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...

Friday, March 28, 2014

11 Months TODAY

I haven't blogged for quite a while.
Why?

It's quite simple.  My heart is shattered.  I am finding right now that it's getting worse by the day.  Today is 11 months.  I am back to waking at 4am.  Many a night the silence is deafening.

I am training so hard for the 1/2 marathon.  I can't believe I'm doing this.  I can't believe I'm doing this on May 4, 2014.  I can't believe that on May 4, 2103 I crumbled as I watched my baby's casket being lowered into the ground.  I will cross the finish line at almost the exact same time his casket was lowered.  I can't believe that this is only 6 weeks away.

Today I was contacted by a friend of mine.  A good friend of hers is facing a Mito diagnosis for their 9 month old baby.  She was terrified as she had followed Eli's story, our journey.  I wanted to tell her it will be ok.  I wanted to tell her that Eli was such a unique case and that for most kiddos it will be fine.  I wanted to tell her that there are tons of resources and meds and cures and doctors.  I wanted to tell her all these things.  But how do you make a NEURODEGENERATIVE PROGRESSIVE ultimately TERMINAL disorder sound sweet and nice and ok?  It's NOT ok.  I am well aware that everyone is different, that the disease is different for each person, and that everyone's journey is different.  Sadly that doesn't change Mito, that doesn't stop Mito.

Mito doesn't just affect the patient.  It changes the family, the nurses, the doctors, the community that loves them.  Mito shatters lives, its shatters families, it shatters community.

Where will their journey take them?  I can't predict that for sure.  I can guess.  From our journey, from our friends journeys.  Mito brought me a community, a family, lifelong friends.  I have watched over these 4 years as that community has changed, I have watched the progression, the loss, the heartache.  I have heard the screams from all over the world with each diagnosis, each progression, each angel's passing.  I have grieved.   Mito brought me more pain than one person should ever have to feel, pain that isn't possible to handle, pain that consumes me.

I want to protect them.  I want to protect us.  I can't.  All I can do is be honest, but supportive, and then shatter into a million pieces letting the tears pour in the quiet alone moments.

Jace had to write a motivational saying for PE.  He came home so proud.
At the top was Eli's footprint traced from Jace's team Eli shirt and then colored in orange.
Below it was his saying "Live Life Like it's Your Last"
He's 10.  My beautiful boy knows what this means.  He knows.  His tears bathed our baby's lifeless body that day.

Please take what Jace wrote to heart.  It happens so fast.  16 hrs after I held my baby, 16 hrs after I saw his beautiful eyes, 16 hrs after he saw me sign "I Love You" He was GONE.

The world will never be the same.  11 months later the tears still flow.  Today my heart breaks for us.  Today my heart breaks for this family going thru testing right this very moment, as the doctors suspect Mito.

11 months.  I beg the world to pause, time to stand still.  I'm not ready for 1 yr.  Time is going to fast.

Always and Forever Tiny Man.

Friday, February 14, 2014

Valentine's Day Grief

It's a happy day.  A day of love.  A day of cuddling and kissing.  A day to snuggle with the ones you love and pamper them even more than a normal day.

But that's not quite right.  One of my most precious valentine's isn't here.  But you guys already know that.  You already know I'm broken and missing my beautiful boy.

What you may not know is that this week alone 3 more kiddos have passed.  2 had Mito, 1 had a CHD.  2 I am friends with their moms, 1 I didn't know.  One I more than knew.  I have held him.  I have watched him play and nap.  I  have traded medical supplies and stories with his momma.  He and Eli have shared the same doctors, therapist, and dietitians.  My heart is breaking.  My heart is breaking for them.  I would love to tell you that my heart is only breaking for them, but I would be lying.  My heart is breaking for me too.

Monday I will walk into the funeral of a 3 yr old boy that I watched grow.  I will hold his grieving momma, just like she held me 9 1/2 months ago.  I will cry tears for them, for us, for our boys, and for our medical community.

I crumbled under the weight of the deaths this week.  Sometimes I want to run and hide.  Lock myself away from the medical world.  The pain is immense, sometimes to much to handle.  I no longer just grieve for each loss, I grieve for their loss and for mine.  Oh do I grieve.  But here I remain.  Standing as strong as I can.  This is my community.  This is my family.

