One of my heroes is my 9 year-old son, Gabriel. Gabriel was born 11 weeks early along with his twin brother. Both were unable to breathe very long on their own and needed respiratory support in the neonatal intensive care unit. Gabriel's brother recovered quickly and soon was home with his family. But Gabriel's airway was damaged by the ventilator and perhaps also suffered from a difficult to diagnose congenital defect. Gabriel spent the first five months of his life in the hospital.
Those were tough times, but Gabriel was already showing his character. Though he received far less attention than a baby should, he quickly became his nurses' favorite. And, every time I was able to visit him - perhaps an hour each day - he always greeted me with a big smile. I have a great picture of a surprise visit to him during late December. My colleagues and I were on a business trip to downtown Boston where he was staying and we all popped in on him. I held him up next to me and he looked at the camera and smiled as a colleague took a great picture of us.
Gabriel was eventually able to come home. He came home with a tracheotomy and damaged airway which prevented speech and created a situation in which he needed careful supervision. His critical airway meant that dislodging or occlusion of the tracheotomy would be life-threatening.
Over his nine years of life, Gabriel has faced dozens of surgeries and a few scary accidents. But, he has never lost his strong will to live life to the fullest, he has never lost his positive attitude about his health or his optimism that he will one day be cured.
Gabriel has adapted well and without complaint to various periods of being able to speak or not. Until he was five, he used sign language and then a small computerized device to communicate. If he couldn't use the device or didn't know a sign, he would make it up.
One time, Gabriel wanted fruit "roll-ups" but didn't know the sign. So, he rolled on the kitchen floor and hopped up quickly and showed the sign for "up."
Recently, Gabriel had a major surgical procedure fail and he actually went from being able to speak to losing that ability. It was very hard on all of us. I can remember barely having the emotional strength to tell Gabriel in the hospital that he would be getting the tracheotomy back and would not be able to speak for some time. As I told him and wept, he began to weep as well, but I believe it was more out of compassion for me. He grabbed me and hugged me and told me not to cry.
Gabriel is my son. He has a lot to learn and I must continue to parent and teach him. But, in many ways, I have a lot to learn from him about strength and optimism in the face of adversity. He has faced threats to quality of life and life itself with joy and resolve. Gabriel is my hero.
Submitted by Anonymous
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