Monday, December 3, 2012

speak life

but this young man
 has been through some seriously hard junk
 the last three months...
stuff we would never ever 
wish on anyone
not even our worst enemies...
through all of the 
drama and
This young man had the following report card:

GERMAN                                      A
ALGEBRA                                     A
LANGUAGE ARTS                          A+
SCIENCE                                        A-
GUIDANCE                                     A+
HEALTH                                        A+
WELLNESS                                     A+


Mike and I are so proud of our son.
Please pray for Aidan
This is such a difficult time for him
Please pray for us
This is a very difficult time for us

Each day...
there are moments that steal our heartbeat 
for what seems like eternity...
and our breath stops
we gasp for air
as it hits hard again
 a slow-motion stabbing in our guts...
the reality
our reality...
Calli is not here.
She is really not here.
It is an unfathomable thing...
Calli's body died.
Calli is in Heaven.

You all have moved on....
in your own ways...
thinking of her only sometimes...
pushing back the thoughts...
getting over it.
but each day,
this is our reality.
Not only that this is real
Calli is gone from our daily life,
but also....
We don't have our Fathers, 
Aidan does not have his Grandfathers
We don't have Mike's precious Mother, Linda, 
Aidan does not have his Grandmom

Please...when you think of us....
please pray for us..
For our everyday survival...
For God's healing and peace
For walls of protection around our son

We are so thankful
for those the Lord sends to us
as just the right moments
moments of despair
and desperation
He sends them
with scriptures
words of kindness
and words of humility and grace
words and songs of mercy and love
We are so thankful for those who have
encouraged us
continue to pray for us
and believe the best for our family...
in the midst of our mess

Then there are always
 those other "concerned people"
The Bible warned us....
we will be hated 
without cause
lied to
lied about
talked about
gnashed at
we will be persecuted
for righteousness sake
or they will put us before Pilot
or just for the heck of it...
because they think they know the truth
the law
but they are so lost themselves
trying to prove their RIGHTNESS
their goodness
their concern
by turning against us
digging their claws
and throwing dirt
on our already gaping wounds

Just as the they did to Jesus
His own Family betrayed him
so they will do to us
the Bible promises it

they say we are fake
 But Truly
this is what we really are:
open books
we are real
we are confused
we are traumatized
we are stressed
we have faults
we have sin
we don't know everything
we love God
we love our son
we need prayer
and help
and healing
We implore you....
when you think of us....
and thoughts come to you of us...
and they are not good thoughts...
but are bad....
and are evil...
and you are worrying....
if your words are full of gossip.....
if they are full of hate...
and malice....
and discord...
and division...
Take heed...
You will be accountable to God
for every single idle word you have spoken
You can bless us with your mouth 
and speak life
Or you can curse us with your mouth
and speak death

here is an awesome song
from TOBY MAC's new album
I hope you enjoy the song 
 "Speak Life"

Here are the lyrics:
Somedays life feels perfect
Other days it just ain’t workin
The good, the bad, the right, the wrong
And everything in between

Though it’s crazy, amazing
We can turn our hearts with the words we say
Mountains crumble with every syllable
Hope can live or die

So speak Life, speak Life
Through the deadest darkest night
Speak Life, Speak Life
When the sun won’t shine and you don’t know why
Look into the eyes of the brokenhearted
Watch them come alive as soon as you speak hope
You speak love, you speak...
You speak Life, You speak Life

Some days the tongue gets twisted
Other days my thoughts just fall apart
I do, I don’t, I will, I won’t
It’s like I’m drowning in the deep

Well it crazy to imagine
Words from our lips as the arms of compassion
Mountains crumble with every syllable
Hope can live or die

So speak Life, speak Life
Through the deadest darkest night
Speak Life, Speak Life
When the sun won’t shine and you don’t know why
Look into the eyes of the brokenhearted
Watch them come alive as soon as you speak hope
You speak love, you speak...
You speak Life, You speak Life

Lift your head a little higher
Spread the love like fire
Hope will fall like rain
When you speak life with the words you say

Raise your thoughts a little higher
Use your words to inspire
Trouble falls like rain
When you speak life with the things you say

Lift your head a little higher
Spread the love like fire
Hope will fall like rain
When you speak life with the words you say

So speak Life, speak Life
Through the deadest darkest night
Speak Life, Speak Life
When the sun won’t shine and you don’t know why
Look into the eyes of the brokenhearted
Watch them come alive as soon as you speak hope
You speak love, you speak...
You speak Life, You speak Life

Tuesday, November 20, 2012

There is no pit too deep....

