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Easton's Eye - Part 6

March 2011
A year ago... wow!

In so many ways
we have grown
with the Eye

but
in so many ways
it is still
so very hard.

By this time
all drops
to heal Easton's Eye
were done.
the weekly eye exams
were done.
I think we were
still doing the blue
drop for glaucoma
but our PO
let us go
for a good 6 weeks
before our next visit.

So I was left
with time
and it was time
time for me
to really learn
how to put a contact
in an infant's eye.

I watched
I asked
I researched
I practiced
I improved
but
I wanted
an easy way
and I found
there was
no easy way.

The biggest hurdle
was getting over
the fear.
I literally had to
desensitize myself
from opening
his Eye.
Once I got past
the fear
the shaking
the holding my breath
the task
started to feel
normal?

Then it was about
creating a routine
and staying
consistent
even though
Easton was still
asleep
while doing all this
I knew
he knew
and having the routine
helped.


April 11, 2011
Ahhh Spring

finally some fresh air
that I could
breathe
it had been
a long
cold
winter
that's for sure.

So yes, another eye exam
nothing major
I think this was
around when
the drops
finally stopped.

Of course
I was happy
but still
I was nervous
the glaucoma was gone
but was it gonna
stay gone?
so she rescheduled
us to come back
in another 6 weeks.

I do remember though
it was at this visit
that I finally felt
strong enough
willingly not desperately
I asked
do you have any
suggestions
resources
support groups
anything?!
considering the rarity
of Easton's Eye
she didn't have
many local contacts
but she did
direct me to
some online resources.

And so it began...

April 13
I left my first
online comment
on the blog
Jack's Journey.
I found it
from the website
Children's Eye Foundation
he was the cutest
Little Ambassador.

I can not
even begin to
describe the feeling
of having found
this blog
someone had a story
that was like
mine.

All this time
time spent feeling
alone
when there were
others
others with stories
like ours.

I just couldn't
believe it
of all things
a computer screen
and a keyboard
linked me into
a world
a world I knew
a world I didn't
want to know
but did
and it felt
so incredibly
comforting
validating
to know that
the journey
my family
was on
was not one
we had to take
alone.

The first thing
that came to mind
was my husband
I had to share
this blog
with him.
No one
but him
us, we
truly knew
what it was like
to live like
this
and I wanted
to share
my discovery
with him.

The second thing
that came to mind
was gratitude.
I was so grateful
that this family
this fellow Eye Mom
took the time
to tell
to share
her story
Jack's Journey.

And from there
my world
expanded
her followers
her commenters
they too
were all in this
together.
It was like
being reunited
with long lost
friends
friends who
no matter the time
no matter the distance
were there
and they just
understood.

To this day
I still tear up
from the overwhelming
sense of gratitude
I have in finding
my online
Eye Moms
families
who I will
most likely
never meet
but have such
an incredible
LOVE
for.

Thank you
to everyone
who shares
their stories
their strength
their courage
to walk this
journey
publicly
openly
online.

Thank You.
Thank God!

Easton's Eye - Part 5

And the timeline
continues...
I must say though
looking back
does remind me
of what we have
been through
but it also shows me
how far
we have come.

For example, today

we took the twins
out and about
of course Easton
was patching
in public
two stores
and one sit down
restaurant
to be exact
and not one
comment
question
or obvious
rude stare.
NOT ONE!

December 2010
It was the holiday season

taking infant twins
anywhere
was an adventure
and a spectacle
add a patch
over Easton's Eye
and I might as well
wear a neon flashing
sign that said
"Don't ask."

Either I was
newly sensitive
or people were just
rude and nosy
but we could not
go anywhere
without being
starred at
stopped
and asked
"what's wrong
with his Eye?!"

I knew most
were genuinely
concerned
kind
curious
but what they didn't
realize
is that they
weren't the first
and they
wouldn't be the last
to ask
to ask that day
or even
to ask in that
one store.

And aside from
annoyingly 
repeating myself
a million times
mostly it hurt
simply because
it was a million
little reminders
of how people saw
the patch
before they saw
my sweet boy's
beautiful
baby face.

And that was really
(and still is)
one of my biggest fears
that Easton
would be unfairly
treated
judged
based on his
appearance
and not on
who he truly is.

December 8
Easton's Eye Exam with the
pediatric glaucoma specialist
I will never forget
meeting him
for the first time.

As a mother
seeking information
seeking support
he suggested
I read the chapter
he wrote on
pediatric glaucoma
which was
in some textbook
in some library
that I was sure
to easily find.
Ha. 
Ok.

