Wednesday, September 30, 2009

Enough Love for Itty bitty By:uncle Frank

my fairy princess

my daughter is a fairy princess,complete with ribbon &lace
filled with god's mercy&his grace
Shes smart&sweet
and as lovely as she can be
I love her more than i can say
more&more which each passing day
She is a princess on a mission
with a battle thats in remission
shes fighting against cancer
as we wait along the side line for an answer
what is God's will?what is is that he may see?
Is this the way he wants her life to be?
Thats why he gave her the heart she holds
made more precious than the rarest Golds
He gave her more Grace than you or I
All of his Love sent from the heavenly sky
He gave me fairy little princess for me to love
he sent her to me from the great heavens above
He knows her will
he wants me to just keep still
let him write her journey of where he wants her to be
does he want her with him or will she stay with me
See the Lord is a writer just as Iam
he writes every detail from the petals to the stem
He writes our journies in his book of life
he knows her pain cuts me open like a knife
My fairy princess has such a fight
it all just doesnt seem right!
(SIGH)she will be fine,she will get through
Shes got lots of prayers and loveing people too
who want her to win her fight against her disease
and to have us all finnally be at ease
My fairy little princess sent from above
sent to me for all of GOD'S LOVE

A adjective
1 grievous, heartbreaking, heartrending

causing or marked by grief or anguish; "a grievous loss"; "a grievous cry"; "her sigh was heartbreaking"; "the heartrending words of Rabin's granddaughter"

everytime Nevaeh has another treatment,or spinal tap or anything else that causes her to screan&cry it breaks my heart in2.Her pain is so unnesesary,she should be playing outside with her brothers!not in the hospital crying cuase they are going to poke her.Its all so crazy to me still.I just want to take her &run!My daughters pain and suffering is my heart being ripped out.I want to cry with her,but i cant....I got to be strong...let her see me she can be strong.Its all so hard!Im still wondering why sometines,i still think could they be wrong,i still wish to wake up from this dream,someone pinch me please!IS this how all the moms feel? is this what we all go through?Friday is a long appointment day.I am so dreading it,but we have to do it.(SIGH)i wish u could understand my heart

Tuesday, September 29, 2009

comfort in God's arms

Today I looked into the skies
visializing the Lord's aiding eyes
my heart surely ached
but I knew it was no mistake
He will have her in his arms
keeping her safe from all harms
I know she is well
this much for sure I can tell
One day you will see our precious Jenna Belle
All her adventures she will surely tell
Til then know that she will wait
til you oneday enter that pearly gate
Let your heart heal,with that trust
And the Lord knows your heart just
Dont forget to tell him your heart
cause he knows it all from the start


GRACE is a strong word
Given to me only by the LORD
waking up in the early day
seems harder then i can say
thinking of the future planned
hurts more then i can dare to stand
knowing there are chances of no hope
is more pain then i can cope
I know those thoughts i have to let go
i see a dandiloin,make a wish &blow!
Wish for a peaceful heart,
Pray for grace from the start
Wishing i had no heart to break
praying to GOD my pain he'll take
He today has given me his GRACE
giving it to me in his own pace
just enough so i can inhale
watching my worries in an imaginary boat far way sail
Praying for this feeling to stay forever
wishing to have the sadness to return never
I see her smile
it makes my heart flutter,just a little while
i hear her laughter,and her giggles
and watch when i tickle her belly how she wiggles!
Today i have HOPE and PEACE
my uncertailty has finnally come to cease
I want to LIVE a new day
come each moment as it may

Princess Nevaeh

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Monday, September 28, 2009


Sometimes at night
when sleep seems like a losing fight.
I tap on the window pane
staring out through the rain.
up into the heavenly skies
wiping running tears from my eyes.
I say aloud unto the Lord
"Here me Jesus,here my every word.
Protect my daughter through this storm
let a hedge around her form.
Give her fight to beat this war
let her courage&grace through you soar.
Give me grace oh,Lord
give me something through your word.
Allow me strength,
to get beyond this place,
this place of sadness &uncertainess
the place where in your arms i can rest
I know that its all in your hands
I see ur footsteps in the sands."
There are those days when i feel like i just cant breathe
those are the days i continuously get down on my knees
and fight through the tears,
and undeniable fears;
And thank him for all his love
and all his mercy sent from above!
"Thank you Oh,LORD for all you do
all my pain you already knew
I give it all to you my LORD
as you fight my battles with your mighty sword!
Thank you...
in Jesus name


