starting all over~

Hope Floats

Beginnings are scary.

Endings are usually sad,

but it's what's in the middle that counts.

So,
when you find yourself
at the beginning,

just give
 hope
 a chance to float up.

And it will.

from the movie

"hope floats"

 

this is one of my favorite poems

and

as of today
we are back at the beginning

those words

were what came to mind this morning

 

our littlest was diagnosed with epilepsy

when they were just about 1 1/2 years old

 

we tried for a year with no medication

and

opted to treat the seizures 

 with accupucture

 

it worked

 while we were doing this

our little ones seizures were at bay

 

i know you should never

have to put a price on ones life

but

when insurance only covers 12 visits per calender year

those sessions are burned up quickly

soon you are paying out of pocket

and with one income

and

a family to take care of

you have to look at other options

 

all was fine for about six months

after stopping accupucture

 

we were told from the neurologist

"that some children just go through a phase
 and that our little one could simply just have a few
 and we may never see the likes of a seizure again"

 

during those 6 months we remained
 HOPEFUL

each day that passed by

no sign of a seizure

made us think that our little one
 was one of those who simply grew out of this phase

 

then they came back

a little bit more powerful

and a little more frequent

long story short

our little one has been treated
with medication for almost 4 years
as this one grows
their threshhold become lower
if overtired or fighting illness
threshhold becomes weaker

their medication is based on weight
so as time goes by
seems about every 2~3 months
we start seeing break through seizures

if more than three happen in a day or two
then there is an increase

as time goes by
we forget this is apart of ones life
overall life is normal

and it is in those moments
when you are thinking of nothing
enjoying the warmth of a day
playing
that reality seems to sneak back in
and say
hello
remember me
i am back

yesterday
we were loading up the car
to head out an about for an adventure
when
 i hear the scream
the words calling to me
from a small voice

"mama, im having a seizure"

your heart drops
time stands still
and the haunting reminder
slaps you in your face
that this is
this is what lies ahead
this is ones life
for the moment

for everytime we have a break through seizure
we start back at the beginning
like a timer
re~setting itself

our little one has to be seizure free for
 two years
before we can try
weaning them from the medication

as of now
we only make it a few months
and
these little surges of electricity
make their return

its sucks

yesterday there were two within a few hours
they were more powerful than we had seen
and
the after affects took
much longer for our little one to bounce back

i know life could be far worse
illnesses unthinkable could have been
and
trust me
we are thankful that there are no tumors
and nothing major that is causing these

but it is unexplainable
 the feelings you have
watching your precious little one
going through such
and
now that their means of communication
is getting clearer and clearer with age

the words spoken
NUMB
 you to your core

"mama, why me? why do i have seizures?
is it from the popsicle i had? maybe i shouldn't
have played...i don't like them...make them go away."

all my reasons
all my answers
make no sense
i have no real explanation as to why
it just happens

so this morning i sit here
trying to remain

HOPEFUL

for the days to come
that this to shall pass
soon we will look back
and
 think how quickly 2 years have gone by

that all this will be just a figment
of our imagination

HOPE

right???