I think back to Eli's passing.  I think back to the grieving mommas who reached out to me.  I remember asking them how?  How do I do this?  Telling them I can't.  I remember the things I said, the tears I cried.  I remember placing my burden before them, knowing all to well how much they were struggling with their own grief.  I remember them encouraging me to do just that, I remember them saying I'm sorry, I'm here.  I remember all of it.  I look back now and I KNOW how their hearts were breaking at that moment.  I know now how damn STRONG they were right then and their to be taking my burden on with theirs.  To be up talking about the details, listening to me cry and scream, receiving the same texts over and over that I couldn't do it.  The pain I now know that they were feeling at that moment, and they did it.  Never wavering, never telling me enough, never once shying away from helping me.

You know why?  We are a select few.  We are a community.  It's my turn.  I don't feel strong.  I feel so weak.  But you know what, I bet they did too.  It's my turn.  9 1/2 months later I will be that momma, that friend, that broken hearted grieving momma who says I'm here and we can get thru this moment by moment together.  It's my turn.  I will do the same as those before me, I will be strong and I will bear my grief and theirs; knowing that sadly one day it will be their turn as well.  This community that we live in guarantees that there will be more children ripped from their families arms too soon.  This is not the end.  There will be more who join our grieving ranks.

All I can do is vow to be there.  I will be there now and anytime in the future.  I will be here day or night.  I will hold them up when they simply can't do it on their own.  I will carry the memory of their battle, of the precious beautiful child.  I will honor them.  I will grieve with them.  I will stand strong, for I know that it's their time to grieve.

What would I ask of you all?  Please help carry their memory's too.  Please help support us "seasoned" grieving mommas too.  We are the front line for the "new" grieving mommas and this brings us a new wave of pain and grief that we have to be careful with as this is THEIR time to grieve, and we will grieve with them because damnit their child was amazing and they will be forever missed.  Be our support, so we can support them to the best of our abilities.

Finally always love our babies and always always always know that our beautiful babies are up there watching over our ENTIRE community and are immediately welcoming as their heavenly community expands.

We are the grieving mommas.  It's one hard road, that none of us want to be traveling down.  We will stand strong and we always have open arms and open hearts for each new broken family that joins our ranks.
Damnit we are Hero's.  We have endured more than that body and heart and soul was ever made to endure.

So yes it's Valentine's Day, and my heart is grieving, my heart is broken; not just for me and my beautiful boy; but for all of us.  Love to all the grieving broken hearted ones on this day and every day after; for you are MY heros!

Monday, February 10, 2014

Quick Life Updates

Swamped.  That sums up life.  We are swamped.

Jace has been so sick.  He has been sick for 2 weeks, pneumonia and strep.  It was rough seeing him sick, and mentally and emotionally draining knowing it was pneumonia.  My heart struggled with that a lot.  His fever is finally down, still a lot of coughing and a bit of wheezy breathing.  They have him on an inhaler now as well.  Trying school today, we will see how it goes.

Emily's elbow is healed she's back at her violin.  She had seating auditions yesterday and is working hard for their upcoming concert.

Benjamin.  My little Benjamin.  He's struggling.  His doctor changed some medication dosing to see if that helps any.  He is also referring Benjamin to a psychiatrist to get set up with her.  Also he's sending him to a neurologist (Eli's old neuro before we moved to KC) to make sure that Benjamin isn't having seizures or anything neurologically that we may be missing.  Lastly, and most painfully, he is sending Benjamin to a geneticist (yes you guessed it, Eli's old geneticist before we moved to KC).  He suspects that there is an additional diagnosis, and he suspects that it's what has been talked around for years.  My mind knows that EVERY single person is affected differently.  My mind knows that it's NOT the same as Eli.  My mind knows it's different.  That doesn't change the fact that my heart and soul are screaming in agony that I simply CAN'T go down this road.  We have agreed to the referrals and will move forward down a road we have already travelled knowing that refusing to move, won't change it; but it doesn't change me from wanting to dig in my heels and not move.

Ariana is busy as always with school.  She has stayed happy, healthy, and injury free.  Only change with her is she is now the proud owner of a toothless smile as the top middle came out!  She's excited for her 7th birthday on Thursday and is still picking what she wants for her birthday dessert!

Bob and I have a medical family that we met yrs ago, that we are helping out.  We met them when Eli quit breathing at RMH in KC in January 2011.  They brought us up bags full of food to the PICU and we all immediately hit it off.  They had 5 kids, their youngest being their medically complex.  They have recently been hit hard by life.  The husband/father is very sick himself, and they have lost their home.  We have borrowed 2 of their children as of yesterday, and 1 more as of wednesday to allow them to only need 1 hotel room.  That takes our kid count in our home to 7; ages 14, 13, 12, 10, 10, 8, 7.  We are thankful that we are able to help, and are hoping that this gives them the breathing room they need to be able to find a new home.

