Wednesday, October 8, 2008

Shine On Blue Eyes

You drifted into my life you blue eyed boy
My heart skipped a beat, then I was quiet.
So strong in your spirit with such a joy
You proved to us all that life is golden.
Unique and supple so soft to touch
An honor to hold, you and kiss you and such.
The greatest teacher I know laying in my arms
When the winds took a change and carried you home.
With all I am, is honored and blessed
To have held you at birth and held you at rest.
You are a piece of heaven God knew we would need.
To continue this life and sow new seed.
I was there through sickness, health, and death
You were the one who created in me the breath.
In my heart you live on, I see you in everything
To feel the wind on my face I know one day I will sing.
It’s ok to know that God called you home,
To help prepare a place for us, on the streets of Gold.
Around and around and around we go,
You are walking, talking, and singing with a glow.
This life has been touched by the strength you portrayed.
A picture, a tapestry, weaving away…..Shine On Blue Eyes!

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Lucas was born to us 5/10/07 and was soon diagnosed with CHARGE. CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and/or development, Genital and/or urinary abnormalities, and Ear abnormalities and deafness. Lucas's anomalies included with his case of CHARGE include minor heart defects of ASD and PDA, bilateral choanal atresia repaired at four days old, undescended testes repaired at seven months old, and ear abnormalities; also he has reflux and aspirated while feeding shortly after being born and thus had a G-tube and Nissen Fundoplication at five weeks old. Additionally he has PE tubes, very low muscle tone and facial palsy on his right side. Lucas was diagnosed with Primary Pulmonary Hypertension at 12 months old. He showed us how to shine through the rain as he lost his bravely fought battle and entered into Heaven on 10/02/08. He was our miracle on earth the 507 days we spent with him. For more information, visit chargesyndrome.org