pain beyond words

pain beyond words

i can't do it anymore
i can't pretend i'm okay
someone has to fix this
take the pain away

i'm tired of pretending life is fulfilled
i'm tired of saying it was for a reason
i'm sick of the advice to move on
they don't know the pain we're in

prayer didn't help
or you would still be here
i prayed so many damn nights
all it brought me were these grieving tear

i have no baby to hold onto
no baby to try and take care of
how do i tell your brothers
that a picture is all they have to love

how can i tell them
that their wish wont come true
when they tell the teacher they want their brother
they still wont get back to you

how do i walk on in life
with heartbreak that cripples me
regrets that haunt me
and fear that is slowly killing me

how do i look at your face
of course only in picture to my eye
how do i look at that smile and know you're gone
and not want to just curl up and die

we fought so hard for you
from conception to your death day
how does a sweet little boy lose his chance
to live life and love every minute of it along the way

there's a god?
really? prove it to me
prove it to tyty
when he's in the ground lonely

life may go on tyty
the sun will rise unfortunately i know
but there will never be joy in this heart
and this head of mine will always hang low

people say oh life goes on
fight to stay afloat and fight on
spoken with hearts that have never been hurt
who have never lived without a child gone

i know they are trying to help
yes yes i know
but the anger doesn't change
and the pain only will grow

i reach out my hand
i reach so far for you
but you're gone tyty
denial hasn't gotten me through

i'm like your brothers
right now i'm mad you had to die
mad at the doctors the pa
the world and of course me myself and i

i'll probably regret all i write tonight
what else is new
who really cares
nothin i do will bring back you

that's all i need or all i care about
but now i know it wont be nothing i see
i've awaken from many dreams
none of them brought you back to me

i've tried to pretend i'm ok
pretend nothing is wrong
but i don't want to smile
never wanted to all along

you were cheated
nothing hurts a mommy more
than watching her babies hurt
what was all of that for

they say there's more to live for
but do they know it doesn't matter now
when i don't have you in my arms
i have to make them see somehow

i don't choose this pain
i can't fix it or stop it
all i can do is wear my fake smile
and hide from it

i hold your picture right now
i hope drew is holding you
there will never be comfort
until i again am holding you

In the eyes of Tyler/Angel baby in heaven/Sailing to no pain

In The Eyes Of Tyler (written before his passing)

I only have eyes for Mommy
she's the one who holds me tight
I only have eyes for Mommy
except when I'm on Daddy's chest at night

I only have eyes for Mommy
she makes me feel safe and sound
I only have eyes for Mommy
no matter the crowd that does surround

I only have eyes for Mommy
she keeps me fed and dry
I only have eyes for Mommy
who always knows the cure for my cry

I only have eyes for Mommy
she tells me it will be okay
I only have eyes for Mommy
please don't make me look away


Angel Baby In Heaven

Angel baby
skin so fair
are you peaceful
up there

Angel baby
heart so young
do you fall asleep
to angel songs sung

Angel baby
barely two years old
are there guiding wings
for you to hold

Angel baby
taken so soon
are you cradled
in the curve of the moon


Sailing To No Pain

Walk away with your chin up
show your well deserved pride
You're leaving the biggest footprints
even if our pain bleeds on the inside

Take with you all your dignity
you hung onto it for safe keeping
You're sailing away with self treasures
even if our hearts are weeping

Sail away with all your smiles
you didn't sacrifice your self worth
You're sailing away with all your beauty
even if we're suffering the greatest pain on earth

Take with you all your strength
it takes a mighty heart to float away
You're sailing away to the most beautiful place
even if to us it doesn't feel that way

I want my dance back

Just a post to blow off steam about the loss of tyty and drew. i can't bring myself to think enough to write and sadly its too much work today to do a memory. i know that sounds awful. i'm just feeling sorry for myself today. tyty and drew are in every move or thought i make or have. i miss you tyty. this house just isn't the same without you. never will be. never will be.