life is often oblivious to our joys and fears
it cares not about our heartaches &tears
it worries not of what we want out of it
or how sometimes the obstacles it brings makes us want to quit
i wonder what life expects of us too
does it expect me to be like you
my heart break each&every day
i don't always know exactly what to feel or say
i have hopes&joys
a beautiful daughter &3 precious boys
a spouse that loves me with all my many afault
my progress always seems to come to a hault
nothing goes as planned
it feels as though Ive fallen in quicksand
the more i reach towards the Lord
the more i yearn for his word
the more i feel as though my world goes upside down
my hopes and progress seem to sink and drown
i am so very blessed
i should not feel so stressed
but the flesh takes over and i am in a daze
a daze that is such a craze
that i cannot control my tears
i cannot forget all my heartrending fears
so much runs through my mind
a glimpse of his grace i cannot find
it all seems so dreadfully far
it leaves everything so bizarre
life makes its own unbalanced turns
without a thought or any concerns
so i try with all my heart
to give it all to him so i can keep from falling apart
so i can stay sane,and let him have my pain
cancer is a word life throws at you and expects you to duck
but in reality it feels like your heart has been run over by a truck
it feels like you cannot breath
like a person overdosing on chrystal meth!
what a weird thought to run through my head,that's something i should not have said
but these are my thoughts and what gives me fright
these are things that blurs my sight!
i want it all to go away
i want my old life before the cancer, to comeback&stay
life has always brought me hurdles to jump
but this is just a huge never ending bump
This is my heart today,tomorrow is a new hopeful day
maybe in this new day i will see light
i will pray for this with all my might
i yearn for his peace and his grace
i want to get to that mountain and stay in that place
in heaven this life i will not own
i will no longer be made of flesh and bone
my heart will no longer ache
this pain i will no longer have to take
that day my children will have no sickness and no pain
it will stop this never ending rain
this storm that lives over my head
that makes me want to hide in my bed
i can see over the cloud sunshine wanting to peek through
wanting to tell me ther is hope it is all true
i hope you dont misunderstand me here
this is all in a day that i let in fear
somedays are nice and fair
i have not a worry or a scare
those days i find peace and hope
i feel then i can swim afloat
i pray for those days to last
and the bad ones to hurry and pass
one day this will be over and done
and i will always seen the gistening sun

Sunday, September 27, 2009

good days

Nevaeh has been haveing some awesome days here latey.Everything is seeming almost normal on some moments.Its hard to be 100%relieved because we know at any time things can change.Its kinda wierd because her hair is growing and im thinking HUH?I thought it was suppose to be falling out.but it still is falling out.Its very very its growing you can see her scalp.LOL!She looks like a baby monkey with her hair like that!ITS ADORABLE!!Fili(MY HUBBY) wanted to shave it for her so it wouldnt look too bad but she said no,she wants to leave it like that.So its gonna stay like that til shes ready to cut it.Today my dear friend Fran(shes my single person support group!)LOL! gave me a book written by a little boy named mattie.Its called Journey through heartsongs.There is a poem that he wrote that I just loved.Here it goes i hope you enjoy it as much as i did.
Do you know what angels wear?they wear
Angel-halos and Angel-wings,and Angel-dresses and Angel-shirts under them,and Angel underwear and Angel-shoes and Angel-socks,and on their heads They wear
Angel-hair-Except if they dont have any hair.
Some children and grown-ups don't have any hair because they HAve to take medicine that makes it fall out.And sometimes,the medicine makes them all better.And sometimes the medicine doesn't make them all better,and they die.And they don't have any Angel-hair.So do you know what God does then?
He gives them an Angel-wig.And thats what Angels wear.

Ive learned something through this journey we are traveling God gives our children such grace,a grace that we can never understand.I pray daily for the grace he gives me and sometimes I still feel like my heart is overflowing with pain,like i will never fully catch my breathe,like if i blink tears will explode from my soul out of my eyes.My daughter has the innocent grace that i yern for,she shows me that God will supply hope,grace and mercy..

