Showing posts with label Life with Easton's Eye. Show all posts
Showing posts with label Life with Easton's Eye. Show all posts

Tuesday, August 13, 2013

Dear Eyepatch

ok so I am
going to try to
write this
without sounding
bitter or angry
because I'm not
in 2 1/2 years
I have grown
gained perspective
but there are times
when patching
STILL sucks

a few other imoms
have recently written
similar posts
Anderson's Bobble aka. Mom
Austin's Mom
Tommy's Mom
I have since been
inspired
interested
in my own experience
it kinda feels like
an imom homework assignment
YES, I challenge
the rest of you imoms
or anyone really
living with a daily
necessary nemesis
this is not easy
it's been rattling around
in my head
for a while now
I guess I'm
just gonna go for it
just gonna be honest

Dear Eyepatch,
I never really imagined
you in my life
really I had no clue
you existed until
I was forced to
stick you on my
beautiful baby boy's
sweet innocent face

in the beginning
I will admit
I was in complete denial
of the relationship
you and I would develop
I was determined
to ignore you
and to not let you
define my son
or my family

in fact this sounds
so ridiculous now
but I refused
to take your picture
thinking that some how
I could avoid you
and my camera
and all the moments
you would steal
but I quickly
and coldly realized
you were going to win
that battle

you are on my son's face
everyday
for most of the day
for nearly the next
decade
his entire childhood
I would be the fool
to not accept that
to not capture him
his life
let's be clear
I'm not photographing you
I am remembering HIM

so here it is
the first photo
had to dig for this one
I remember it clearly
Easton was barely
3 months old
Christmas time
Daddy was watching football
it was time to patch
and he wrote on you
it was the first time
we tried having fun
with you
all I remember is
it was painful
I really didn't find you
very fun at all
back then


but with or without you
my baby boy
was growing
cooing and moving
smiling and seeing
he was
he is
so brave
you covered
you hid
his strength
his strong eye
and he just kept
right on going
growing
how could I not


you collected many things
along the way
eyelashes for one




tears for another
many many tears
Easton's and mine
to say that you
haven't created a wake of
sadness anger frustration fear
in your path
would be a lie
but now
I am happy to say
we still cry
but much less
over you
we have better
things to do


Easton finds many things
to do with you
other than keep you
on his face
but overall
I think he tolerates you
quite well
he knows you
are his
he knows you
belong on his eye
he knows you
are not an option
sometimes he even
asks for you
when you don't need
to be around
I do wonder
other than happiness
how he will feel
when you are
permanently
not around anymore
or for that matter
how I will feel

for a long time
I really just
wanted you
to blend in
I liked that you
were boring
and beige
you had already
created enough
of a distraction
I felt we noticed
you less
and saw him more
when you matched
his skin tone


however the bottom line is
and overtime
and with support
I began to embrace you
and dare I say it
have a little fun
with you
this is Easton's first
colorful patch
yes, I willingly
photographed this one


acceptance
is a funny thing
is no easy thing
as much as
anyone would like to say
it is like a switch
on or off
yes or no
real true acceptance
of a challenge
or difficulty in life
takes time
it's a perspective gained
a path walked down
an experience
a stage grown into
and with a year
of boring, medical patches
we were ready
to change you
to gain some control
over you


I was ready to
accept that if you
had to stick around
we might as well
have some fun



and again
let's just be clear
you are NOT fun
really and truly
I am sorry
but I hated you
and in some ways
still do... remember that
acceptance thing
it takes time
but you see
when we have fun with you
people notice
well they noticed
when we didn't have fun either
but I digress

people see you
all bright and colorful
covering my child's eye
and they can't help it
they open their mouth
and while sometimes
they try to mean well
they are curious
they are compassionate
but what they don't realize
they are countless
one of the many
many many many
comments about you
and I just instantly 
get annoyed
get angry
mostly because
it's not about you
it's about HIM
I still get worked up
because I just don't understand
why people can't simply
see past you
past the freackin patch
and see him
say something about
him


that is
and will continue
to be my biggest fear
until you go away
that people
adults kids
Easton's peers
will only see you
before they take time
to get to know him


