"we write in order to understand"

tonight i'm not even sure what/how to write

not even sure if i want to

but then i hear in my head a portion of a quote i previously shared,
"We do not write in order to be understood;
we write in order to understand.”

so maybe if i write, i'll better understand
what i'm thinking
what i'm feeling

all the while i'm fighting back tears

because tomorrow
Davis won't be at preschool

this week the light shown brightly
on a fear i had tucked deep away

what if this undetermined seizure disorder
and high dose of anti-seizure medication
makes it impossible difficult for Davis to progress normally

we had really hoped that he would have grown out of the seizures by now
and that he would be weaned off the medication

but he hasn't
and he is not

but his heart is big!
he hugs easily
he knows his numbers, colors, shapes and many letters

and.tears.stream.down.my.face

because his behaviors and social interactions
are
difficult
to
manage
without constant 1-1 interaction

which isn't feasible in a mainstream classroom

but you should see him recite his memory verse with actions!

i could see it in both Avery & Carver tonight
they were different
less annoyed by Davis' behaviors
more compassionate
less frustrated
more understanding

but it's still hard to cope
and to know what/how to discipline
and what to accept/ignore as his uncontrollable norm

my heart aches
and wonders
this journey we have been on for almost 3 years
where will it lead to in the next 3 years?

and i give so much thanks for Lance
calm. cool. collected.
home with Davis full-time everyday
his M/W/F morning personal time (during preschool) has vanished

we are entering the universe of government red tape
hoping Davis will qualify for a preschool environment that can accommodate
his.special.needs

he is a special boy
double dimple davis
full of fast joyful energy
super-human upper body strength
marvelous monkey climbing skills
consuming large volumes of chocolate milk
outstanding napper/sleeper

oh but in contrast it then bothers me so much
when i watch him choose to spin in circles
or quickly shake his head back and forth so many times
does that help him feel better?
because watching makes my head feel like it's going to pop off

i fully recognize that the anti-seizure medication is effective
because it impacts his brain
it.is.impacting.his.head
how does that make him feel?

last night i found myself reading all the internet info about keppra again
all the warnings
yet all the people grateful for it's effectiveness
what a quandry

we don't have a choice about the meds
although we haven't seen a seizure for 8.4 weeks
yet every 12 hours we are reminded of his dependence on drugs
and we never ever leave the house without his emergency meds
but rarely do we do something as a family of 5 outside of the house
it's honestly easier for either Lance or I  to miss out and just stay home
than it is to battle through the likely behavior challenges

so there is a lump in my throat
it'll swallow even harder Wednesday morning
when i don't have to wake Davis up for breakfast and bath, to get ready for school
he won't notice so much
i don't think

i'm going to order the book(s) that his teachers said quickly became his favorite

we have initiated several processes today
with AEA
with his family physician
with physical therapy
with swimming lessons

tonight he and i jumped on the trampoline
and i pushed him on the swing
we did flashcards and read books
and everything seems normal
until suddenly it isn't
and it feels like his crazy switch has been thrown to on
chaos sets in
and everyone is looking at everyone for help
to get Davis out of his zone
and settled back down
which he does
eventually

then we feel exhausted and relieved
and Davis comes back in the room i'm in
and unprompted
says
"i so sorry momma..."
and i fight back tears

it's not his fault
i don't know if it's the medication
and/or if it's residual affects of 51 seizures

we are fearfully and wonderfully made
the brain is fascinatingly complex
and the tests haven't revealed anything yet
so we are holding onto a bundle of unknowns

but as Davis recites at least once a day
"LORD (as he points to the sky)
YOU KNOW (as he points to his forehead)
ALL (as he makes a big circle with his arms)
ABOUT ME!" (as he points to himself)
PSALM (as he opens his hands like a Bible)
139
verse
1

and then he asks each of us to recite it (with actions)
which we each do
with a smile on our face :)

Thank you Jesus!
Amen