Me.  Where am I?  I'm training for my 1/2.  I'm putting in quite a bit of miles and adding in strength training workouts as well.  I'm going to do this.  There is no doubt in my mind.  
I've had a few emotionally rough days lately.  Thoughts of Eli and that night have flooded my mind.  When Bob & I were in town we were able to go and spend a bit of time with Eli.  It was very nice!

So all in all were are we?  We are busy.  We are overwhelmed.  We are still taking it day by day.  We are pushing thru for ourselves, for our friends, our family, and for our beautiful little boy.  We are holding strong onto the hope that life MUST settle at some point, I just hope it's soon!

Thursday, January 30, 2014

SocialBook

I saw a link on facebook about SocialBook.  It is a company that takes your facebook statuses, pictures, comments, etc and makes it into a book for you.  I had heard of it before and had wanted to do it for 2013, as this was a year I would like to have bound together forevermore.
I clicked the link and it made up a preview of what  the first bit of my book would look like.  The very first page showed my very first status message that I posted on January 1, 2013.
I read it and my heart dropped.
It is typed below word for word, capital letter for capital letter, punctuation exact.

"My 2013 New Year's goal???  Get my ENTIRE family to January 1, 2014 with as MANY good memories and laughs as possible and as FEW scars and tears and pain as possible.  For some families this may seem like a given, but for our family and so many others I know this is a monumental, sometimes heartbreakingly, insurmountable goal.  There are families hoping for hrs, minutes, days and weeks.  Love to all the fellow warrior families out there, you guys know who you are.  Peace and strength to all of us."

Wow.  The things I wish I had known that moment.  That very moment my heart was breaking for the families barely hanging on.  For the families saying goodbye.  For the families watching a year tick by without their babies.  I had no clue at that moment.  No idea what this status meant to us.  No idea what was to come.  No clue that 5 months later I would be kissing my baby's cold head before his coffin was closed for the final time.

We become so involved with the other families in the community.  We love them.  We cheer for them.  We are willing to fight for them.  We grieve with them.  Our heart breaks for them.  We know all along that it could have been us, but we also know it wasn't.  We blindly go forward. We think it will never be us.  We never expect to see the profile pictures changing to candles with OUR child's name on them.  Never.  Never.  Never.

That being said it crosses our mind.  It crosses our mind late at night as we hear the sat monitor beeping, deep in the belly of the hospital as we see the look on the doctors face, in the PICU in the middle of the night as more and more meds get brought in, when we hear "crappy lung sounds".  It flashes thru our minds.

Then we see their progress.  Their improvement.  We see the FIGHT in our HERO's eyes!  We see the shine, the glimmer in their eyes.  We see the smile that could melt every drop of ice in the world.  They are invincible!  They are hero's.  Flesh and blood, real life, no doubt about it HERO's!  and DAMNIT our HERO will never die.  It won't happen.

We tap down the fear, we tap down the pain, we tap down the terror.  But we can't get rid of it.  It sits there.

What was on my mind that day, on January 1, 2013 when I typed that status update on facebook?  I can't tell you for sure, but I can tell you it was pain, and fear, and pleading.  Oh the pleading!  Begging for it to NEVER be MY HERO!

Yet 5 months later it was MY HERO!  God how I miss him.  It was insurmountable.  We lost the battle and sadly so did many other families.
Fuck Mito.
2013 was a dark year for so many of us, the lights that went out that year have left a darkness on earth, a void.  The light that our HERO's shown around the world, is deeply deeply missed.

Tuesday, January 28, 2014

Running out of Options

Benjamin has been struggling.  A lot.  He is finally in a school environment where he is expected to behave appropriately and complete his work.  This has been a big struggle.  When you combine that with some other things going on with him, it's been volatile.

I am on a first name basis with the principal, as Benjamin has been struggling so much.  We have already had to have repeated IEP and team meetings and plans are constantly changing.
Everything came to a head yesterday.