I know I may sound
hipocrytical
I have a blog
about a son who patches
I write about it
I call attention to it
hello Dear Eyepatch
but that is just it
you are merely a part of us
you are not all of us
and I want all families
not just ifamilies
to know we are more
than just a family
who patches
patching does not define us
we live
we love
we laugh
just like everyone else
and there are people
families just like us
which helps us
feel less alone
especially when
we are doing
everything but
laughing and having fun
with you 

The infamous, discontinued giraffe pattern patch... obtained from trading patches like baseball cards, who knew?!

its weird
sometimes I feel
this was our fate
and honestly
I would not want it
if given the opportunity
to have it
any other way
you see
as much as you have
collected from us
I have been collecting
from you
every time Easton
puts you on
I collect more and more
strength
I collect more and more
gratitude
I collect more and more
love

It might be time for a new opening blog pic?!

I may hate you
but I do appreciate you
I see your value
I see your work
you are worth
my imom effort

yet I feel
I need to make
myself crystal clear
one more time
Easton (and Azalea)
are true and precious gifts
they came in the form
of tiny miracles
and have blessed
and continue to bless
our lives everyday
they are perfect
they were perfect
from the moment
we knew they were ours
vision or no vision
with or without you

you offer Easton
a chance at better
the best possible
vision
and for that
I am grateful

so I am going
to continue
having fun
choosing colors
and patterns
and themes
mixing and matching
picking and patching

Are we seriously already ordering some patterns in the "biggest" size?!
struggling and sticking
saving and collecting
from you
I will admit
I have many of you
some special versions
of you are tucked away
in baby books and keepsakes
other forms of you
decorate our home literally
and inspire me daily
every version of you
peeled from his face
handed to me
thrown at me
or found
equals courage
equals hard work
equals time spent
patching
one step closer to
seeing the distance

Shout out to #camopatchkids Instagram on Sundays!

one day
you will
go away
and I will do
a happy dance
a grateful dance
a halleluiah dance 
but I will not
for one second
forget this face
his face
that you
are a part of
I know that
I understand that
I accept that
I see that... now

Sunday, June 30, 2013

mEYElestones

We are walking
as a family
with other friends
leaving a grad party
talking and shuffling
kids moving about
adults saying good-bye
I take two steps
from the driveway
onto the sidewalk
that leads to our car
a distance away
a mEYElestone
I will never forget...

a tiny, but LOUD voice
rings in my ears
instantly
a tiny, but FIRM hand
grabs me from behind



wait I forgot my tact-jones

Easton immediately
leads me a few steps
backwards
towards
an exact spot
the point where
the gray dusty
concrete driveway is
glimmering
shinning
in the late evening sun

in absolute disbelief
I instinctively
lean down to find
a tiny round
rolled over
silicone disk
is it
could it
possibly be
HIS CONTACT


I question
this moment
for a millisecond
and then begin
to float
everything
is blurry
after this point
I remember
showing Easton
asking Easton
praising Easton
I was in shock
and overcome
with intense feelings of


Pride

sure I was relieved
sure I thought of the
what if's
he never told us
we notice later
search the car
search the house
never find it
feel discouraged
and despite
having to open
a new lens
continue looking
into the next day
just because
this
this is beyond
that relief


2 years and 9 months
I have dreamed of
this moment
since the first
lost contact lens
when Easton was
barely 3 months young
wishing
wondering
waiting
for the day
when he not only 
literally says...
Mom, my contact just fell out
but also
Here it is!!!


WOW
unbelievable
how
when
did we get
here


this journey
never ceases
to amaze me
any imom knows
as exhilarating as
mEYElestones
can be
they don't come
for free
discipline
tears
tantrums
routines
habits are formed

this moment
this feeling
is earned... this
is what will make
tomorrow's path
brighter


and speaking of
tomorrow's path
Easton's Eye journey
continues to evolve
along with his
new found awareness
of obviously his contact
he is evermore aware
of all things
Eye related
drops
contact time
patching
glasses

he willingly
eventually lays
accepting
understanding
that drops
and contact time
are not optional
he will sometimes be
5 steps ahead of me
and lay down
hold still, knowing
whats to come
there are those days
if he wakes grumpy
or wants to flex
his independent
oppositional toddler
protest
but again behind all
the fuss
he knows
it's gonna still happen


the same goes
for patching
but he now knows
how to AND
that he can
simply peel off
his patch
it started
a few months ago
during nap time
he would take it off
and we would
put one back on
when he woke up
not really
an issue


however
as of this past week
he has fully realized
he is unreachable
in the car
along with
his shoes
his socks
his sippy
his sister's
same stuff
his glasses
and now
his patch
all removed
all whipped
into the way back
of our family SUV
and fits of
giggles follow


