A Special Needs Grandchild

Looking back, the first time I realized that I was needed was the day my daughter called me from Children’s Hospital in Birmingham, AL. 

She was crying and was terribly upset and she said, “My daughter is in critical condition and I am afraid she is going die.”
My granddaughter had already gone through a twelve-hour surgery where the doctors cut through the top of her head down to the base of her mouth to repair a  basal encephalocele and save the pituitary gland

Hubby drove me to Birmingham Children’s Hospital. 

I stayed the night sleeping in a straight back chair. 

My granddaughter seemed to be improving, so the next day I went home.   

The following Tuesday, my granddaughter took a turn for the worse.

She was leaking spinal fluid out her mouth, had two strokes and was in a coma. The doctors said that they would have to repair the leak, this would be her second surgery.

I stayed at the hospital with my daughter until my granddaughter stabilized which was about a week.

There were prayers going up everywhere by everyone we knew, for my little granddaughter to survive.

God answered those prayers. 

It was a long haul.

While she was struggling to survive in intensive care we tried to keep busy by taking long walks, going to the restaurant to eat.

We would go to the children’s harbor where my daughter got her haircut and I could work out on the exercise machines and where we also washed clothes.  

The Children’s Harbor was built for parents and their families to use while their children are staying for long periods of time in the hospital. 

We could only stay for short periods of time in the Intensive Care Unit and sometimes when they had to admit a child or one would die we would have to leave, and that was quite often. 

My granddaughter's condition looked critical from the day she was born and I did not want to get to close to her. 

I guess I was afraid of her dying, but I did want to remember her so I got out my camera and started taking pictures of her every time I saw her.

My granddaughter is an amazing little girl, a real fighter.  

She came through two difficult surgeries and came out with a different little girl. 

She was so frail and I was so afraid to touch, to feed, or even hold her. 

She gradually began to come back to us. 

Her smile slowly came back. 

The strokes left her paralyzed completely on the right side. The left side of the brain controls the right side of the body.
We later found out that she had zero blood flow to the left side of her brain.

We kept praying she would roll over, crawl or someday walk.
She could walk with the help of a walker but never on her own when she falls from a sitting position she cannot get herself up.
She depends totally on others to take care of her.