a bigger plan

It keeps happening
I have posts
in mind
and then
life
happens...

I uploaded
these pics
this morning

I planned to
sit and write
while the kids
napped.

Here I am.

But somewhere
in the middle
of then
and now...

there was a
death
in my family.

And now
I want to write
but
everything
is different.

Everything
is raw
again.

Wounds
I was going to
tell you
I stitched
my wounds
last night
ironically
in my husband's
Easton baseball glove.

And how
symbolic
it seemed to me
that I am
responsible
for my own
healing.

All of this is
so true
but right now
I don't feel
stitched
I don't feel
healed
I feel like
my wound
is back open
and much
deeper.

There was
so much more
that I was going
to relate
to our story
to Easton's story
and it just
doesn't matter
anymore.

It matters
but it's
different.
I have my
babies
I have them
today
and that really
is all that
matters.

Azalea
the picture
of the
Azalea...

I was going to
write about
so much more
but now
all I see is
even if parts
of the picture
aren't in focus
it doesn't matter

what matters
is what's right
in front of me
I know
the rest is
there
and it will
become
more clear
when the time
is right.

I have faith
that there is
a bigger plan
a better plan
it is not
in focus
right now
but when
the time is
right
it will become
clear
and we all
will be
a part
of it.

Ah ba desh ka...  May your spirit soar to the peace you were looking for.  Love you forever.

this sucks

There is no
easy way
to start this post
actually
I had a different
post in mind
but I waited
rather I lived
this weekend
and now
here I am
Monday
the afternoon
after
this morning's
Eye Dr. apt.

You know
I had a feeling
a teeny tiny
flutter
of worry
but I pushed it
I sent it away
ignored it
and focused on
the positives
so many positives
so many signs
that things were going
good
no tearing
no light sensitivity
no corneal haze
no corneal growth
and of course
the drops
lots and lots of drops.

The goal
was to hear
that his Eye
pressure
was good
8 weeks ago
it was good
and today maybe
we could lessen
his maximum
eye drop
treatment.

The moment
we sat in
the chair
I knew
I knew
she knew
she noticed
the shape of
his Eye
not the diameter
but the length
the protruding
abnormal shape
of his Eye
changed
grew
and my flutter
of worry
quickly turned
into a tidal wave
that overwhelmed me
and made my body
numb.

Surprisingly
his pressure
the number
was normal 18
and he passed
all the other
signs and symptoms
of glaucoma
but the one
the one
most important sign
his optic nerve
had changed
she was starting
to see "cupping"
the term you
don't want
to hear
or rather
see.

Cupping numbers
more numbers
what do they mean
Easton was a .1
and now
he is a .2
what is bad
any increase is bad
but a .6
is the beginning
of irreversible
nerve damage
peripheral
vision loss.
We are still ahead
of the damage
but we need to
act now
surgery now.

The maximum
eye drop treatment
is no longer
working
yet we will still
continue with drops
and do more
we have another
Eye Dr. apt.
with the Pediatric
glaucoma specialist
Wednesday
it will pretty much
be a Q and A
before we end up
scheduling surgery
ASAP.

This potentially
could be the first
of multiple
types of surgeries
until we find
the one release
the pressure maintenance
that works
this could also
potentially  be
the surgery
that works
obviously starting
with the least
extreme
the least invasive
procedure.

Considering I ride
a non-stop
rollercoaster
the ride is just
going faster now.
The Dr. knew
probably could see
the disappointment
in my eyes
she tried to
reassure me
tell me
we are still ahead
this was likely
always lingering
always an option
his Eye is
so unstable
so abnormal
the drops were only
going to work
for so long
now we can say
we tried them
...bless her
for trying.

I'm bummed
I'm disappointed
I'm sad
I'm angry
I'm worried
I'm overwhelmed
I'm afraid
I'm helpless
I'm speechless
yet I want to
SCREAM

I know this is
expected
I know this is
part of the journey
I know this is
just the beginning
I know this is
potentially fixable
I know this is
a life long battle
and I know
this sucks
this is glaucoma
this is scary
this is life
with Easton's Eye.

Inspiration

Inspiration
where does it
come from

the other day
thoughts
were just
swirling
swirling around
and around
in my head
until finally
I just grabbed
anything I could
and scribbled
this...

It's ending
anyone who follows
the academic
calendar
knows
It's ending
I too know it
I too feel it
the school year
is over
time to reflect
time to move on
time to look forward

And that
was it
the inspiration
left
the thoughts
gone
but the feelings
well... they
have been
lingering
not swirling
just hangin
right there
in the middle
of my heart.

