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"

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Tick Tock Tick Tock

1 week
2 days
19 hours
16 minutes
2 seconds

I can barely breath.

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.

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?

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...