Could I have this dance~~Anne Murray
here i sit listening to the song that seems to have brought meaning to me right now. its how i feel right now. i danced to this song with joe last night (a very close friend) and as i downloaded it and listened. i know what she is saying now. yesterday when i was laying on his shoulder and i could just feel his breath on me. just the feeling of knowing there was something good at the moment going on, but when the dance was over it was a let down. the music stops you let go, and the pain is still swarming around you like a funnel cloud. losing what i have you never fully enjoy anything anymore. so when she says can i have this dance for the rest of my life. she is saying can i have this feeling of having something in my life forever, can i feel this warm and loved forever, can i have some feelings other than pain forever. basically give me the happiness i feel in this dance forever.
i wake up and all i see is another day full of pain. i dont look forward to anything. i dont enjoy anything. i can't bring myself to share anything with anybody. i dont want to go outside but i cant stand being inside. i'm bored but i dont want to commit to anything to do.i'm lost. so lost. everyone is on my butt move on, you have to get out and live, you arent a mother, you dont clean, you dont try, blah blah. ya know i dont and i know it but it doesnt change the fact i still dont and cant bring myself to do it.
today i dont even know if i miss them as much as i just know they aren't here and i'm not worth anything without them. numb maybe. i just sit here moping. i cant believe life has become this. what is there to look forward to when you find no joy in anything anymore. yeah i laugh, i cry, i feel, i get some amusement from tv but it never last past the last laugh.
drew and tyty were my dance.
the dance ends quickly and i stand alone on the dance floor
i wish that dance could of lasted forever

Nothing To Hold

This is a poem written by Resa,(my ma) Tyler's Nammy. I wanted to post this.

Nothing to hold

The room is dark, I lay awaiting the buzz,
it finally comes, I rise starting a new day
they keep coming even though
I don't feel the one before it complete

I walk through my routine the same everyday
you are always on my mind
something is missing
something is wrong

I smile as I meet people,
do they know?
can they see how I feel inside
do they see the pain that grows

someone tells a joke I laugh,
I eat, I exercise, I shop, I work.
I do what is expected
am I passing it off?

last night on a midnight stroll
I look to the heavens
many many stars
are these all Tylers that have left

do they have mommys that are left here
with nothing to hold
I search to find my Tyler star
how will I know

how I wish I could reach up
and grab him bring him back home
and place him where he belongs
in his mommys arms that have nothing to hold

Big Brother Dylan's Memory

He always looked up to Dylan. In more ways than one.

At the Mac House and one of my favorite pictures.

Dylan was always reading to Tyler hoping it would help him later when he was delayed.

This is Dylan's favorite picture. He loves this memory.

Tyler trying to play Dylan's game.
Showing little brother how to Etch-a-sketch
Dylan always wanted Tyler by him. ALWAYS
Dylan was so excited for Tyler to come. This has been especially hard on Dylan

It was so hard on the boys when the doctors said we had to be careful of their contact with Tyler.

This is Big brother Dylan. Dylan and Tyler were very, VERY, close. Tyler always looked up to Dylan, and was always trying to get his attention. Tyler's passing has been so hard on Dylan, they were both so proud of their little brother. It breaks Dylan's heart he lost his little brother, and it breaks my heart to see this. Here are Dylan's memories.

I like when Tyler watched me playing my video games. We would play Fairly odd parents in the hospital. We played all kinds of games at home. He liked watching me play. One time he erased my game when I went to get cookies. Mom didn't take it away she took a picture. (laughing)

I liked reading to him. He would always try to turn the pages before I was done reading. He laughed when I got mad. (laughing)

I remember on Christmas at home this year he got a weeble tree house and I was playing with him and mom was happy because I got him to laugh. The weeble fell down and it made him cry but mom says he probably forgot about that in the next few minutes. I hope he did.

I liked when he would dump his food on his high chair tray and then put it in his hair to make us laugh.

When we drove in the car he would throw toys down on the floor so mom would make me pick them up. He would always look at me when we drove somewhere.

He called me DD.

I'll never have another little brother. I want TyTy back.

Thank You For The Talk TyTy

Thank You For The Talk TyTy

There's nothing really to rhyme
nothing comes out right
I just want to talk to you
feel close to you tonight

Look at the picture
of your resting place
look how beautiful it is
just like your precious face

It's spring training for the Cubs
you were my baseball fan TyTy
Watching the innings roll by
will only bring tears to my eye

Daddy helped me make a wreath
with your singing baseball teddy bear
I hope you like it TyTy
I think it looks cute up there

Ruth and Nicole are coming to see us
your favorite nurses TyTy
I think my tears will fall that day
I hope they forgive my cry

Daddy bought me an angel
it sits where you used to
Mommy had trouble making dinner
because when I looked back there was no you

You used to sit by the toaster
put your medicine caps in there
You would play in all the tupperware
that were filled with supplies for your care

I would turn around to see alcohol pads
spread across the cookie sheet
You would smile with your hand to your mouth
I tried to yell but you were just too darn sweet