This is one of those weeks...
where all seems against us.
where looking forward hurts
as much as looking back

where time stands still
and silent
and we are frozen...
but the world keeps moving
and holly jollying
and giving their thanks....
when we are still looking for a reason
to smile 

amidst all the tinsel
and twaddle,
the spending and glitzing and
and self-indulgent crap,
we are frozen
incapable of digesting it all...

we have unpredictable and random emotions

Little things set us off...

Like when I wore that nail polish...
that grayish-purple nail polish
Aidan was acting so mean 
and weird to me one day...
Finally he confessed-

it was all about the nail polish

he wanted to throw up just looking at it-
He cried as he said, 
"Mom, don't ever
wear that color again, 
I held her hand mom,
I held her hand."
That is when I realized...
that was the last color I painted 
on her long, beautiful fingers,
that was the color she was wearing 
when she died in my arms, 
and in his hands...

I can't handle walking through target,
all the tinsel and trim
I cry through the aisles
I can't watch the holiday films
or hear Christmas music
or even hear the piano play...

when I feel the cold December winds coming...
All I can think about is that
she LOVED winter, and snow
and Christmas 
and the smell of a real tree 
and the lights on the houses
the candy cane in her cocoa

eating snow
making presents.....
it all
 breaks my heart into 
a trillion pieces
all over again

Mike doesn't talk much
or express much,
but he broke down over an extra piece of chicken,
and he will start crying randomly,
and we don't know the trigger was,
but we know why.
there are so many triggers...

We are all raw over here
without a vital limb...

We are doubting, 
We are abnormally normal.
At least that is what the professionals are telling us
We have not lost our faith....
but doubts still come
Just as David said in the Psalms
 "My God, my God, why have you forsaken me? 
Why are you so far from saving me, 
so far from the words of my groaning?" (22:1). 
and like Job:   "Remember, O God, that my life is but a breath; 
my eyes will never see happiness again" (7:7). 
 Just as those saints of old,
who we read about...
and who we look to 
as our examples...
We see, that just as they were then...
we are now
Not denying God, or his power,
filled with both faith and terrible grief 
and sometimes doubt
we aren't functioning properly
and are hanging on by threads

people keep saying...
each day will get better
time heals all wounds...
but it seems...
that each day gets worse

No amount of work 
or crafts
or volunteering
or time together
will ever make us feel better about
Calli's body dying
and how horribly she suffered

Each day, it seems,
the very ones that are supposed
to wall around us as protection when we are hurting....
and help us heal
be a support for us...
are the very ones
that are
ignoring us
avoiding us
misunderstanding us
taking offense
stabbing us
talking about us
calling us names
Mike, Aidan and I...
right now...
we don't have much to give to each other...
let alone to anyone else...
So we apologize for not meeting your expectations
and for holding too high expectations
for you...

 We can't see past our emotions, 
We can't see past our great loss
We are blind
groping the walls
seeking light
the way out 
reaching and begging and pleading
for help
for salvation....
from this lot.

But God thought us worthy of this lot
so we bear it.

mind you...
we may not bear it silently as Jesus did....
we may bear it....
completely recklessly
and inappropriately
while screaming,
while silent,
pious or angry,
thrashing against it all....
or numbing our way through it all
but we will bear it
we have no choice

God is faithful to do what He says He will do
 regardless of how we feel 
or how we act
or what we believe 
or what we doubt....

but it sure doesn't help
when we don't see
or feel
or hear....
It feels very very lonely
It is very very lonely 
It feels like rejection
like punishment
like the wilderness...

Sometimes we get a glimmer of God,
when He sends someone...
when He calls out to them...
and they answer Him with a 
"Yes, Lord- I am willing."