Benjamin slapped a girl 3 times across the face.  The teacher tried to get benjamin out of the classroom and into a safe place.  Ben resisted and because verbally aggressive.  The vice principal came down to attempt to remove Ben from the classroom.  Ben again refused.  He put up hand on ben's arm and tried to lead him out.  Ben absolutely flipped out and tried to run away.  He got Ben down a side hallway that didn't have classrooms and at this point Ben was in full blown meltdown mode.  Ben kicked his shoes off, threw himself around on the cement floor, bouncing off the cement walls.  He was screaming, yelling, name calling, kicking, hitting, everything.  The principal was called as nothing was working to keep benjamin safe.  Benjamin saw an exit and took off running in socks thru the school hallways.  They split up chasing him.  He was finally located back in his classroom hiding at his desk.
This is not the 1st time that this has occurred.  It's getting worse and worse.

These are not the only behaviors that are occurring either.  He now refuses to do any writing.  All of his work is scribed for him by his para.  He hasn't picked up a pencil in weeks.  Writing has always been a struggle for him, but it's never been to this point.  The goal is to get all of his work switched over to the Ipad but this isn't something the school has ever had to deal with, so they aren't sure how to go about doing that with the full curriculum.  So currently Benjamin runs in circles yelling out answers while his para scribes it all for him.

He's no longer able to handle any rotations or transitions at school.  He is now pulled out of his classroom and he and his para do separate work in the IR room alone.  He can't handle indoor recess, assemblies, or any of those events either as he is no longer dealing with the smaller spaces and lots of people and noise.
He's not making it thru recess, or lunch, or music or pe.  He will require complete 1 on 1 support for those activities as well.

The weighted vest is no longer effective.  They have had him in a short sleeve compression top, but the OT feels he needs more.  They will be transitioning him to a long sleeve compression top and full length compression pants.  They are having to make changes on his sensory schedule and the sensory room to better meet his needs.

It is clear that Benjamin needs a safe space to go to.  He needs to also be trained to go there on his own as he can't handle any touch or redirection.  There is an office right across the hall from his classroom.  They are going to be creating a table and turning it into a tent with origami paper and other calming activities for him.  The goal is when he panics that he runs there instead of away.

He is also being given a fleece blanket at all times that he can keep wrapped around him while he is trying to sit.  His chair will again be changed over to a special trampoline type chair.  They are going to be trying out pineapple gum to see if the constant chewing may give him some sensory input that he so desperately needs.

There are a lot of concerns about the path we are going down with Benjamin, but at this point nobody is sure how to stop the ball from rolling.  Safety is currently a huge concern, for him and for the people around him.

His teacher is so frustrated and was darned near in tears talking about the classroom concerns.  The entire team said they have never experienced a child that can go from 0-70 in 3 seconds with no warning and no idea what even caused it.  He has ZERO currency, as in nothing motivates him, and nothing punishes him.

He doesn't communicate.  It's all about what he wants and that is the only thing he will speak of.  He doesn't understand.  He feels no shame, he has no regrets, he doesn't care what others see or think.  He is verbally abusive and has become very physically abusive at school.  He is destructive.  He puts himself in harms way.  His obsessions and anxieties are running rampant.

The team hasn't given up but we are definitely running out of options.  We are flying down a slippery slope at 90 miles an hr and nobody knows how to turn it around or put the brakes on it.
Currently Benjamin is on at home suspension and the goal is to have him resume school tomorrow.  The accommodation list on his IEP has grown to 23 pages long, and they are hoping to get a large bit of the new changes in place before his return tomorrow.

I'm exhausted.  I'm at the end of my rope.  The school is too.

Currently he is curled up in a ball on his chair, in a meltdown because he has 7 math problems to do.  The options for me are limited.  I pick up the pencil and scribe for him, or the work doesn't get done.

I wish I could reach thru all of this and get to the inner benjamin, but I can't.  The autism, and OCD, and anxiety, and sensory issues have become all consuming, they have taken over and we can't seem to figure out how to reach thru to Ben.  My heart breaks watching him struggle, and I don't know how to help him.

Wednesday, January 22, 2014

Breathing for Two

37 wks and 4 days was how long I was pregnant with my beautiful tiny man.  I breathed for him for 37 wks and 4 days.  He was safe, protected, held close.  I held him as my own, only mine, for 263 days.

My baby was by my side and in my arms for only 177 weeks 6 days.  I tried to breathe for him.  I tried to give him the fullest life he could possibly have.  We made everything bigger and better, we celebrated more, we snapped more pictures, we made every moment as huge as we could.  We provided the medical support to keep him breathing.  I literally lived for him, thru him.  I was him.  I spent 1, 245 days keeping my baby alive.  That seems so short when you break it down into days.

