Story of Jillian Grace: July 2013

What is Anencephaly?

Anencephaly is a neural tube defect (a disorder involving incomplete development of the brain, spinal cord, and/or their protective coverings). The neural tube is a narrow sheath that folds and closes between the 3rd and 4th weeks of pregnancy to form the brain and spinal cord of the embryo. Anencephaly occurs when the "cephalic" or head end of the neural tube fails to close, resulting in the absence of a major portion of the brain, skull, and scalp. Infants with this disorder are born without both a forebrain (the front part of the brain) and a cerebrum (the thinking and coordinating area of the brain). The remaining brain tissue is often exposed--not covered by bone or skin. The infant is usually blind, deaf, unconscious, and unable to feel pain. Although some individuals with anencephaly may be born with a rudimentary brain stem, the lack of a functioning cerebrum permanently rules out the possibility of ever gaining consciousness. Reflex actions such as respiration (breathing) and responses to sound or touch may occur. The cause of anencephaly is unknown. There is no cure or standard treatment for anencephaly. The prognosis for individuals with anencephaly is extremely poor. If the infant is not stillborn, then he or she will usually die within a few hours or days after birth.

Courtesy of The National Institute
of Neurological Disorders and Stroke

I Will Carry You
There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?
People say that I am brave but I'm not
Truth is I'm barely hanging on
But there's a greater story
Written long before me
Because He loves you like this
So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One Who's chosen me
To carry you
Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to His voice
And He says...I've shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies, no more teary eyes
Who could love her like this?
I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the
One Who's chosen Me
To carry you

Daddy, please don't look so sad,
Mama please don't cry.
'Cause I am in the arms of Jesus
And He sings me lullabies.
Please, try not to question God,
Don't think He is unkind.
Don't think He sent me to you,
And then He changed his mind.
You see, I am a special child,
And I'm needed up above.
I'm the special gift you gave Him,
The product of your love.
I'll always be there with you,
And watch the sky at night:
Find the brightest star that's gleaming,
That's my halo's brilliant light.
You'll see me in the morning frost,
That mists your window pane.
That's me in the summer showers,
I'll be dancing in the rain.
When you feel a little breeze,
From a gentle wind that blows,That's me,
I'll be there, Planting a kiss on your nose.
When you see a child playing,
And your heart feels a little tug,
That's me, I'll be there,Giving your heart a hug.
So Daddy, please don't look so sad,
Mama don't you cry.
I'm in the arms of Jesus,
And He sings me lullabies.

Thursday, July 18, 2013

Happy Birthday Jillian!

Jillian's Big Sisters!!