He has called out to many
but few answer His call
few answer THIS CALL-
He sends that still small voice to their heart and says...
"I want you to call them and just listen-
they may never pick up the phone.
Stop by their house-
they may close the door.
Send a note-
you may never get a response.
Call them again-
pat them on the back
hug them
even if they resist hugging you back
 don't take it personal
this is not about you
this is about Me
text them a song, or a poem
send them a picture
write them a memory
let them know you miss her too
talk about Calli 
and Matt 
and Linda-
even if it makes you uncomfortable
pray for them...
read scripture over their family
really pray for them 
Stop telling them what to do
just listen.
I am calling you
They need you
Are you willing?
They have NOTHING to give you back.  
They will drain you, 
....but I want you to help them....
are you willing?  
You will never get praise
or rewards on this side of Heaven
No one will know you are helping them
but Me."

 This week...When you are all giving your thanks, 
and Watching a Charlie Brown Thanksgiving,
and Carving your bird...

please remember a young man
named Aidan,
who is only 13,
and has been traumatized so deeply 
by the loss of his beloved sister, 
Grandfather, Grandmother 
and the callous and careless wounds and words 
of the very people he is supposed to lean on and trust.
Please pray for him.

And Pray for Mike, 
that God shows him how 
to lead and care for 
his wounded family
while he himself
is so broken and needs
to be cared for too

And Pray for me,
That I find a reason  to sing again
and that I can love my Aidan,
and My Mike,
As they need me to love them
and that I can forgive those
that have wounded us

Please pray for the peace
of our home

 This week, I needed to hear the Lord
I prayed and prayed
and I don't believe in ghosts, 
but I believe the Lord lets me hear Calli sometimes, speaking to me
telling me things...
I heard Calli saying to me...
"Mommy, put on my playlist."
Her playlist.
Her radiation playlist...
This playlist she made for herself to listen to during
one of the hardest trails of her life.
the hour and a half of brain and spine radiation.
 this music
brought her through.
I inherited all of her music, 
her cds
her playlists
her journals....
here is one of those songs...

 Beautiful Mercy
by Laura Hackett

There is no pit too deep
that Jesus cannot reach
there is no sorrow so strong
that will overtake his beloved one
No pit too deep
That Jesus cannot reach
There is no sorrow so strong
That will overtake his beloved one

And He's brought me to the wilderness
Where I will learn to sing
And He lets me know my barrenness
So I will learn to lean
Yes He's brought me to this wilderness
Where I will learn to sing
And He lets me know my barrenness
So I will learn to lean

He's so kind
Oh beautiful mercy
Do what you have to do
Jealous Lover
Do what you have to do (You know the best way)

Beautiful Mercy
Do what you have to do
Jealous Lover
Do what you have to do

You've brought me to the wilderness
Where I will learn to sing
And You've let me know my barrenness
So I will learn to lean

So I will sing
Yes I will sing, I will sing
Even in the brokenness
I will sing
Even in this loneliness

If you are interested- here is her playlist- I know she added more songs after radiation, but this is her original list-






























GREAT RIVER ROAD(from jacob's ladder album)-





Friday, October 26, 2012

swiss cheese

 this day...
I laughed really hard at Mike 
after the Oral Surgeon 
pulled his wisdom teeth out...
Did you ever see the video
David after the dentist?
It was kinda like that-
Except he wasn't being very nice :)
this day I sighed......
as Aidan went off to school
Public school
For the first time in his life

 Thankfully, his first day, 
happened to be the same day 
that Mike was having his teeth pulled, 
so, we both were able to 
drive him to school
 the poor dogs wondered 
where he was all day
they were waiting for him 
to get off of the bus

 He greeted them 
they greeted him
life was good
until ....
he realized I had the camera :)
Put the camera away!
(said in a super growly voice)

oh my :(
I don't like puberty
or teen angst
or talk-backers
or angry eyebrows
not one bit.

I have had several people
inform me that 
I must be doing a good job
as a parent ....
if my son is telling me
that he hates me.