Here I sit, with empty arms for 38 wks, 3 days; the longest 270 days of my life.  My hands are idle.  My mind has so much information that isn't needed.  My senses remember.  Muscle memory is there.  Sometimes I hear feeding pumps beeping, and HR monitors ticking, and O2 machines swooshing; where there is none.  I find an old syringe laying around and next thing I know I have pulled the plunger back to just the perfect med dose of 3.3mls.  I can picture the squeezing rhythm I was taught on the ambu bag.  I see the dial on the stove and remember the dial on the O2 tank.  I think often of his doctors and nurses and how much I miss their voices, their laughs, the clicking of those dang cowboy boots as he walked the halls of the hospital.  I hear the sounds of the bed rails of the hospital bed, squeaking loudly no matter how quiet we tried to be.  I see the sign when I look at a kids book before the word.

I'm no longer breathing for me baby, some days I feel like I'm barely breathing at all.  Then I found read something.  Something that touched the very depths of my soul.


"Then I know with every breath you take You'll be taking one for me"
WOW.  Like WOW.  I'm always one to have words, but this is something felt deep inside of me, that words can't touch.
I'm breathing for my baby.

I knew something had to happen.  So here I am.  I've put in 35 miles this month.  I hit my longest run/walk ever at 10 miles in one workout.  Today I broke my fastest mile by 1m5s.
What is this all for?  I'm breathing for Eli, I'm running for Eli, I'm doing this for Eli.

My beautiful boys coffin was lowered into the ground on May 4, 2013.
I will be running my first 1/2 marathon on May 4, 2014.
I'm doing this.  We are doing this.  I'm breathing for Eli, although most days I think Eli is breathing for me.

After my big run the other day, one of my best friends said something that was heartbreaking and beautiful and amazing to me.
"May the pounding of your feet crush the broken pieces into something new"

Again WOW.  Speechless.

Lastly this week I saw a pin on pinterest.  "The cure for pain is in the pain."  WOW again!  Don't know how many times I can say WOW.

This all leaves me knowing I'm doing the right thing.
I'm breathing for my baby.
I'm crushing the broken pieces into something new.
I'm journeying thru the pain, not ignoring it.

Does this make it easier?  No.  Does it fix it?  No.  Do I still hurt more than words could ever describe? yes.

Foot to pavement.  Over and over and over.  The wind pounding on me at points.  The cold.  The heat. The rain.  The snow.  My lungs burning.  My muscles tired and sore.  My mind screaming stop.
My heart and soul screaming GO GO GO!!!
Running blocks the pain, running brings on the pain.

In closing..
"I keep so much pain inside myself.  I grasp my anger and loneliness and hold it in my chest.  It has changed me into something I never meant to be.  It has transformed me into a person I do not recognize; But I don't know how to let it go."

I will find my way.  My baby's wings will carry me thru when my feet can no longer move.

Always and Forever Tiny Man!

Tuesday, December 31, 2013

2013

2013 has robbed me of my very breathe, has broken my heart into a million pieces, and has shattered my soul.  I can't wait for the year to end, yet I'm terrified to never again live in a time that my baby took a breath.
I came into this year a very different person that I leave it.

This year has seen brain surgery, many hospitalizations, the death of our beautiful boy, the burial of our beautiful boy, the loss of my husbands job, our finances in shambles as we struggled to pay for a funeral, our move home, and the struggles of our oldest 4 as they grow and learn to deal with grief.  This is a very vague summary of what we have seen this year, but it hits the highlights.

Again I stand by what I told the doctors that night as my baby lay dying in front of me.  I told them, "I will die with him, I will take my last breath as he does.  I will die too".  I did.
I died that night at 4:08am, I took my last breath.
My heart, my soul, my spirit were crushed.

I am still drifting, still gasping for air, still trying to find a place to grab hold, trying to find a sliver of who I am.
It is beyond hard to find a person in the ashes, to rebuild from such damage.  The strength and willpower and determination that are needed to piece together the broken pieces is simply to much, right now it's not something I have.
The pieces won't go back together.  They no longer fit.  There are to many shards and splintered pieces, to rebuild.  I am forever damaged.

My hope for this year is to find something.  One piece that I can grow and latch onto and cultivate.  One piece to begin building around.  One piece of who I was, to begin building who I will be.  That one piece will still be broken, damaged, tortured, but my past must move forward with me, as there is no other way.
That one piece must be memories, my love.  The most painful piece to carry forward, but the one piece that I could never bear to leave behind.

