Meeting Sophia and working with her family has inspired me in many ways. As a Chaplain of the Arts, poetry and other artistic expressions give me an avenue to provide support to families in crisis.I hope that through my poetry and the prayer flag project I can reach out in a personal and positive way and be a part of the integrative style of care that Sophia’s family has dedicated itself to.
—Robin Modlin

Visiting Sophia

Gently laying on the blue mesh sling
Cradling your frail tender body
A soft whisper of thin limbs
Large brown eyes welcoming a deep look within

Daddy so loving a tender moment
Touching hands
Minute fingers wrapping the firm
Hands which desperately seek to save you

Fred Astair dancing in the moonlight

Mommy's voice speaks for you
The energy of protectress
The strength of a lioness
Loving eyes of longing to hold you forever

On the TV there is a mermaid falling in love

A child's dreams
Your vulnerable life
Wrapped in a genetic dilemma
Brings tears to our eyes

Yet the heart is awakened
Through this brokenness
An odd mix of family life and hospice care
As tender breezes of understanding
Blow into the tragic sadness of your life together

Your Mommy and Daddy
Tasting the sweet, sweet love of you
Cradling your vulnerable body
Draped in the tired robe of sleeplessness
Knowing your spirit, your gift
Wearing the scent of hope everyday.

When visiting you Sophia
Your life
Adorned with shiny jewel like mirrors
Reflects
My life, my love, my hope.

Witness Sophia

Witnessing your young life
You cannot even move from your sling chair
Gentle arms carry you everywhere
Big brown eyes catch a glimpse of me
I wonder, what do you see?

Witnessing your young life
Many come to see you
Walking in the door and through
Small tender body sensing spiritual presence
People seen and unseen in their essence

Witnessing your young life
I sense that you are witnessing ours
As you have come with only too few hours
So much work to be done
You direct us as if the energy magically comes from the sun.

Witnessing your young life
It is as if we must
You call to us to act and to trust
Somehow we know
Your voice speaks in the early dawn, now go.

Witnessing your young life
A muse, a scientist’s dilemma, a fragile child
Your impact upon us all is anything but mild
It is clear that your work is great
For you have asked the whole world to participate.

Witnessing your young life
We must be quiet from the very start
Messages from the sling chair, gentle impressions upon the heart
It is you witnessing our lives and it is only fair
How do we ever know who really sits where?

Karen

You let me into your life
Your heart ripped open by Sophia
You share with great capacity

Your work is immense
Your work is unfathomable
Your work is precise
Your work is intense
Your work is the love from you broken heart

You pull back the curtains
A life filled with challenge
Weary
Angry
Fear
Hungry
Why

Sophia has come to you on the gentle breath
Of love
Of honesty
Of compassion
How can so much hurt
How can so much pain
How can so much weariness
Come with such a gentle whisper of a child

Because
She is truly of the great northern wind
She is truly of the great eastern sunrise
She is truly of the great southern heat
She is truly of the great western mystery
Disguised as a fleeting butterfly

It is time to be quiet
Listen to her teaching
Feel her caress
It is all you have wished for
And more
Great tears of grief will fall
Filling the ocean of the unknown
But Sophia's garden if tended with care
Will grow into wondrous blessings

Walk gently now Karen
Walk with beauty
Be gentle to yourself
Be gentle to those who love you
Live with forgiveness, the greatest healer
Let Sophia's teachings come into everyone's hearts
Let the cleansing rage of anger be washed away with the love she brings to you

Let your dreams
Illusions of the mind
Desires of the heart
Reveal their mysteries
In ways you can never know
Except through the heart

They Come So Briefly

They come so briefly
These delicate ones
Eyes filled with love and hope
Your heart is opened
By these little ones
Winged angels
Who briefly pass by

It is like a whisper
And finally only a memory
Of the ecstatic love
The opened heart
The eyes filled with love and hope
They come to you
Touching your cheek
With their little hands
Oh so gently

Briefly, briefly they come
Softly, softly they leave
These little children
Only here for a moment
A moment of Great Love

They are our teachers
These winged ones
We try to take off their wings
So they don’t get away
Stay, stay I will make you a room
Filled with pinks and blues, monkeys and bears
Soft toys and beautiful sounds
Stay, stay you touch me so
I can never let you go

You have come to me little one
You have come to me yet
You must leave
Oh so briefly
I can not bear it
I must touch you again
I can not bear it
I must hold you again
Take off your glistening wings
Live in this room of magical things

In my sorrow I let you go
In my sorrow I feel your touch
In my sorrow my heart has opened
In my sorrow my little one

You give me your wings
And for a brief moment I understand
You came here briefly for me
For me little one
My heart is open and within it
I hang up your gossamer wings

A gentle breeze flutters the feathers
A gentle touch on my heart
My life will never be the same
You will never leave me now little one
You will never leave me now little one
Always your downy white caress
Your eyes of love and hope
Always with me
Always with me