Friday, October 1, 2010

Heaven is the face of our little boy...

Heaven is the face of a little boy
With deep blue eyes
That shine so bight in the sky.
Heaven is the place
Where he calls my name
Says, “Daddy please come play with me for awhile.”

God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m aching for.
God, you know, I just can’t see beyond the door.
So right now...

Heaven is a half smile palsy kiss
And a thousand other little things I miss with him gone.
Heaven is the place where he takes my hand
And leads me to You,
And we both run into Your arms.

Oh God, I know, it’s so much more than I can dream.
It’s far beyond anything I can conceive.
So God, You know, I’m trusting You until I see
Heaven in the face of my little boy,
Heaven in the face of my little boy.

My spin of the “Heaven is the Face” by Steven Curtis Chapman


We had the honor of going to the "A Night with the Chapmans" concert; Steven Curtis Chapman, Mary Beth Chapman and Caleb (his sons band), last night. What a great but emotional night!! The music delved into our experience of Love and Lose and now adoption. I would encourage all to attend or check out Steven Curtis Chapman's new music, Mary Beth Chapman's new book, as well as the band Caleb!!

Here is a you tube video of "Heaven is the face" (mute our music player before playing this)




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