I want to take this moment to thank you all for hanging in there with us during this most painful of years, 2013.  I can't tell you how blessed we are to have you all in our lives, as I truly can say I wouldn't be where I am now if it wasn't for so many of you.  We have gained friends, lost friends, grew friendships, and changed friendships.

I want to thank you for bearing with us, for allowing us to grieve, for supporting us no matter what.  Very few have tried to change the course of our grief, many have fought for our rights to grieve, and almost all have held us up in our grief.

I would love to tell you that we are ready to take hold and do this on our own, but I'm not there.  I'm trying.  I truly hope that you see that I'm trying so very hard.  I'm searching for something to grab hold of, something to keep me a float.  There are days I think I'm almost there, days where I almost look real and whole and alive, even though I'm dead inside.
I promise to keep fighting, to keep moving forward.  I will rebuild.  I will.

Lastly thank you for loving us, for loving our tiny man.  We never doubted how loved we were and how loved Eli was, but seeing the love and support these last 8 months has been overwhelming.  We know our tiny man lives on in so many hearts around the world.

So here we sit.  There are hours left of 2013.
My baby has been gone
8 months, 5 hrs, 45 minutes, and 4 seconds OR 35 wks, 2 days, 6 hrs.
The rolling over of a year won't stop that clock.
For good and bad the year has ended, and the new year is unpredictable.  We sure learned how life can change in a single breath this last year.
I can only hope that this new year is gentler, we can't handle anymore.

It's time to rebuild.  It's time to find something in the ashes.
2014 here we come; be gentle to our family and to our Mito community.

Fly high tiny man, but always stay close.
Always & Forever

Sunday, December 22, 2013

Moment by Moment

It's the final stretch before Christmas.  For our family this means no longer months and weeks to prepare.  We are no longer taking it day by day.  
We are down to moment by moment.  What can we do to hold it together for that moment in time?  
It's been hard.  
It snowed yesterday.  I clearly remember this past January.  We had a big snow storm after my brain surgery.  I remember watching my tiny man watching out the window as it snowed.  He watched his siblings play and got so frustrated that he wanted to go out too.  Finally his nurse bundled him up in so many layers and out he went.  Eli got to be outside in the snow.  Who would have known that would be his first and last time to ever stand and walk in snow.  He was so excited and smiled his big beautiful smile.
There was only 1 other time he was ever in snow.  When he was 1 yr old and was so sick.  We were hospitalized and it was the first time the doctors began talking to us about quality of life.  We pushed so hard and finally they agreed.  We put layers of clothes on Eli, bundled him up with so many blankets, but on a face mask, and laid him in the red hospital wagon.  Of we went.  He spent 3 whole minutes outside looking at the snow and even touching a small handful.  
It again snowed on our private family visitation day with Eli at the funeral home.  We got to spend hrs together as a family, talking to him, taking turns alone working on the sticker book that he never got to do, and relishing the final times to ever touch our baby.  It snowed that day.  It snowed on the van, the snow covered the tulips in front of the funeral home.  It had to be our tiny man.
So here we are days before Christmas with snow.  The kids wanted to go out so out we went.  Bob and the kids ran and had snowball fights, made snow angels and laughed and played.  I took pictures and drew Eli's name in the snow.


My heart was breaking.  Everything reminds me of him.  Everything reminds me of the emptiness now.  Everything reminds me that this will never end, that this will be the rest of our lives.  I grieve for it all.

After everyone warmed up the kids were needing to keep moving.  So that we did.  Down to the pool we went.  




These final days have brought about a stillness over our house, an anxiety in the kids, the missing piece is so apparent.  

I have been constantly amazed at the strength of our kids and at how very clearly they grieve.  It is different then how we grieve as adults, but boy do they grieve.  They feel the emptiness.  They feel the loss.  

The days building up to Christmas this year haven't been the same.  There are a few things they have insisted on to make the holidays feel like normal, mainly a Christmas tree, but other than that there hasn't been the Christmas push.  I long for it be over, even though I know it won't truly be over.  Never again will it be the same.  I grieve for what the older 4 have lost.  They haven't just lost their brother.  Their hope has been crushed.  They have learned how quickly life can change.  How cruel the world can truly be.  They have lost the childish belief in all things good.  They know it simply isn't so.  I grieve for the innocence of my children.  