I try
I try really hard
not to make an issue
out of this new
passive-aggressive
toddler tantrum
which is less Eye related
and more emotional
development
but it is hard


again any
imom knows
on a busy day
on a bad day
that is a lot of time
that is a lot of patches
that is a lot of patience
that is a lot of persistence


on a good day
he is a busy
ever more aware
toddler
who understands
the importance
the structure of
life with the Eye
on a good day
I can actually
reason with him
I can actually
distract him
I can actually
reassure him
to keep it on
because he will
eventually
be able to
take it off


mEYElestones
they help me
See the Distance

Wednesday, April 24, 2013

Momma, I can't see.

Life currently
feels literally like
a current
driven
direct
fluid
endless
and yet somewhere
mixed among
the monotonous moments
are monumental milestones
that interrupt the flow
and all of the sudden
the predictable path
feels... different.

Our mornings are
familiar and fast
wake
feed the dog
make coffee
wash face
pour coffee
get dressed
drink coffee
make up and hair
organize stuff
wake the kids
pick out outfits
sing You Are My Sunshine
while rocking and snuggling
whoever is up or both
diapers and drops
read a book in cribs
while I wash my hands
get his contact stuff ready
still swaddle his arms
kiss his forhead
lately he requests
"sound effects"
to me opening
his Eye
we listen for the
crunch
of the contact
close his Eye
he can "blink it" on
or I might have to
wiggle it on
again more sounds
maybe even rub out
an air bubble
on a good day
we are clapping
in less than 30 seconds
on a bad day
he still cries
squeezes his Eye shut
and we arn't clapping
until the 30th attempt
either way
we get through it
and the current
continues

out of the bedroom
down the hall
put contact stuff away
get milky stuff out
pick out a patch
apply "the cream"
around his Eye
sometimes on her too
let it dry
get out sippy cups of milk
eat a banana
dry cereal
watch Disney Jr.
put on the patch
while distracted
press and hold
count to 10
get his glasses
brush her hair
barrette her bangs
pour more coffee to go
shoes keys bags
kisses and hugs
out the door

times may vary
slightly
but I am in the car
and driving away
by 7:10
15 min ride to work
hall duty begins
students arrive by 7:30
why all the details
ohhh at about
7:05 on Tuesday morn
our monotonous morning
became a milestone moment
in an instant
he grabs her sippy
I say here Bubby
this one is yours
he wants hers
she now wants hers
she takes it
he wrestles her for it
I intervene
she wins
he's mad at her feet
annoying her
I walk away to get
his patch
he starts screaming
tears equal no patch
for the moment
I go in to comfort
ask what happened
she kicked me
where, in the face
ask her what happened
I kicked him, in the face
he is more mad
than actually hurt
I ask her to say sorry
she does
he is still screaming
get him to calm down
say you are sorry again
so that he hears you
all is well
sipping said sippies
go get the patch
put it on
go get the glasses
go to put them on...

in the tiniest
truest
most honest
little voice
clear as day
light as a feather
I hear

Momma, I can't see.

his words hit me
slowly
they feel like
a sheet of glass
shattering
scattering
to the floor

instantly
yet in slow motion
my eyes peer through
his glasses
to his Eye
the only Eye visible
I knew
without knowing
his contact was gone
take his glasses off
bring him to the
morning light
patched
tell him to look
confirmation
of what I already knew
immediately
remove his patch
and instinctively stick it
on the back of
my hand

hug him
HUG him
tell him it's ok
I'm sorry
you are right
you can not see
if your contact
falls out
and your patch
is on
I'm sorry baby
I am so
proud
I am sooo proud of
you
you told Momma
and now Momma
can help you
see again
it's ok Easton
Mommy loves you
sooo much
good boy
here
here are your glasses
you wanna sit back
on the couch
with your sippy

go get a flashlight
shine it on the floor
right where said
kick in the face
occurred
bling never looked
sooo freakin good
found it
rolled over itself
three dog hairs
hangin off it
go get contact case
drop it in the stuff
grab my work stuff
and go
go
gotta go

get in the car
I'm late
I'm changed
I breath in
I exhale
I feel... different

monotonous
moment
monumental
milestone

the patch
the patch
that he was wearing
the patch
that he wasn't wearing
the patch
that I was still wearing
the patch
that I was now wearing
the patch
that I wore all day


