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...


  1. This is one of my favorite songs. I mean really! I even like the way Iz sings it so wrong & it sounds so right. The first time I heard it I was enthralled with it. And I had a friend who also loved it - so much so that it was part of her funeral service. She also died from cancer - a different kind. But in the end for Calli & Marian - it was the same.

    I haven't really known what to say - so I have been praying. And checking everyday to see if you were coming back. I imagined that the walk was both awful & wonderful at the same time. I think seeing the support that these people had for Calli & now for the cure. What an awful disease that takes loved ones away little by little until they are gone.

    BUT, we read the Book and we know the ending. For Calli death was a wonderful new beginning. For you, a sad one. BUT, we read the Book and we know the ending. How wonderful to have loved so much and been loved so much. How lonely it must be for you. BUT, you have read the book and you know the ending - and the beginning. I can't imagine your loss. It is greater than anything I have gone through. But I know your Hope and I know that you will stand victorious one day and you will hear "Well done".

    I have fallen in love with your family through this blog. And I thank you for sharing the most painful part of your life with me. Not quite a stranger - not quite a close friend. But you need to know that your writings are not only theraputic for you - there are many who are helped when they read. I said it right after Calli died - heaven only knows the people who came to know our Savior through Calli's struggle and your sharing it. I thank you for that.

    Blessings, Lois

  2. Oh my Lucy!! Dear, sweet Lucy, Mike and Aidan!!! I always look forward to reading your updates on your blogs, it's a good way to keep family and friends informed of how you are doing. I seem to always begin reading from the start with such interest and enthusiasm until about mid-way through to the end, the tears start flowing, EVERY TIME, and I need to stop and get a tissue so I can continue reading!!! I'm glad Tom was able to join you, Mike and Aidan on the walk. He really loves all of you very much, as do I. I remember the day of the walk, oh so very well. The sky was just so magnificantly beautiful. I couldn't help but think that it was a sign from Calli and all the other young, beautiful children who lost their lives and were being remembered and honored on that special day!! As always, my heart goes out to you. I loved the video of Somewhere Over the Rainbow, Yours and Calli's song...and as I was listening and again, crying profusely, my cockatoo, Ivory sat silently in her cage, watching me and at the end of the song, she said quietly and in her passive, little voice, "I Love You." Ivory can say many other words but those words just seemed so incredibly fitting at that very moment. I know how much Calli loved animals and for some reason, when my bird said those words to me, I closed my eyes and again, could feel Calli and Linda in the room. Just the thought of both of them...Calli loved animals, Linda, not so much, ha, but she knew that my cockatoo means the world to me, even though she's very spoiled :) So, thanks again for sharing and updating and opening your heart and soul to everyone who reads your beautiful blog of Calli's struggle, strengths and beauty...she'll always live on in our hearts...forever an angel. P.S. I LOVED the picture of you and Mike and the sun rays shining through his face....definitely Calli Love!!!

  3. My sweet family ~ thank you so much for including us in the CHOP walk, I will treasure my T-Shirt forever :*)
    The day was so beautiful to be sure! All those beloved children must have had a hand in that!
    Just like our shirts said, I miss Calli. We ALL miss Calli!

    This has been quite a year for our family- both sides hit hard/unexpectantly - and then Calli! The child who tied us all together...
    We weep. We all weep for our great losses.
    But we know, yes KNOW that they are all safely over the rainbow <3

    I first heard that song with Julie :)
    Then I put it on a cd for Joe <3
    Now I see it was your's and Calli's song too -wow. That IZ, he sure had a way of giving us hope, of telling us that its going to be okay.

    I know that you, Mike and Aidan are broken hearted.....
    but then I look at the sunshine on Michaels face! You saw it, you captured it on film! You said it yourself :)
    Yes, it is these little signs that show us we are
    not alone... the little bird that said "I love you" after the song ended was a message sent for you, the monarch that greets you everywhere, the heart shaped rocks found in unexpected places, the cloud that resembles an angel... she sends these to you with love. To comfort and show...
    To say, "Hey mama- don't have any regrets about me cause you were the best mom any girl could want... you were my sunshine, my wings, my rock when I was going through that covered bridge. You were the light that lit the darkness, you made me laugh!! I felt sooooo loved by you and daddy and aidan! You were the comforting whisper in my ear as I slept in your arms, you were my guards, my soldiers on the front line, you had my back. I am so glad I had you all! And mom, I wuv you just because you are my mom. God gave us to each other, don't forget that! xxoo"

    Yep, I believe Calli would say something like that :) No regrets, only love unending.

  4. I really believe this blog has been good for you. I check it every day. Just thinking about you again. My heart is so broken for you and Mike and Aidan :(

    I just pray that Jesus wraps his loving strong arms around each of you and brings you comfort like nobody else can <3 <3 <3


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