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Una publicación sobre discapacidades visuales, y sordera y ceguera, para familias y profesionales.

Fall 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By Dorothy C. Lewis, Conroe, TX

Abstract: A proud grandmother describes her grandson’s adjustment to sudden blindness. He is very involved with family life, friends, and his community.

Keywords: blind, grandparenting, disability, brain tumor, growth hormone, sports

Case is my 5-year-old grandson who has been blind since he was 2 1/2 years old. Tragedy struck in the form of a baseball-size brain tumor shortly after Thanksgiving 2006. On November 26, he had emergency surgery to release the fluid around his brain. Then on December 1, a 16-hour operation was performed at Texas Children’s Hospital. The craniopharyngioma (a brain tumor that grows in the area of the pituitary gland and the optic nerves) was removed piece by piece as was the pituitary gland, which had grown over the top of the tumor. Because the tumor was so large, it stretched the optic nerves to his eyes, and he was blind. After three surgeries to release fluid that was leaking from the bur hole, a fourth operation was necessary to insert a shunt to drain the fluid into the stomach area. The good news was he did not have cancer. The bad news was he would have to take 8 pills and a human growth hormone every day for life, and it could grow back.

So far we have been very fortunate. He has two MRIs yearly and blood tests every three months. The pills and shots are extremely expensive. His mother is a single mother who is a flight attendant. She is his rock and support. Case sees an endocrinologist, hematologist, neuro-pediatric ophthalmologist, brain surgeon, and a pediatrician, as well as numerous technicians. This is the background on my amazing grandson.

For the first year after his surgery, he would ask, “Why is it so dark, Mom?” Now he will say, “Did you see that, Mom?” He doesn’t seem to realize he is blind. Case attends a small school in Weimar, Texas. The principal and teachers love him, as do the students. I cannot say enough about his school or any of the personnel, including the janitor, counselors, kitchen staff, and secretary of the school. In their own way, they each have helped this little boy.

Case has participated in Track and Field Day with his class and earned a first place ribbon in the races. On relay day, everyone was chanting his name. When they were asked for silence so Case could hear the bells, no one uttered a sound in the gym.

Case ’s teacher invited Case to partici pate in T-ball for Weimar. He was a member of the Angels. He would feel the ball on the T and then hit it. No one hit it for him. To run the bases, he listened for the beeper ball to guide him from base to base. He did not like to make an out, but loved to score a run.

Case does other things as well. He loves his dogs, Cowboy and Jack, and his cat, Hondo. Most dogs sense this little boy is special and protect him. He has a big brother, Tim. They wrestle and play. His cousins will play with him as well. Case loves to ride his 4-wheeler. His mother calls out commands to him, and he responds to her directions.

Case has also ridden the mechanical bull at the Houston and Columbus rodeos. Of course his dad or mother is usually beside him in case he falls. He wants to do mouton busting at the Colorado County rodeo. He loves to go to the ranch to fish and ride the tractor with Papaw, Uncle Donald, Uncle B.W., or whoever will oblige him. He also works puzzles, is learning Braille, helps me in the kitchen, likes to build things with his blocks, and repair things with his tools.

Recently we went to Cabo San Lucas. Case loves the people at the resort and the people there also love him. He never meets a stranger. Personality plus is my grandson. He charms everyone he meets. Make a Wish Foundation sent him and his family to a Kenny Chesney concert. Chesney autographed his cowboy hat.

He loves to wear his jeans, cowboy boots and shirt, and his hat. He will help brush Tim’s show heifers. He also likes to ride horses and is learning to swim this summer.

Case is a strong believer in Christ. His prayers will bring tears to your eyes. He prays for all the sick children, the soldiers overseas in Iraq and Afghanistan, each one of his relatives who are sick or dying and even the devil. He can recite the Lord’s Prayer by memory. He has a little friend who has leukemia and was in Texas Children’s Hospital, and he prays for her daily. She passed away recently and Case went to her funeral.

As a mother and grandmother I want to acknowledge this little boy for his accomplishments. Last weekend I was at a conference for parents with children who have disabilities. I realize how fortunate we are with Case, but he has done so much on his own by being very, very brave and having a strong support group. For any disabled child, this is a must. He has a loving and caring big brother, and a very strong and beautiful mother who just happens to be my daughter.