I didn't
I couldn't
take it off
he can't
take it off
his words
his voice
continued
to ring
through me
to me
to my
core
Momma, I can't see.

it hurt
those words
cut me
deep
they openned
wounds
that I thought
were healed
he's right
he can't see
but he is also
so dead wrong
because
because
he can't see
means
HE CAN SEE
and so
I wore it
I patched
because
he patches

it was sticky
it was on my skin
it moved
when I moved
it peeled
and I pressed it
back on
my heart ached
and I kept going
people asked
adults
students
stories were shared
answers were given
light bulbs went on
paint was poured
emails were sent
hands were washed
I patched

I have worn the patch
before
on my clothes
on my face
but not like this
on clothes it doesn't
really count
and honestly
I would never last
with it on my face
8 hours daily
for 8 years
unbelieveable
with it over MY eye
I can't even last
8 minutes
seriously
I panic
I get a head ache
I take it off
I give in
but this time
was different
I wore it
yes, I know
on my hand
but in my mind
in my heart
I patched
and it packed
a punch
patching SUCKS
but patching
works

Patching truly
simply
is Easton's life
it is all he knows
and he wears it
like a champ
like a warrior
accepting of
the battle
willing to fight
the good fight
and on any other day
patching really
goes unnoticed
well, not really
but it is just part of
the routine
the current
but every
now and then
he grows a little more
aware
and I become a little more
aware
of just how
proud
I really am
to imom
this ikid
Eye would NOT
have it
any other way
Eye know
Eye can
flow with this
current.

Saturday, April 13, 2013

follow up

And so I return
I've attempted to
write this post
several times
with multiple themes
but nothing really
compelled me
and now here I sit
sick and stuffed up
on the couch
kids just in bed
hubby out the door
to play poker
the dog at my feet
and I'm left with
time
time to think
time to reflect
time to follow up

 

where to begin
hummm
how about with
confesssions
I confess
these pics are over
a week old
I confess
I haven't picked up
my camera since
I confess
I have been busy
I have been sick
I have been lazy
I have been uninspired
I confess
sometimes I need
a break
over Spring break
I did nothing
I confess
I had time to do
something
and I chose to do
nothing
and in doing so
I feel I did do
something
I gave myself
a break
and I confess
it felt good



and honestly
going back to work
was a little rough
on all of us
we adjusted to
doing nothing
quite well
and in the beginning
of this past week
much of our routine
felt... forced
for example
I finally made an
Eye apt. for
of all people, myself
for a while now
I have noticed
a discolored spot
on my eye
and since it
didn't hurt
didn't change
didn't effect my vision
I've ignored it
 

this seems so strange
to say, as an imom
I have never had
a formal eye exam
of course my general Dr.
has performed the basics
to determine overall
eye health and vision
but I actually now have
my own Opthamologist
and pun intended
it was an Eye opening
experience, ha



first of all, I know
way too much about
eyes and exams
secondly, it still stings
to share Easton's story
especially to people
who truly get it
thirdly, I was brave
only because
Easton has showed me
how to be

 

a real eye exam
is intense
and I already knew that
but now I really know it
of all body parts, Eyes
Eyes are sensitive
Eyes are awkward
Eyes are everything
and now Eye
have that much more
understanding
compassion
empathy
for Easton
and each and every single
ikid
who are warriors
battling every day
for a chance
at better vision

 

I will never again take
one single glance or
one stunning scene
for granted
as a fellow imom
titled her blog
Vision is a Gift
and Amen to that

 

yes, my eyes are healthy
it was determined
I have an age spot
of all places, on my eye
most likely brought on
by the hormonal changes
from my pregnancy
sounds like good news to me
I'll wear it proudly  ;)
follow up in a year

 

and speaking of
follow up
let's follow up
with Easton
his 6 weeks post EUA
follow up was also
this past week
are you noticing a
theme here...
 