I grieve.  I grieve for it all.  I grieve for what was.  I grieve for what never will be. 
It is overwhelming, all consuming, exhausting.  I'm exhausted.  I'm broken.  I am not strong. 
I had many a long talk with one of my best friends this week and she said the words I've needed to hear for so long.  She told me that she sees me, she sees that I'm broken, that it's ok.  She said she sees me, and I truly believed that she meant it.  It meant the world to me.  Such simple words, but knowing that she truly SAW me right were I was, broken and grieving and lost.

So here we sit.  Moment by moment.  Playing games, watching movies, playing in the snow, swimming, baking, drawing, and anything else we can scrape together to keep us moving forward, to keep us busy, to pass the time.  For we know in a few short days there will be no denying that it's Christmas day and our baby is GONE.

Tuesday, December 17, 2013

Rough Week

I'm struggling this week.  I've been in a bit of a slump and can't seem to pull myself out of it.  Christmas is so close.  It's really hitting me hard.
To top it all off the boys are a mess.

I will start with Jace.  He's continuing to have problems sensing when he's losing control of his temper and stopping the explosion.  Yesterday at school he was asked by the teacher to sit down and he refused.  He was asked again and was verbally aggressive with his refusal.  The teacher said sit, or I call the principal.  Jace apparently sat down very angrily and began muttering very mean things under his breath.  The assistant principal talked to me this morning, letting me know that he would be pulling Jace out to have a long talk and that Jace would be punished.

Benjamin.  Oh my little Benjamin.  I don't even know where to begin.  Our school in Overland Park didn't hold Ben accountable to the same standards as the other kids.  He didn't have to do his work, he was allowed to be up and moving and to roam around.  They simply didn't push him to keep life with Benjamin easier.  Our school here will not allow that and expects Ben to do his work, be with the group, and be respectful and safe.  We are beyond thrilled that this is what they expect of Benjamin.  Problem is Ben isn't thrilled.  He's struggling.  We have now had 3 IEP mtgs since moving here.  Each of his day reports this last week or so have showed major issues.  Benjamin is hitting, pushing, stealing, arguing, yelling, and refusing to do work.  Yesterday sheet came home showing that he had hit and/or pushed 3 students as well as his para.  The IEP meeting today discussed alot of these changes with Ben.  

The decision has been made to regress back to a full visual TEACH schedule.  We will use pictures and words and they will be mapping out every aspect of his school day.  This used to work well for Benjamin and with the big struggle they feel that it is worth a try again.

Secondly they are going to start scheduling sensory breaks and see if they can find a schedule to have him going BEFORE he actually needs the break.  Once Ben hits his limit, he hits it hard and fast and it's hard to back track.  So hoping to get ahead of it and keep sensory breaks often enough.

PT met with Ben, and evaluated him for the concerns with stairs.  Currently the hope is that Benjamin simply needs more practice going down stairs.  We will begin working more on stairs and see if that helps him get comfortable with it.

OT also has done some further evaluations.  She spent a bit of time watching Ben use a pencil and going over writing samples.  It doesn't appear like the issue is specifically with his hands, although he is a bit awkward holding the pencil.  He does have issues writing and forming letter and number shapes.  He does all of his writing from the bottom up and this causes some problems.  It is also hard for him to focus long enough on his writing so it gets very slanted and sloppy.  They have decided to keep working with him on writing but starting to push him towards keyboarding.  They will begin having him practice more, and the long term hope is he will pick it up and be able to do a larger bulk of his work by typing on a computer screen instead of having to use pencil and paper.  Currently Benjamin isn't interested in typing either, as he just wants to play games on the computer.  It will be a slow process.

Next Benjamin is struggling on the bus.  This last week the assistant principal even had to get on the bus to deal with him.  It has been decided that Ben is struggling to much on the bus for that length of time without any direct adult supervision.  The school has decided that they will be changing Benjamin's busing and putting him on a special needs bus with para supports.  They are hoping to have this start tomorrow morning.

Not even 2 hours after I left the school, my cell phone rang.  It was the school's principal.  Benjamin was in his office.  Ben's para had taken Ben for sensory break and had a list of 3 activities he was to do.  Benjamin didn't want to, he only wanted to play with the ball.  She told him no.  He threw it at her and took off running.  As she chased him thru the school he yelled at her to "fuck off".  He was finally captured and taken to the principals office.  He informed the principal he learned this from Minecraft videos.  (We have known for some time about the minecraft addiction.  Ben is literally addicted to it and goes thru full withdrawals when it is taken away, even if only for 30 minutes.  We are in the process of slowly weaning off of it but it's not an overnight thing)

The school had the principal, social worker, counselor, and assistant principal in there dealing with Benjamin.  It was decided to keep him in the conference room for lunch and recess and attempt to get some things organized and such before trying him back in the classroom this afternoon.  We are running out of options for Benjamin, and I know the conversations that lie ahead.