So now when I turn around
from stirring that nights meal
your picture lay in an angel's arms
just a small way to help me heal

The house is quiet now
my hands are steadily still
I try to keep moving
I just dont have the will

So many days I was tired
but you always needed me
It's what got me up to every day
now there's no reason that I see

I wake up with the sun
but I also wake up with the pain
The pain of knowing you're gone
and the pillow filled with tear stain

I would do anything
just to see you smile or even cry
Feel your rough feet
see your big beautiful eye

I want to see your eyes peeking at me
as you try to not go to sleep
I want to lay down knowing you'll be there when I wake
and I wont drown in constant weep

It hurts to know you lay in the ground
It hurts to know you will never be here
It hurts to know you suffered
for two long and painful year

It hurts to know your brothers hurt
It hurts to see you only in picture
It hurts to know you will never play
and what time you did the pain you did endure

It hurts to know we will never be whole
and pain may be all we are swarmed in
but most of all my baby boy
I miss you. TyTy, the person

We Want Our Brother Back

At the Mac House and one of my favorite pictures.
These two boys have made TyTy and their parents so very proud.


The day of Tyler's admit to the hospital for his transplant. Now... I wonder if we should of chosen not to do transplant.
This day Tyler went for his chemo and transplant, and the boys went to school
Dr. O said they could hold Tyler for the first time after his transplant.
They were so excited when she said they could.
The first day we were home from the hospital and Mac house after his transplant




The boys have been having a hard time, so I gave them both notebooks, and told them to write whatever they wanted, and not to worry about anyone looking at what they were thinking or writing. It was our secret. Last night they both came to me with the notebooks full. I asked what they wanted me to do with them. They asked me to read them. So today I read through the notebooks, there were some drawings to TyTy, some of video games, and then their writings had me crying all day today. It was a time that as a mother, I didn't know whether to crumble in pain, or be so proud of my boys for their courage, and love and hurt for their brother. So I sat down and wrote this poem from the journal entries they had written. Every thing in this poem is from their words, I just made them rhyme. I asked the boys if it was okay to write this, and then post it. They liked it and said I could. So with their permission I took their words and made them rhyme. Everything in this poem is from them and their heart. I'm proud of all three of my boys for the love they gave each other. Again, this is the greatest hurt. Not one of my children hurt, all three of them do. I wrote this, and as I read through this I'm so proud of how they loved each other, and no matter where they are, or how far apart they are, they will always be brothers. Dylan's memory will go up on Monday. He was having some trouble today, so I said he could have some time to think on it.


We Want Our Brother Back

We want TyTy back
we're mad god took him away
I only have one brother now
I want TyTy here to play

TyTy wasn't bad mommy
why did god make him give in
I had nightmares about devils
TyTy was good is TyTy in heaven?

We're tired and can't sleep
missing TyTy gives us hurt
the only time we can talk to him
is in the cold through dirt

We're mad at the doctors
they made me better but not TyTy
they made us lose our baby brother
they didn't fix him so he wouldn't die

He wont get to play in the pool
or see chicken little next Tuesday
when we play outside this summer
he wont be in the window looking at us play

Mommy and daddy said he would get better
we had to stay at grandma's and we would see
but now all we see is them crying all night
and now they just say lies to me

They say it will get better
we will find our way again
they say you are looking at us
from up in heaven

They tell us you are okay
they say they want you in no pain
but then when I sneak upstairs at night
mommy is crying in the same pain

They hold it in around us
they try to pretend they are strong
they dont see us looking
we know what they are saying is wrong

They dont feel better now
even if you have no pain in heaven
they want you here like us
they get mad at god for the pain they are in

Mommy says she made wrong choices
daddy says he was not home enough
Dylan says he should be the one in heaven
and I just try to stay tough

Dylan and I sit up all night
play video games like we used to
sometimes it is weird to look beside me
and not see you

We dont want to go to school
Brandon gets mad so easy
I think he feels left out
he was the only one healthy

TyTy I tried to ask god
if you could live and I would go
he never answered me back and when I asked why
daddy just hung his head low

Sometimes I want to go to heaven
so I can be with you
mommy says you want me here
I tell her that's not true

She tells me all this stuff
I know she dont believe her own word
I know she is trying to make me not hurt
so I pretend like she has been heard

We all hurt TyTy really bad
I dont think any of us know what to do
I wish we could go back in time
so we could still have you

All I have is Brandon
he's not a fun brother like you
all he wants to do is follow me around
at least I could run from you

I hate stupid doctors
mommy says I can't be mad they tried
I wonder if she believes that too
all them nights she has cried

