even when she doesn't feel it.

and it was as if it's all new. as if it's a revelation.
the thing is, it is.  because with neuro-cognitive dysfunction, these ideas feel new.  because the natural is not natural for her, it's not even learned by experience, it must be taught. again.  and again.  and, once, again,  and again.  and this is why we home school.

"i know it don't come easy, but i love you, i do."

100 sit ups later- she was back- back enough to know she's hungry.  like a pre-verbal toddler who gets crabby when they're hungry- the disconnect between sensation and communication.  100 sit ups and an early lunch and we were back on green.

so i went to make a house call for a bad bronchitis in exchange for a tank of propane.  it was necessary.  i wasn't gone long.  but long enough.  for things to fall apart.

because hide-and-go-seek is hard when you're visually-spatially challenged, because it's hard when you're not sure where you own body is in space, because knowing what people mean, what their eyes say, and their voice, and their face, and the way their body stands and gestures, and their words, is hard and exhausting.  why can't they just use words- she thinks- it would all make so much more sense.

"say you're sorry i can take it. 
let it bend before it breaks."

it wasn't that big of a deal.  it's not the end of the world.  except that it is her world.  it is our world.

"all of these lines across my face, tell you the story of who i am
of how i got to where i am."

so we collected her bits in the car and went home.  i took a moment.  she went to her room.  i didn''t cry.  i didn't yell.  i just felt the lines grow heavier and deeper on my face and i reached for my nvld-book by kathryn stewart. because it helps me remember why she struggles to hide and to seek.  because it makes me feel a little less crazy.  a little. because it orients me back to this life that i gave birth to 12 years ago.

and even today, i found myself walking through the delivery that september 11th and to the months that followed as i tried to be a new mom and a medical student.  even today i found myself stretching to remember if she pointed as baby- if she attempted nonverbal communication back then, if i was ignorant or not involved enough in the theory of her mind.  even today i thought, if only i'd paid more attention, why did i not teach her to point back then?

guilt shows up trying to share the burden that grief holds, but it never helps.

i read page after page and found both understanding and overwhelm.  but mostly i am overcome by my deep, deep love for my little girl, and how scared i am about her growing up and leaving me someday to find her way in this giant, scary, mostly non-verbal world. 

"the night is here, the day is gone, and the world spins madly on."

i now remember that she did write today.  not copy work.  she wanted to write out the song lyrics that were going through her head.

"our God is an awesome God, he reigns from heaven above with wisdom, power and love, our God is an awesome God!"

it's dark.  the lights are out.  the candles are on.  the time is 'now'.  i will rest in this - under the shadow of His wing.