Also before
conducting his exam
to check the pressure
in Easton's eye
he showed and explained
how he would use
an eye opening device
that "wouldn't hurt"
but upon removal
Easton might have
"pink tears."
Ummm just
punch me now
in the stomach
and let's get this
over with.

Honestly, I
chalk this one up
as a win
we left
without seeing any
pink tears
and learned
the glaucoma
was retreating
on it's own
and Easton's eye
looked to be
healing well
revealing a seemingly
healthy optic nerve.

VERY good news.
Thank you VERY much.
Good bye.
We will follow up
with our
VERY gentle
regular PO.

January 2011
Happy New Year!
Happy Contact Hunting!
HaHa I wish
it was Happy in
Contact Hell.

The roller coaster
went something
like this...
ahhh contact in
oh wait
do you see it
uhhh it's lost
sighhh
oh wait
found it
yayyy
good it's back in
nope
lost again
try to find it
again
ohhh nope
not finding it

re-ordering
re-sizing
wait
did it flip out
did it pop off
did he just rub
arghhhh
gone
it's gone
again
wait
flashlight
found it
try putting it
back in
again

Repeat
Repeat
Repeat again
All in one hour
All in one day
All in one week
Repeat

January 31
I remember this day
I remember
Easton asleep
swaddled in his
bouncer chair

I remember
the contact
already fell out
early that morning
I remember
I found it, but
Daddy was at work.

I remember
thinking I have to
I have to try
I have to learn
I have to do this
I have to today.

I remember
trembling
hands shaking
sitting right next
to him
sleeping
I remember
my face
leaning in
breathing
right over his
I remember
I had seen
my husband
do this
a thousand times.

I remember
I did it
somehow
I remember
I wrote down
this day
I did it
I got Easton's contact
in and on his Eye
for the first time
I remember
this day
like yesterday.


February 9, 2011
Easton was a little
over 4 months old
we had been
waiting for
working on
looking at
longing to
see a sign
something concrete
evidence
that Easton
could see
with his "bad" Eye
contact corrected
vision?!

I wrote
in the baby
notebook
Easton followed
my hand
wearing his contact
today!
Tears
Tears of JOY
Tears of pride.

February 17
Life on the roller coaster
in Contact Hell
has good days
and bad days
(one might note
this still happens
in the present day)

This particular day
made history
because it was both
not necessarily
an uncommon
occurrence
but this was one
of the firsts
and it changed
things.

The bad part was
we had lost
yet another contact
searched
looked
hands knees
flashlights
hours
bummed it was
gone.

The good part was
we didn't need
to be bummed
anymore
when we found
the contact
on Easton's bum!
It fell
into my hand
as I was placing
him in the baby
bathtub of water.

The part that changed
things
was we began to have
a sense of humor
over all of it
I mean really
how could we not
laugh at that
laugh at ourselves
laugh at our silly
baby boy
who was hiding
a contact
that we looked for
all day
on his lil baby butt!

If we had learned
anything
up to this point
it was that
we could do this

we were doing this
and it was
worth it

it was worth
ALL of it!

GOOD days

After the storm
of feelings
surface
perspective
arrives

Anyone want to color with me?!

adapt

I'll color here...

adjust

And here...

grow

I'll color everywhere... while she just eats the crayon.

gain

I guess someone needed to get it all out?!... Easton's work of Art!

endurance
strength
balance

I think
my husband
summed it up
nicely
when he said
the contact may have
won the battle
but we are
and will
win the war!

Our new "patch place" for the month!

It is
all about
Seeing the
Distance
and that
we shall
continue
to do.

There have been
so many
GOOD days
days that just
slip by...

They sat there and read out loud together.

She got new birthstone earrings.

He loves this thing and drags it all around the house.

It's a jungle gym not a chair.

Obsessed with all of Daddy's shoes.

The boy can rock a patch!

Her leave me alone, I'm busy look.

Best Friends.

Another set of twins born on the same day, NICU friends.

They do everything together... in this chair.

Even if
our mornings
don't start out like
everyone's average
morning
I can not
forget
to honor
these days
the GOOD days.

March

March
March On
Keep Marching
that is what
I am telling
myself
today.

March has certainly
come in like a LION
and I can only hope
that it will go out
like a lovely little lamb?!

Sick
I am sick
literally ill again
hopefully not
the kids too
but getting better.
Mostly though
I am just sick
sick to death
of the...
I really want to
swear here
CONTACT.

We have officially
hit a wall
in the past
yes we would have
good days and
bad days
but right now
BAD
they are all
BAD.

Every
single
morning
the contact
is a BAD
battle.