Daddy yells alot now TyTy
he isn't the same
I never seen daddy cry
but now he does when he hears your name

We want you back TyTy
maybe if I make a wish it will come true
I will throw my quarter for gum in the fountain
and we will see god give us back you

Mommy and Daddy are mad about our grades
they say we need to do more work at school
we need to stop acting out
and follow more rule

It's hard with everything a mess
we want to play all day
helps us forget the pain
we all live with every day

TyTy is there really heaven?
I wish you could answer me
I want to know if mommy and daddy are right
and you can still play and see me

You were special TyTy
you were like no other
we are mad because we want back
our little brother

Our family is falling to pieces
Mommy says I'm the glue
but I don't think there is any fix to the family
when the biggest piece was you

Big Brother Brandon's Memory

Sharing his valentine suckers with TyTy
The first time Brandon held TyTy
The first and only time TyTy was in public. On his 2nd birthday at Godfathers in Iowa City


This is Brandon, Tylers Second big Brother. I let Brandon say what he wanted, and I just typed as he talked. Out of everything and everyone Tyler loved his big brothers the most. Brandon was so good with him. He took care of him like a second dad. Taking away things he could choke on. I remember one time he corrected me for sitting TyTy too close to a plastic bag. He said Mom that is a choking hazard. Whenever Tyler got sick, the boys knew what to do. Brandon would get the thermometer. Dylan would get the blood pressure machine and they would hook him up while I called or emailed Steve to let them know he had spiked. One time Tyler was so ill and I was trying to decide what to do, and Brandon says mom I will wipe up his puke you write Steve, he will know what to do. He would always help me with Central line changes, and in the last days before the last hospitalization it was Brandon who would wipe Tyler off when he puked and stooled, while I was on the phone with Dr. G. He would wipe him down and say it is ok baby. I think the part that hurts the most is that these three boys are separated. That is one thing I'm most proud of in this. Through all of this these three boys could of been jealous of each other, or get mad because of the attention one was getting but none of them did. These two wanted their brother to live and fight and they gave up so much. I'm proud of all three of my boys. Whether on earth or in heaven, I'm proud of the love they have for each other. Here are Brandon's Memories

I liked it when I got to hold TyTy for the first time when he was just born and we were at the hospital. He was really small and I got to kiss him on the head. I couldn't wait to get my baby brother home. I wanted to hold him all the time.

My most favorite memory of TyT, my most favoritedest memory is when we took him some place for the first time. He was in the hospital but we got to leave. It was his birthday to a pizza place. We never got to go into stores because there are germs that can hurt TyTy but on his birthday we went and ate pizza and he ate pizza. Babies cant eat pizza. TyTy did. TyTy was special. He gots lots of presents and he was really happy. We had fun.

Sometimes it feels like TyTy is punching my heart because it hurts really bad when I can't see him. Mom said when I grow up to be a big person my heart will only have a scar like when I wrecked my bike and you wont punch my heart so hard.

(Gets excited) One more memory. When you were acting like you were gonna puke (laughing) on Dylan to make him say EWWWW. You would make a BLAK sound and Dylan would say gross and you would laugh really hard. (Laughing) That was funny. Really funny TyTy

I hope you got my Valentine TyTy. Are you bouncing on the clouds?

Tina's Memory

This is Tina. A close friend of mine who talked me through many lonely days while Tyler was hospitalized, and at home safe in his germ free house. Here are Tina's Memories.

These are my most memorable moments of you Ty-Ty. My favorite is when your daddy would come home. You were always getting attention from someone in the family. You were on the blanket with your brothers, and you knew it was time for your dad to come home. You heard a noise, and you peeked out to the dining room. He didn't come in the door so you went back to playing. Pretty soon the door opened, and you started swinging your arms like a bird, and getting so excited, and you said Da Da Da Da. You flipped over onto your stomach, and scooted out there waiting for him to change clothes so he could hold you. This I will never forget. When your dad picked you up, You looked at your mom as if you were trying to make her jealous. You looked to see if she was looking, and then you laid your head down on your dad's shoulder.
I also remember a time when your mom was making toast for us and we found medicine caps and 9v batteries in the toaster. She said you would put them in there when you sat on the counter as she made your IV food.
People thought you were a baby because you were so small, but I seen these things happen all the time. You were a smart little kid inside who knew exactly what he was doing.
I have one more that I want to say. I hope this doesn't upset your mom. One day I came to drop off some things for your mom. I peeked in, and you and your mom were on the couch sleeping. You both looked so peaceful. When I took a closer look she had a tear coming down her face. I wiped it away for her, and stepped back, and realized she had fallen asleep staring at you. I found the camera, and took a picture for her. But even now when your mom is crying, and missing you, that is the picture that comes to my mind.
You are missed Tyler.