I don't like this period of life right now
not one bit.
I was never like that....
Was I Ma?
 And according to his mother,
Mike D. was a perfect angel ...
until he met me:)
poor guy got corrupted
who are those rebellious teens? 
Oh my
We still have matching rolls:)
they are just much larger now....
 Well...I guess Aidan does not hate me that much....
since I found this secret message
written on the mailbox

darkness in the sky
the sun awakening the day...
the morning dew leftovers...
waiting for the bus
 love for his family
 (that includes me!)
just bubbles out of him
and onto the mailbox :)
I have been crying quite a bit lately
the other day,
I actually pulled a muscle laughing

I have been all alone
I needed to talk to my dad one day...
I wanted him to tell me what I was good at
and bad at
and what I should do with my life
I wanted him to give me
 those directions and advice
He was always so good at giving....
but never following....
I felt so lost
so I went for a drive....
I just wanted to sit and talk with my Daddy
like we used to do
before all the mess..
well.... within the mess..
we were a mess
but there were 
a lot of good times
in the midst of it all
before he died...
our relationship had evolved
it was simple for us...
we talked,
we shared a meal
we laughed
we cried
we sighed
I know that going to someones grave...
I am not going to see them
They are not there...
well their spirit is not there...
and a lot of people have their opinions 
and doctrines and theories
about "visiting" graves
and ya know what...
I don't give a hoot about what they think...

Losing my dad was horrible....
we just started to live
we just started to heal
we just started to really love 
and understand one another
and be friends...

I wanted to see him grow old
and I wanted him to see Aidan and Calli grow
and I wanted to have more time
I feel robbed...

so on this day,
I went to talk to God, 
and my Dad, 
and I told my Daddy...
how mad I was at him
for leaving me
for being a genius
for being so stupid 
how much I really really
needed him
how very sad I was
that he was not around
for most of my life....
How I really wanted him to stay
and I told him that...
but he was dead.

Did I ever tell him when he was alive....
how very very much I needed him
how very very much I wanted to hear his Jewish jokes
and hear him sing more
and how all that mess was terrible 
but somewhat normalish....

As I sat at that grave,
 4 hawks flew above me
I only was able to capture one at a time
they were perching 
and flying
and screeching at me
have you ever seen 4 hawks together?

in some way..
I felt like God sent those 4 hawks to me
to remind me...
that My dad
Mike's dad,
 Mike's mom
our precious daughter, Calli
are with Him
and they are free
and they are soaring
and it comforted me
I got a call last week...
Calli's headstone came.
I drove over right away
and it was raining...
Each month
on the 4th
When I lay out flowers
over her whole grave...
It is always raining
I love the rain
This day.....
something groaned inside of me
I realized how deep
how wide
how monstrous
the cavern inside of me was
people come....
and they leave feathers
and flowers
and pine cones
and ribbons
and their love...
that makes me feel better
to know you are thinking of her too
that I am not alone
in my missing her...
Do you miss her?
Why don't you ever talk about her?
I guess for me,
It is hard to let go of her physical body
I know her spirit is in heaven,
I know she is happy with Jesus
and my dad
and Linda and Mark,
but still...

As a mother, who birthed and nursed my baby...
and watched her grow into 
the vivacious and strong little girl she was
and watched as she
 blossomed into the poised and 
powerful flower of a young woman that she was...
and watched as she faded
but never let go 
of her dignity
and courage...
and beauty....
As her mother,
It is hard to let go of her body
her physical self...
My spirit knows the truth 
her spirit is
very much alive in Heaven...
but my brain
is a very hard obstacle to get over

my brain reminds me
that my Calli's body
 is under the ground
in a box
covered in dirt
and I feel guilty
and mad
and a pain literally 
shoots through my heart
and into the pit of my soul
 So I go
and I bring her flowers....
and I talk to the sky
and it rains
and somehow
 I don't feel as guilty
for leaving her body there...
for walking away from it...

Please don't tell me that
 she is happy and in Heaven

I do know that
and I believe that.... 
Please don't remind me that
she would want me to be happy
It does not really help at all.

If you are a Christian, 
Please stop telling me that Christians 
are not supposed to mourn and grieve
for the death of another Christian
Because I do fiercely...
and I am Christian.

Please stop telling me that
 If I visit my child's grave...
 I cannot possibly have faith

Jesus is the author and finisher of my faith
He's given to me the amount of faith
He thinks I should have...
As I study His word, He gives me more...

When you speak these words...
your words...
your interpretations...
when you say things like....

""She was not healed, because she lacked faith, "
"you lacked faith, "
"you did not believe enough, "
"she sinned, "
"you sinned..."
"It was His will for her to die,"
 "It was not His will for her to die..."
"He's got a plan for a Hope and a future..."
"You are selfish for mourning..."
"You are having a pity party... "
"You should only mourn for the right reasons and 
her going to Heaven is not one of them..."
"Faith removes your self-pity- you need more faith"
"You are not fit for the Kingdom of God, if you mourn for her death"
"God cannot use you if you are depressed..."