Friday, September 25, 2009

Last-night I sat outside starring into the heavenly skies,
when coming out of the darkness i see with my squinting eyes
a tiny beautiful bird
i could not say even a single word...
she took away my breath with her glorious light,
she was an angel, i knew with all my might!
She sang a song so pure&sweet
as she landed by me&at my feet..
her beauty&song brought tears to my eyes,
I wondered why she would leave the heavenly skies.
She brought to me such PEACE& HOPE,
I knew right then i had reason to cope!
I had hope for what the future brings,
I knew all this as the little bird sings..
She told me about a garden I should create,
i knew this i had to do it just could not wait!
a garden made with HOPE&LOVE,
shared with my little bird sent from the heavens above...

i wrote this the 1st month of nevaeh's treatment

I woke up this morning missing her face,missing my life before we got to this place.
missing all the thing about her that make her smile
the smile that makes everything worthwhile.
Im missing the sparkle in her eye
the one that makes all your frustrations say good bye.
Some days are harder to cope, it will all be the same soon...i hope.
her days are better than before,
I am grateful for his open door
but somedays are harder than others
I guess its a pain that is understandable by all mothers.
Its silly to ponder on the rough here and now
these bad thoughts i should not allow
Shes doing better than she could
she's actually doing pretty good!!
I sometimes wonder how she may feel
with all the confustion in her ordeal
if i could stop her pain...
if i could stop the unstoppable rain..
i would take it all away
and make her good moments stay
she's in God's precious hands
i give it to him,he has his plans
Only he can make it all better
So I vent all my confusion in this letter

2 girls with a battle to beat!

my daughter has a fight,
that she will attempt to conquier with all her might.
its a fight that with her life she will have to pay,
its a fight that keeps us to continuously pray.
SO far so good,
God kept his promise like he said he would!
some days are good,some are bad,
some are just too overwhelmly sad.
i cant let her see me weak,
or have anything sad to speak.
she sees her mommy strong,
she doesnt always seem to know something is wrong.
she doesnt know her life is at steak,
she doesnt know everyday my heart continues to break!
it seems all so unfair ,
so much more anguish than i can bear.
im always on the verge of tears,
so many overwhelming fears.
so much that scares my heart ,
only God keeps me from just falling apart.
She seems so strong in her fight,
she plans her future without a fright.
she wants to be a hockey player and a physician,
she is a little girl on a mission!
she wants to be a ballet dancer,
but first she wants to beat this cancer!
She cant wait for her next birthday
she counts the days til the 2nd of May!
I wish i could be like her and not worry what tomorrow may bring
I leave it up to our father the king.
I have faith in his word
I give it all to God,our LORD!
My daughter is a warrior of this disease
she will beat it,it will be a breeze!
Dont forger my daughter's fight,
help us pray for her every single night.
let her know shes on your mind,
thank you for your words and prayers so kind.
remember her on the days of good and the days of bad
remember even the good days can be so sad

being grateful

SOmetimes the world can seem so dark&grey
often it seems like you really dont want to hear what someone has to say
you feel disappointed in the way your life seems to be
You feel "why oh why is this happening to me!"
On those days that this is true
Know that there will come a day anew
when you will see a ray of light
shining just before your sight
God doesnt want your hear to have pain
he wants you to see the light beyond the rain
He wants you to know he knows your heart
hes known it all right from the start
Noone else can ever understand your hearts strain
noone else goes down the same lane
its never the same what people endure
every pain is diffrent but always pure
I know somedays its too dark to see the illuminating light in the skies
Its hard to see beyond the haze in your eyes
But just know it is there!
there is a God in the calm air
He will give you grace&help you get beyond this dreery place
He will give you hope &give you the strength to once again cope.


Sometimes I fear i will never see light
beyond the the darkness i see a ray shining oh so bright.
Its a ray of sunshine beyond the gray
starting off a brand new day
with a smile so sweet
brightens the day of everyone she may meet
her eyes so bright,love so strong
thinknig nothing could ever go wrong
she is my sunshine and my star
her laughter you can hear from afar
she knows not all that could go wrong
a spirit so innocent and so strong
i adore my sunshine that loves me so
Please Lord let this cancer go
Let her beat it with all her might
so her smile will continue to make the world shine bright!