It's the beginning
of the end
somehow
someway
what felt like
an eternity
turned into
a fraction of
a second
and now
I not only
see the light
at the end of
the tunnel
I feel it
on my face
and in my heart
the light
is there.

May, I know
it's only May
but it's official
it feels official
we had our last
Music class.

I remember
our first
Music class!

This face
that still
sometimes
looks like
a baby face
was once
a baby face.

Our kids
all the children
ignorant of
the occasion
fully present in
the moment
scattered about
on their way
to find their way.

Azalea will have
her last
Occupational Therapy
session
this week.

We will have
our last
Gymnastics class
this week.

What started as
Early Intervention
services
and a class
to help her
continue to
thrive
is now just
another milestone
another example
of how incredibly
amazing
this miracle
our miracle
Baby B
my Azalea is
resilient
strong
beautiful
and anything but
a vanishing twin.

So we will
say good bye
once again
to yet another
time
of our lives.

And I can't help
but feel
that this is
special
sacred

May
this is
May.


They still
wake
with
songs

and smiles

sweet
sleepy
eyes

Ok seriously
I know I am
his mother
but that face
I want to
freeze it
and eat it
for dinner
every night
for the rest of
my life
I'll even have
the patch
for dessert
seriously.

Now this face
like I have said
before
She thinks
this is
her smile...
I am laughing
right now
as I type.

He thinks
He is hiding.

Guess who
just found
them...

Guess who
tried to hide too
and guess who
wasn't welcome...

Oh May

looking forward
to May...

It's ending
anyone who follows
the academic
calendar
knows
It's ending
I too know it
I too feel it
the school year
is over
time to reflect
time to move on
time to look forward

Inspiration!

Rollercoaster

Rollercoasters
I suppose anyone
could relate
their life
to a rollercoaster
I mean really
we all have
ups and downs
unexpected
twists and turns
thrills and shrills

And really
for the most part
rollercoasters
are FUN
a little bit of
danger mixed with
a big, giant seatbelt
add a few other
friends along 
for the ride
and hey
throw your arms
in the air
and let loose!

I remember
as a kid
wanting to be
old enough
tall enough
to ride them
waiting for
my time
my turn
and loving
every part of it
the hot day
the long line
the many sounds
the sticky seat
the anticipation
the ride itself
and the RELIEF
of living through it
all of it
it felt like an
accomplishment.

But then
I got older
and rode them
less often
found them to be
more nauseating
than rewarding
and now
here I am
stuck on one
a rollercoaster
that I know
I won't get off
for quite
sometime.

The rollercoaster

of Easton's Eye

more specifically

of managing 

Easton's contact.

 

I can't even tell you

how many different

ways I was going 

to write this post

a post that has been

brewing...

if I ran to my blog

everytime

there's contact drama

with either bad

or even good reports

I'd be one 

busy blogger.

I want to say

I've changed

I want to say

I've had a moment

of clarity
of acceptance
of peace
on my rollercoaster
but then
the ride changes
and the moment
passes
and old emotions
resurface.

Here's just one
week with
the contact...
Easton wakes
I swaddle and sing
he now sings along
we get the contact
in his Eye
together
yes, somehow
it's finally
working
not necessarily
easy
but tolerable
for both parties
involved
he and I.

Life would be
grand
if the story ended
here
Ha, if only!
so we move on
to breakfast
and patch time
eventually
it's play time
and then I'm
officially on duty
the never ending job
of keeping track
of his contact
where is he
where is the contact

So yeah... this week
well all was great
great day
nice enough
for no socks
I say this because
my big toe stepped
on something crunchy
went to pick up
the crumb
so I thought 
it was his contact!
RELIEF
it's still intact
huh... just one more
crazy story
to add to the already
mile long list.

Another day
again great day
kids laughing
kids playing
toys flying
imagine a big
but fun tornado
and I look down
to see a shinny
lil something
on the tip of a toy
look closer

 

yup, it's the contact
again
RELIEF
it's still intact
huh... just one more
crazy story
to add to the already
mile long list.

Here is when I think
I might do a post
on for all the times
we lose a contact
there really are
that many more times
when we lose
BUT find the contact.
Clarity
Graditude
Peace

Another day
again great day
kids playing
kids napping
kids back up
Easton no contact?!
check crib
this is normal
don't find it
shake blanket
check clothes
under crib
around crib
No contact
start questioning
when I saw it last
start looking
everywhere
No contact
Daddy home
Daddy looks
Daddy usually finds
but still
No contact

Bum
Big Fat Bum
No clarity
No graditude
No peace
Hello old emotions
anger
frustration
sadness
more money gone
everytime
why?!
Am I not used to
this rollercoaster
we have a backup
we will get more
backups
we have been here
before
we will be here
again...