When you say these things....
you are building walls so high 
so thick
all around me...
just like Babel

and you discourage me
and you confuse me
and then I feel lost
and alone
and utterly 
utterly like....
Swiss cheese

there are holes
all throughout me....

people told me to get a job,
go to school
don't be alone
keep busy..

So, I got a job
at my old office...
and I was really good at it
and felt good doing it
for about a day...
It just hit me
and I  kept crying
and I failed miserable at faking it
and then I could not handle going back....
Thank God for a loving and understanding boss
who is giving me all the time I need
and calling to check up on me :)

I am taking a pottery class,
and I am making things with my hands
and it feels good

I am going to paint my sister's bedroom
and maybe help a dear friend
choose the colors of her heart
for her beautiful home....

I was a mom.
I loved my job.
I loved every second
I was priveledged to spend
with Calli and Aidan.
Now they are gone...
She is in Heaven
and he is at school
and I am still a mom...
but I don't feel like it anymore...

So, I am embracing my grief
whole-heartedly feeling
every square mm of it.
I can't shove it away
it just pummels its way out of me
at all the wrong moments
I cry at the grocery store
at the doctor's
at the coffee shop
and everywhere...
and that is ok.
If you ask how I am
I'll tell you I am terrible
I can't hide it
I don't like masks
I'll tell every soul
I know about
My Calli

the depths of despair
 are not too far for God to reach me....
He is with me always...
Even in the valley...
Even in the shadow of death....

This is my time to grieve and mourn 
and cry and lay in bed all day some days
and go out and be normal and laugh other days...
There is a time to mourn
and a time to dance....

Wednesday, October 10, 2012

CHOP's Four Seasons Parkway Run & Walk

 I really wanted to include butterflies....
they represent so much to me....
So I made hair clips and pins :)
Every single girl had a butterfly in her hair, 
and every single guy had a butterfly on his shirt

 get ready
 get set

Calli was smiling down on her Daddy
He really needed it 
We all need the sunshine

We are so proud of team Ordinary Oddballs
They raised over $3500 for Children's Hospital of Philadelphia's Cancer Center.

The sun was shining down on us....
It was a very difficult day...
Very emotional and just a few days shy of 
3 months since our sweet  Calli went to Heaven.
The people who came to walk, or run, 
the people who donated 
in the love and memory of Calli, 
showed us again, how much they love and support, 
not just us, but this cause, these children.

Mike, Aidan and I are very proud of the team and and we want to say
Thank You 
Glenda Leatherman, Ben Leatherman, Trey Leatherman, Levi Leatherman,  Lucianna Alderfer, Erin Rasnake, Timothy Court, Lori Derstine, Amanda Derstine, Alyssa Derstine, Chase, Sheila Schiedel, Julie Carter, Doc Carter, Alison Dittmar, Joseph Dittmar, Sandy McDermott, Ellen Nulf, Laura Kozdra,  Barbara Smith, Daniel Smith, Tom Pace, Rachel Smith, Jennifer Ghazanfari, Shannon Horbonis, Dominick Feralio,  Lorina Hunsberger, Travis Hunsberger,  Mysel Gomez-Landis, Mickey Gomez, Elijah Landis, Elanah Landis, Elicean Landis, Belyse Landis, Melanie Anders, Bernadette Denolf,  and Alison Seiler.

Later that day, we went to see the Dead Sea Scrolls 
at The Franklin Institute
  I cried a lot
I am not sure what it was...
maybe the fact that the very words of God from over 2000 years ago, 
were staring at me

Maybe it was the woman who asked me
 who they were writing about 
in one of the psalms on display...
I thought she was joking...
she did not know..
that when they were saying
 "You formed the earth.."
 they were talking about God.
we talked for a bit
and she asked...
if .maybe she should start reading the Bible
I put my hand on her shoulder...
and told her it was worth it...

and then I cried...

The next room I entered, 
I heard the most angelic voices singing in Hebrew
 I don't know what they were singing...
but it moved me deeply
it was a balm to my heart...

After the Franklin Institute,
We had a memorial service to go to at CHOP
remembering and honoring 
the life of the children 
who had died since January
There were too many.....

