Friday, April 25, 2014

Eli's Final Journey

I have gone round and round in my mind if I'm going to share this video publicly or not.
Some of my closest medical mommas have seen it but that's all.
I have held onto it for almost 1 yr, as this video was made a week or two after Eli's funeral.
I have decided now, on this day, 1 yr after my son was wheeled into his final surgery, to share.
Why? Because first of all it's beautiful, it's my baby. It's our journey. Nothing can show more about what we went thru than this video.
This is my tiny man's final journey. This was our family's journey. This was our life.
This isn't a made for lifetime movie. This isn't some distant family in the media. This is us. This is our life. We felt this, we lived this, we asked the questions, we made the decisions, we held him while he died, we washed his lifeless body, we walked out of the hospital pushing his empty wheelchair. This is us, raw and unedited.

This video starts with a video made 2 wks before, goes thru his surgery, going home, the ER, the PICU, Eli's death, and selecting his plot.
There is a separate video for the funeral and burial that I will share in a few days.

Again this video is raw and unedited. Do NOT watch it if you are not able to handle that.

Here is the blog post with written details of that night for those who need the written info.  "What Happened"

Friday, April 18, 2014

Tick Tock Tick Tock

1 week
2 days
19 hours
16 minutes
2 seconds

I can barely breath.

Monday, April 14, 2014

Just love us, please

My heart is aching.  My soul is screaming in pain and agony.
The feelings are starting to fold in on me.  I feel bound and weighted.
Suffocatingly the clock is ticking, so fast.

My birthday is 1 week from today.  My last birthday was the first time I left my little man for the weekend.  He was so happy, so healthy, so strong.  I spent the weekend away, forever losing my last weekend with my son.  A time I can NEVER get back.  I never spent another weekend with my family, whole and together.  Never again another happy Saturday morning waking up with Bob, spending that slow morning getting Eli ready for the day.  Never another quiet Sunday morning, just Eli and I while everyone was gone.  NEVER.  Those moments are forever gone, never to be had again. 

The guilt I feel for missing that last weekend.  The pain.  Never did I know that I would lose my son 1 week after my birthday.  1 week.  The thought of acknowledging my birthday, let alone celebrating it feels torturous, painful.  The guilt overwhelms me.  How can I celebrate the fact that I left, I missed that weekend?  I can't.  Maybe some day but right now the emotions are running SOO high and I can't do it.

2 weeks from today is Eli's 1 yr angelversary.  I can't.  I simply can't.  The pain is building, like I would have never thought possible.

3 weeks from yesterday is 1 yr since we buried our beautiful tiny man.  3 weeks from yesterday Bob and I will be running our 1st 1/2 marathon.  We will be crossing the finish line at almost the exact moment our Son's coffin was lowered into the ground.

Right now I simply can't find words to convey how I'm feeling.

What I can say is please be gentle with us.  Please give us some leeway.  Contact us.  Talk about him.  Share stories and pictures. Keep his name and memory alive.  Come over and sit with us.  Cry with us.  Please don't push us though.  We have to do what we NEED to make it thru these next few wks and the lifetime before us.

Please don't tell us that we are "doing this the wrong way", for there is no right or wrong way.  We are doing this the only way we know how, one breathe at a time.  Just love us, just love our tiny man.

Always and forever tiny man.

Saturday, April 5, 2014

Poetry

This Horrible Yet Wonderful Grief - Rewrite
by Emily Moore
This grief this horrible yet wonderful grief
it will crush your heart
and change your life
it will motivate you
but it will drag you down
just keep going
they are angels watching over us
guardians of the night
keeping away fright
it comes and goes just like day and night
up and down like roller coasters
but will never grind to a halt
still thinking it's my fault.
The time flies by
as I see the sky
the sadness engulfs me
the hidden tears now run free
all the what ifs
all my thoughts saddened
my heart becomes distraught
my mind overwhelmed
my heart unbound
as I remember
the December day you were born
I also remember that frightful night
when your light was burned out
the air fills with heart breaking screams
wishing it was a dream
on that night
i watched you battle
you lost the fight
i watched 4 children
one by one
their dreams crushed
their lives changed
their hope lost
their confusion
their misunderstanding 
mom crouched over calling for her baby
dad saying save him, save my son
doctors running
On that fearful night
that tragic night
I learned a lesson
between 
life 
and death
I learned most of all
how fast your life can be changed
how quickly things can be rearranged
this horrible and wonderful grief
made me sad makes me mad
but also taught me lessons
brings old memories fresh to mind
making the time fly by