One day later
Easton wearing
brand new contact
Daddy can't resist
Daddy goes back
looks again
Daddy finds it
right under his crib
in the same place
we both already
looked
a thousand times over
WTF
pardon my language
but really... WTF.

Of course
it's easy to say
if only
if only our life
didn't have an Eye
or a contact
or a patch
or eye drops
or Dr. apt.'s
which all added
together
create one hell of a
rollercoaster ride
that we would not
have to be on.

But we do
and with that
we have one
really amazing
little boy
who is worth
every single
up and down
twist and turn
thrill and shrill
and I know
for sure
that at the end
of this
rollercoaster
I just may be
nauseous
but it will be
the most rewarding
accomplishment!

See the Distance

More Moments

What creates
a moment?

Of course dogs stop to smell the flowers!

What defines
a moment?
What makes it
magical

My street is lined and canopied with these blossoming trees.

memorable

And when the wind blows it looks and feels like Spring snow.

or even
miserable?

Life is made
of moments

Our Tree in early Spring, a view we had yet to see.

moments
that seem to
pass by
too quickly
and sometimes
ohhh so slowly.

But how
and why
do you remember
only some
a select few
of these
moments?!

Ring around the Rosie...

Obviously
a camera
can capture
a moment

Look out she is going in for... the patch.

stuck forever
that one moment

in time
in life
but some moments
are remembered
through experience
through touch
through taste
through smell
through sound
through sight
and a camera
well it either
one, is not ready
or there
to capture it
or two, just simply
wouldn't do
the moment
any justice.

Some moments
are purposely
created
and purposely
remembered

but others
other moments
take no effort
they just happen
and ready or not
the moment
comes
and then

goes
sometimes seared
right into
every fiber
every inch
of your memory.

There are many
moments
in a lifetime
my lifetime
some I am
looking forward to

Patiently waiting for the Azalea bush to blossom... although it truly already has!

some I charish

and some
I could say
I would love
to forget
but really
all the moments
make me
me

they form
my perspective
one that sees
understands
that the only real
moment
the most important
moment
is the one
I am living
right
NOW.

Art is Love

So my Mom

keeps everything

it's funny cuz

if I ask 

if she

remembers

a moment

it's usually not

but if I ask

if she 

has a tangible 

piece of 

a moment

it's likely so.

Soooo

when I asked

if she 

had any

used crayons

of course

she did

she had mine

my childhood

crayons.

A fairly large

plastic bag 

of really old

used up crayons

she peeled 

the wrappers off

for me 

knowing

I was going to 

melt them into

new ones

for the kids.

As I sat there

sorting colors

touching moments

trying to 

remember

I did

of all the times

moments

many crayons

in my lifetime

I remembered

these

the short

the fat

the thick

the oily ones

the ones that were

wrapped in

a black wrapper

labeled simply

crayon

they fit snugly

into a black

art case 

I used to carry 

everywhere

and draw.

I was maybe 8

I would lay out

this portable studio

many times

next to a blank

bright white

fresh sheet of paper

pop out one

of the cool

"crayons"

from the case

and make 

the darkest

the smoothest

the richest

colored 

works of art

I remember.

And now 

here I am

here they are

my crayons

laying on

a white sheet

of paper

that my girl

 

just the other day

had drawn on

my crayons

and 

her signature

scribble with circle

that in this moment

looks like

pure love

how fitting

that the fate

of these crayons

my crayons

is to be 

melted into 

love

 

and used 

to create

even more

love.

And that is
exactly
what it is
about
love
creating moments
keeping memories
doing things
that we
love
with the people
for the people
that we
love.

Even if
when
not everyone
wants to do
all that you
love

I told you the girl could hold the crayon for real!

you find

other things

memories

moments
in life
that you
love.

Look who can do somersaults, my boy!

And you 

embrace

all that

you are 

given

with love.

I love Art.

I love the materials.

I love the creativity.

I love the possibility.

The purple blur near his shoulder is her flinging the play-doh!

I love the process.

I love the product.

I love the potential.

I love the mess.

I love the clean up.

 

I love the mistakes.

I love the moments.

For me

Art has 

always been

life

my life

and once my life

changed

I had to find

a new way

to let the Art

back in

but really 

it's always been there

because now

I see

for me

Art is Love.