It was our first time back at CHOP
since the last time....
the last time I took my Calli through those doors...
the last time she came in smiling
and she left silently fading....
somewhere between this world and Heaven....

I was ok, until there were no spots left in the parking garage
and I had to keep going down
down to  B level parking

that was our level

I parked as far away as I possibly could...
from our regular handicapped spot.
as I walked past it
I stood still
for a moment
lost in the empty spot.
I closed my eyes
and I saw her there....
I miss getting her in and out of the car- 
I miss those wonderful and hearty 
bonus hugs that I got every day
as God gave me the strength
to lift her in and out 
of her wheelchair 
going up to the elevators, 
Aidan said, "I have this hospital memorized..."
and he does
 As we traveled down the halls 
and past the Oncology unit,
memories flooded my mind
I saw her walking, 
I saw her wheeling
I saw her in hospital beds
and MRI machines
I saw her getting poked and drugged
I saw her puking and laughing
I saw her crying and coloring...
and becoming unrecognizable
but becoming 
the most fragrant and beautiful
Then we passed the window...
the last window my daughter looked out of 
before her life faded.
This was the room...
where she last spoke to me
where for the last time I would ever hear her say
This was the last place she hugged me
the last place I watched my sweet love
try to live...
and eat..
and drink...
and talk to me....
and the last place
her big beautiful plushy lips 
kissed me back...
This was the last time I heard her voice
saying "I want Daddy."
 This was the place ...
where she tried so hard
and gave me her last smile
This was the last place she spoke.
the last words she said...
"Take me home, I just want to go home."
 The she faded away.... 
 What I would not give
to go back to that last day
and tell her so much more than I did...
so much more...
in those last moments...
tell her how proud I am to be her mom
How I never regretted having her
how my life with her
has meant more than anything 
how she "got" me more than anyone
she loved me more than anyone
How her life...
the years spent with her
were the best years of my life.
I would have held her longer
kissed her more
stroked her hair and twirled it on my finger
Freezing time....
As we walked down the main stairs,
and past the cafeteria and bathrooms,
many more memories flooded my mind...
my heart...
my soul ached....

As we approached the Auditorium, 
and turned the corner
I saw her...

I believe it hit us all
at the same time
like a ton of bricks...
 in the depths of our stomachs

In the midst of many faces, 
I saw only one 

There was my sweet Calli's picture
on display for all to see...
Candles all around her face...
Butterfly balloons above

My child was dead. 

The rest of the day was a blur
I think that day...
a flood of epic proportions 
was released
out of me

The tears gushed
from the bowels of my soul

The service....
It was poetry
It was music
It was stories,
It was names and pictures...
too too many names...

Each person who took part
playing a bongo, or a violin, 
a cello, or keyboard
a person singing,
calling their names...
Each person was a doctor, or a nurse, 
a custodian, or hospital worker, 
our beloved music and art therapists 
all took part honoring our child,
It was personal.

One of the doctors read this...
"I know Your names"
author unknown

I know your names
You were here for hours
Too young to die

Too young to leave your parents
Who will never be the same
Your names are written
In their lives forever

They will remember your birthdays, with
"If only" and "Would have beens"
They will count each year
And measure you by your friends 
They will mourn your graduations...
Ball games...

They will hold you in their dreams
They will cradle your teddies
And sleep with your blankets
They will yearn for the scent of you...
Long gone from your clothes

They will walk into your darkened rooms 
And hope that tonight ....
You will be there
They fear they may forget your face...
Your smile...
Your voice...

They will hold onto the grief that 
Binds their love to you
They will remember the insidious unknowns
That stole your breath
stopped your beating heart

They will relive your last days...
Last touches...
Last breaths...
And rewind them again and again until
They are tight in their mind's eyes

I weep for your mother's
Your Father's
Your Siblings,
Your Grandparents, 
Your friends,
And all those who 
Will never know you

And when time 
Silences the voice of solace
I will say your name
And remember
At the end of the service...
My mom and sister gasped in unbelief 
as the musicians started strumming the chords....
And they began to play the song...
the very song
Calli and I always danced to together
it was our song.
I shoved my face into Mikes arm
and I wept so thankfully
so bitterly
So longingly
for my Calli Mae... 

It was a message...from my sweets...