And I don't even know
who is in the fight
me and Easton
me and the contact
the contact and Easton
maybe it's different
each day
maybe it's all of us
everyday.

But it sucks
it sucks
the life
the love
the laughter
everything
right out of
our morning
every morning.

And today
the contact won
for the first time
in a long time
it didn't get in
when
when is enough
enough
time
tears
tries
the threshold
where is it
would it have
gone in
on the next try
or would the next try
scar him
even more
more than he already
is scarred.

Heartbreaking
Frustrating
Hate
Anger
Sadness
Guilt
and that is just
how I feel
how does my baby
my baby boy
feel?!

Bless him
Bless his little heart
his brave strong soul
oh how I pray
this makes him
and doesn't
break him.

March
March On
Keep Marching

Easton's Eye - Part 4

Oh this next part
picking up the pieces
and moving
forward...
November
Remember

November 8, 2010
I think it's important
this day
the day my family
finally, 6 weeks later
was complete
home
under one roof.
Welcome home
Azalea Jayne!

Other good news
well at the time
we thought it was
good news...
Easton's Eye
had healed enough
that we could start
fitting him for a
contact lens.

Oh the feeling
the excitement
the anticipation
the fear
of moving
forward
into the unknown
on our path
of trying to give
Easton
the best
the possibility
of vision.

Little did I know
this lens
this tiny disk
that seemed like
the answer
was just
the beginning
to the next phase...

Que dramatic music
blinking red lights
loud sirens and
warning signs
unknowingly
we were about
to enter
Contact Hell.

November 9
Again, another
interesting day
my original due date.
Considering
ALL we had
been through
now is when
they
would have been
full term.
Ha, perspective.

November 15
This day is one
I have to laugh at
Azalea's first trip
to the Monday
Eye exams.

Looking back
I really don't
remember much
what I am recalling
is mostly from
little notes
I wrote in
the baby notebook
a keepsake
for sure!

I do remember
being so incredibly
exhausted
shamefully I will admit
driving to the
Monday Eye exams
half asleep
transporting precious cargo
buckled into a car
being driven
by a zombie mom.

Well on this day
the little girl
who slept through
the entire office visit
and who
hated to eat
got hungry
in the car.

Meanwhile Easton
who had been up
for the exam
was now sleeping
not wanting to
move him wake him
we decided to try
to feed her
in the car
kinda hard to do
when the milk
is on ice packs.

Daddy's brilliant idea
warm up
her less than 2 oz. bottle
with the hot air
blowing from
the car heater!!!
It worked.
She ate.
We laughed.
Life goes on.


November 16
Phone calls and faxes
contact ordered
contact in
Easton's first
contact fitting.

Oh and wouldn't you know
it just happened to be
my birthday
my 30th birthday
what a way to
celebrate!

Needless to say
this is when
I started to learn
a new language
contact language
fluting
skirting
sliding
nasal
temporal
what does this all mean
the contact
didn't fit
because if it did
those words
need not apply.

But we left
with it anyway
why
because it was
our turn
Daddy's turn actually
to practice
getting it
in
on
his Eye.

Thankfully
there are 2 of us
parents
they must come
in a pair
for a reason?!

My husband
wears contacts
he stepped up
he was not afraid
and for the next
couple months
he did it
he went for it
he managed
the contact
while sleeping
while feeding
in
on
out
he did it!

I watched
supported
encouraged
absorbed
learned.
I was still
afraid
terrified
of the contact
of the Eye.

November 22
The weekend
came and went
it was Monday...
again.

Nothing significant
has changed
with his Eye
it was healing
and only time
would tell
the rest.

However, now
we had a contact
an ill fitting contact
the Dr. got it on
agreed, it didn't fit
a different one
was already
on the way
BUT
it was clear
anything
was better
than nothing.

Easton was almost
2 months old now
the urgency
to send vision
any kind of vision
with that Eye
to his brain
was priority
so ill fitting
or not
he needs to try
to wear it
he needs to start
patching.

I remember
we left that day
with a contact
that was fluting
raised up off
sticking out of
his Eye
and
a patch
over the only eye
we assumed
he could see out of.

Oh how my heart
ached
physically hurt
to see
to experience
such a moment
my baby boy
forced
to endure
forced
to be challenged
from here
forward
this would be
his life.

As a parent
this was new
tough
very tough
where is the line
when do I step in
how do I
how will he
get through this.

I remember
we left the office
and drove
straight to the nearest
drug store
buying 
patches
saline solution
lens cleaner
and
more patches

The knot
in my stomach
was getting
bigger and bigger
this was real
so REAL
and 
it wasn't getting
any easier.