“Parent knows joys of brain-damaged child”
Published in the Editorial Section of The Indianapolis Star, March 23, 2005, just a few days before the death of Terri Schiavo.
I am the mother of a severely brain-damaged 2-year old child who was born with a birth defect. We received a prenatal diagnosis of his brain malformation and were told that he most likely would be stillborn. An ultrasound told the doctors about his brain malformation, but the ultrasound could never reveal to them that my son has an incredible will and determination to live. In his two years of life, he has been busy fulfilling the purpose for his life.
Although he will never talk or walk, he has touched the lives and hearts of countless people. He cannot sit up, hold his head up on his own, and cannot swallow well. He has a feeding tube placed through his abdominal wall into his stomach. He has a trach to keep his airway open.
There is a list a mile long of the things that this child will “never” be able to do; however, there are things that he does every day just by being himself. He is a teacher, minister, counselor, bridge builder, peacemaker and life changer.
He doesn’t have control over his hands, fingers, or extremities. He will never be able to tell me he loves me in the way that typical children can. He can simply look at me, and we can speak to each other with our eyes and our hearts. He is my son.
In reality, Terri Schiavo is healthier than he is. When I see her on video, I see my son. I am reminded on a daily basis that he is severely brain damaged, and I have faced that reality head on. As a mother, I feel helpless at times that I cannot advocate strongly or loudly enough for my child. As a parent, do you know how touching it is to seek help and have so many people at least attempt to help you? To have people of power attempt to go to the end of the Earth for your child?
Even if Schiavo’s parents aren’t successful in their fight, they know that even the president tried in every humanly way possible to help them. As a parent of a severely disabled child, I must remind myself day after day and hour after hour “Love never fails.”
Leslie Harley
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