the Eye apt. itself
was actually pretty
dare I say, easy
Easton's vision
tested well
he was fairly cooperative
we were satisfied
we just got all new
scripts 6 weeks ago
so continue patching
8 hours a day
based on the EUA
new PO agrees
glaucoma is present
continue to manage it
with current drop
in the AM and PM
 

here's where the theme
hits home, the follow up
follow up in... wait for it
6 MONTHS
what, seriously?!
the longest we have
ever ever gone
between Eye apts. 
was 3 months
like way back in the day
before glaucoma
really came and camped out
so of course
I asked a few questions
and he gave me
fair answers
with confidence
so slowly
very slowly
I let myself
believe him
trust him

his perspective
his practice
is different
than what I know
than what I am used to
but that doesn't mean
its wrong
so 6 months
will come
and 6 months
will go
and then we will
follow up
 

in the meantime
we will continue
we will carry on
my lil warrior and I
my family of giraffes
busy seeing the distance
we have finally
caught a break
found a plateau
a chance to grow
 

how's that
for a post about
following up 

Tuesday, March 19, 2013

when

 

I used to wonder
when
when would I ever
graduate high school
finish my college degree
get a job
get married
buy a house
get pregnant
you know
grow up



and when I say
wonder when
I mean I literally
remember
wondering
daydreaming
in grade school
sitting at my desk
thinking to myself
only 2 more years
then only 3 more years
then just 4 more years
and viola
I would be walking
across the stage
into adulthood
aka. no more homework
ha, how innocent was I

but that mentality
has always been
a part of me
I set a goal
and I can see it
way out there
in the distance

now as a mom
more specifically
as an imom
I still wonder
when
one of my biggest
thoughts
fears... was when
when is he
going to realize
he can't see
well, can't see well
out of his one Eye



as an infant
this was obvious
he was oblivious
he would be patching
the contact would
of course, fall out
several times a day
sometimes
for a long time before
I would even notice
and I would wonder
why doesn't he care
when
when will he care

then he got older
the contact fell out
less often
rare was the day
he would be caught
patching
without a contact
but still
on the occation
nothing, no sign
no true ability
for him to communicate
that he could not see

well I have a
when... two and a half
no his contact did not
fall out, knock on wood
but I decided to give
them an early bath
just before time to
remove the patch
and consequently the contact
and at that moment
I realized
I could take the contact out
before removing the patch
you know, just to see
and immediately
he says
I CAN'T SEE!
in a slight panic
seconds people
seemed like a lifetime
and never again
will I do that
I now know
when
 

I used the moment
to explain the contact
for the umteenth time
hoping this time
might be the time
it all starts to
make some sense
and who knows
he might loose the contact
in the future
while patching
and never even say a word
but at least now I know
he knows
and in a weird way
its reassuring


where am I going 
with all this
you might remember
the big "lottery" decision
contact or graduate to
just glasses
and I/we
decided to stick it out
with the contact
I now know why
this was a good idea

with only glasses
and patching 8 hours
every single day
if the glasses come off
because he took them off
because they fell off
because it's naptime
because he is changing his shirt
because we are in the car
because the lenses need cleaning
the list goes on
then hello, he can't see!!!
the patch essentially
would need to come off too!?!

I have never been
more grateful for
that DAMN contact
in my two and a half years
of his life... when!
 

so yeah
as you can see
the new lens is in
the new bi-focals are on
and we continue
to patch

he is a champ
he is a toddler
he is two and a half
he was so excited
to get his new glasses
he loves that they have
frogs on the frames
 

he keeps them on
he uses the bi-focal
he hasn't even flinched
this kid
this ikid
amazes me
he wears a contact
he wears a patch
and now
he wears glasses
all day
every day
and don't forget
eye drops
twice a day

 


he has his moments
he resists
and he should
and I am sure
he too will wonder
when
when will this journey
ever end
funny thing is
it will... end
someday will become
when
and then something else
will take it's place
 

there is a fine line
between
wondering when
and
wishing life in between away
 

when will they sleep through the night
when will they eat solids
when will they sit up, crawl, stand, walk
when will they talk
when will they feed themselves
when will they be potty trained
when will they dress themselves
when will they...
grow up



as much as I may
set goals
and still wonder
when
I also know
not to forget about
NOW
when might seem great
but now
right now
is real
is raw
is rewarding




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