Fear
by Emily Moore
What will I do
How will I carry on
I have to face it, you're gone
almost 12 months have flown by
like birds in the sky
Still I remember when I grasped your hand
I fear for what will happen
When it reaches a year
Can't shake this feeling
of sadness anger and fear
I have had this feeling all year
A year without your smile
your face, your laugh
your heart used to beat all so precious and perfect
your little art you left in the rooms all now empty and bare
Your smile still fresh in my mind
I can no longer see
Your laugh so heart-pulling
Is no longer ringing
I hear nothing, nor see a thing
I see colors of your youth
very tiny, only three
I see and feel you near
When I stand here
The wind blowing through my hair
The butterflies in the sky
But now I'm left here wondering
How I'm supposed to keep going
To live laugh and carry on
When the simple fact is you're gone.

Memories
by Emily Moore
Seems like it just happened yesterday
we were laughing and playing
saying I love you tiny man
you would laugh till you fell over
your little snort and cough
you lit up any room
consuming in books making us sign them
your toys covered every corner
your glasses down on the end of your nose
your cheeks like roses
your smile so bright
sleeping so soundly at night
clicking sounds when you cuddle
made my heart melt like ice to a puddle
your clapping at the worse times
signing reading you all your books and rhymes
your little waddle when you walked
oh so cute and perfect
the way you talked and signed hi
never wanting to say bye
your little sign language
demanding everything you signed 
your hands and feet so tiny
you were sometimes so whiny
seems like forever
since I've seen you so clear
thinking of butterflies
and hearing cries of happiness and sadness
remembering those days
those beautiful wonderful times
feels like it's been years
but in reality it's been almost a year
I will always have memories of those 3 years
always will be clear
as my tears will fall
as I hear you call
hi for the last time
remembering the good and bad times
never will they be forgotten.

Stories
By Emily Moore
written following her friend's suicide
Everyone has stories
good and bad
they can happy or sad
also scared or angry
it depends on the person
they can have memories
fun or boring memories
stories can end quickly like death
or can be long like life
stories can have first loves
and heartaches
they can have old and new beginnings
they can have color
black or white
emotion or emptiness
everyone has stories
they can inspire or can be powerful
but stories are words
and words make big differences
so before you end your story
just think about other people's stories
stories that are similar to yours
stories that have endings and beginnings
so before you do anything you regret,
what's in your story?


Wednesday, April 2, 2014

No Words

Emily jumped in the car today and told me that there is a Poetry contest at school and she's entering.  Then she started to read.  Gosh darned the girl because I was attempting to drive.

"This Horrible Yet Wonderful Grief"
by Emily Moore, age 13

There is a grief that ages the face
and hardens the heart
and softens the spirit
A grief that casts shadows on the eyes
yet broadens the mind
A grief that keeps the pain and has no words
but increases the understanding
There is a grief that breaks the heart and wounds the soul
that lasts and lasts and can shatter in a minute
but will inspire for a lifetime
It comes and goes just like day and night
up and down like roller coasters
but will never grind to a halt
still thinking it's my fault.
The time flies by
as I look up into the sky
The sadness overwhelms me
as the bottled up tears run free
all the what if's
are thoughts as
my heart is distraught
my mind overwhelmed
my heart unbound
as I remember
the December you were born
I also remember that frightful night
when your light burned out
I then put out a heart breaking scream
wishing it was a dream.
On that night
you lost the fight
I watched four children
one by one
their dreams crushed
their lives changed
their hope lost
their confusion
their misunderstanding.
On that fearful night
that tragic night
I learned a lesson
between
life
and death
and I learned most of all
how quickly your life can be changed
how quickly things can be rearranged
I learned and am still learning...