Tina

Just to feel better

Just to feel better

i'll do anything to feel better
pretend you are still here
i'm sick and you're with the nurses
no reason to shed grieving tear

take a sleeping pill
when my mind is asleep
it can't think of you
and drown in it's own weep

write a fantasy tale
the princess gets her white knight
spend hours writing the words
so i forget about your heavenly light

drink to the bottom of the vodka
i know mommy is bad
a little time to escape
the feelings of being mad

watch movie after movie
get swarmed in someone else's misery
forget you aren't in your crib sleeping
escape the fact you were taken from me

the world is a fogged haze
i can't find my way
you were my guiding light
the reason for my every day

i sit in a dark corner
if i don't live i don't see
all you could of been
all you were to be

i spend days in false positives
pretend i did all i could for you
reality slaps me in the face
and i know there was more i could do

hop from one place to another
moving takes up time i have to spare
the time i would of spent
on your needs, love, and care

hit the internet to shop
there's no money but i don't care
it helps the pain for an hour
helps me forget you're not there

turn off the phone
hide away in the newest escape
forget I've lost my baby boy
forget my heart's tattered scrape

go further in debt, sleep away a day
fall down the stairs tipsy, buy a new sweater
TYTY i will do just about anything
just to feel better

i miss you so much TYTY mommy misses you so much baby boy

Postcard To Heaven

Postcard to Heaven

A weekend in bed
filled with thoughts of you
the breath was taken from me
tears soaked their way through

All the choices we made
one change and you could be here
I could still see your smile
not your image in my shed tear

The pain only worsens by day
no matter the coping methods I try
the last two years of your pain haunt me
your blue lips and last breaths fill my eye

I guess the words are the same
but so is the undying pain
every step I take without you
leaves a cold and empty stain

I think I'm losing my mind TyTy
your dad came in the other day
I asked him to do your CVN
so I could catch up on sleep that day

He looked at me for awhile
then came to me with an embrace
only then did I realize
the tears running down my face

I did the dishes one day
your brothers were fighting, what's new
I spoke out loud "they are crazy aren't they TyTy"
I turned around to a high chair but no you

I've canceled three engagements
made a promise then was a no show
usually I feel bad or call and check in
I didn't care if I let them know

I curled up in bed this weekend
I held on to your huge winnie the pooh
the one you hugged on your last christmas
you seen it once before heaven took you

Brandon told me his heart hurt
and I think I told him a lie
I didn't mean to say it
but I hated to see him cry

I told him his broken heart was like an owie
it hurts real bad now but in time it will heal
And as he grows up it will only be a scar
it will only be the memories that he will feel

It seemed to help him that day
I don't think my lie will stand the test of time
I'm tired of watching all my boys hurt
and all I can do is sit here and rhyme

TyTy there is such a huge hole without you
I sit and will for you to reappear
but I know all I have left is your things
and our unrelenting tear

The words that used to help
no longer do
nothing is helping this pain
we carry without you

I can't think or sit still
all I want is to hold you
I beg for one last chance
to feel the life of you

We try to think of you in no pain
that's what we wanted all along
but we thought it meant alive and well
healthy and living strong

No child should die
to find peace or stop the pain they're in
God should have a healing touch
if he is so mighty in heaven

My words are redundant
I'm sure all who read do see
the words may repeat themselves
but the pain wont leave so easily

I go over and over in my head
every inch and curve in your body
Your rough little feet and chubby finger
the tiny little butt that used to amuse me

I can still see your big eyes
looking up over your bottle at me
fingers tangled in a blanket
knowing my lap is where you wanted to be

I'm trying TyTy
but I just can't move on
the pain is too heavy to walk with
and my steps just can't carry on

My tears fall endlessly
your name is on every one
I should be rocking you to sleep
or better yet you keeping me on the run

Every child of two
and they are everywhere
reminds me of all you could be
there is pain in my caught stare

i can't write anymore
tears are clouding my eye
life is so miserable without you
i miss you so much tyty

one more thing I'm sure you know
Kyle has joined the heavens too
show him the ropes my sweet angel
give any strength you can to his family too

i love you tyty
straighten your angel wing
i will live this life of misery
if peace and no pain for you it will bring