The above is just the boys.
To top it all off one of our dear family friends has found out her cancer is back and is having surgery on Friday.  I will be there with them at the hospital.
I'm dealing with some depression and tons of grief as I struggle to make it thru the holiday.
The girls are busy as heck with it being the last week of school.  We have concerts and lessons and practice and parties and so many other events we are trying to keep up with.

I'm trying to stay focused, but it's slipping.
I miss my baby.  I miss one of my best friends.  I miss what life used to be.  I miss being happy.  I miss the smile on his face and the old soul look in his eyes.  I miss the medical community that was my family.  I miss feeling alive inside.  I miss me.

So here I sit waiting for my boys to come home in 45 minutes, unsure exactly how I will deal with them.  Bob and I have decided that they will be told their grounding begin immediately and until he and I have a chance to sit down and talk we do not know how long it will go and what may be added to the electronic grounding.  I'm terrified to be the one to tell them this as I know it will send Benjamin into a tailspin.  Last night he lost his ipad time (30 minutes) and he screamed for over 2 hrs.  It's going to be a long night, and the cherry on top is Emily has her Christmas orchestra concert tonight!

Cheers to the holidays.  Get it done, get it over with, and get the heck out of here till next year; because I am sooo done!

Friday, December 6, 2013

Merry Christmas 2013

In light of the holiday season, finances and time we have made a video Christmas card! Enjoy!

Sunday, December 1, 2013

Birth and Death

The day Eli was born we found out that it wasn't just his kidneys that were affected and that there was ALOT more going on and that we had a sick little boy.

 On his 1st birthday we learned that his vision and hearing were severely affected and he failed his sleep study showing that he needed increased help breathing at night as well as day time.


On his 2nd birthday he was incredibly sick and we were fighting for our lives to avoid a trach.  He was struggling deeply with secretions and breathing.



On his 3rd birthday palliative care joined Eli's team and the sicknesses were taking a toll.


On his 4th birthday we can only visit his grave as our baby is GONE.




I am unsure how many times over the course of the years that we were unsure if he would make it thru the night.  The words "quality of life" were mentioned more times than any mother should ever have to hear.  Progression was visible and measurable.   We lived in a hospital more than at home.

Yet my Tiny Hero thrived.  He was always up for the challenge.  He was so strong and such a fighter.  He didn't care what the doctors and experts thought or expected.  Eli carved his own path thru this disease, thru the world and thru our hearts.

Here I sit exactly 4 years later remembering in detail the day my tiny man was born, and remembering in the detail the day he died.  This shouldn't be.
There should be wrapping paper, bows, gift bags with tissue that he can easily rip open.  Giggles and laughter.  The kids singing happy birthday.  Cupcakes with frosting.  The nurses turning their heads as tiny drops of frosting is placed on his lips.  His little "cake" should be out with the "candles" lit up.  New toys for him to explore, a huge stacks of books for him to read.

We knew we needed to do something.  A bit to honor Eli and honestly a bit to keep us moving and not having to much down time for our minds to roam.

I have been participating with "I Run 4" and "I Run in Remembrance" Groups so we decided to head out for a walk in memory of Eli.  We decided that we wanted to do 4 miles since it's his 4th birthday.  All 6 of us headed out to the park, and walk we did. We ended up "donating" 28.2 miles total in honor of our little man.


Now I'm at the end of the day feeling completely spent and wondering now what.  Thanksgiving was tough.  Then I was immediately thrown into Eli's birthday.  And Christmas is right around the corner.  I feel drained and have nothing left to give.

My brain is struggling so much to wrap around the fact that he is GONE.  I never knew a birthday could feel this way.

I want to end with a quick thank you to our friends and family who have been checking in with us and letting us know how much you all care.  I apologize for not responding to each and everyone but please know that we as a family all read your comments and messages and emails!  They definitely warm our hearts!  Our little man was amazing and touched so many lives and we are so honored to have been his family.

R.I.P
Elias "Eli" Richard Tomkins
Our Tiny Hero
December 1, 2009 4:02pm
To
April 28, 2013 4:08am

Happy 4th Birthday My Beautiful Boy!!!
You are forever missed!