BDSRA Illuminator

Special Parent Feature

: I am Bill Milani's brother and I was hoping you could find a nice place on the website to put this piece I wrote this Easter week. I am looking for an appropriate publication to send it to, but meanwhile, I was hoping you could add it to your site.
Thank you very much.
Andy Milani
Courage and Sacrifice
This Easter, I was moved by another story of courage and sacrifice while listening to a religious sermon. This story happened in 1936, when a drawbridge operator took his young son to work with him. The father and son were enjoying a typical day, raising and lowering the bridge to let the boats pass. Later in the day, without warning, a passenger train appeared in the distance, speeding toward the open drawbridge. The man and his son raced down the catwalk to pull the lowering lever. With the train quickly approaching, the son slipped, getting his leg stuck in the drawbridge gears. Horrified, the man quickly realized that he could either save his son, or lower the drawbridge to keep the passenger train from plummeting into the river below. He could not do both. With what must have been tremendous anguish, the man pulled the lever to lower the bridge. He cried out in agony as he watched the train pass over the lifeless, mangled body of his son, caught in the gears below. The man had sacrificed his son's life so that 400 railway travelers, oblivious to his sacrifice, could live.
The sermon went on to draw the parallel that there is no greater act of courage and sacrifice than to give one's son so that others could live - just as God did when He sent His son to die, so that all of us might live. Not to lessen the acts of the many Medal of Honor recipients, but as a parent, I agree with the sermon -there is no greater act of sacrifice.
My inspiration for recognizing a moral in all of this is that there are parents all over the world who must muster the courage to watch as their children slowly succumb to a terrible disease. Late Infantile Batten Disease. Afflicted children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten Disease become blind, bedridden, and unable to communicate. Late Infantile Batten Disease is always fatal by the late teens or twenties. I cannot help but think that there isn't a Batten parent in this world who would not lay down their own life, if it meant that their child could live without Batten Disease. And these parents don't have a choice of whether or not to pull a lever.
Batten parents possess unbelievable courage and make huge sacrifices every day. Batten children require constant care and nurturing as the disease slowly attacks their bodies. Batten parents make significant adjustments to their lifestyles to provide their children the required care and nurturing. They provide that care and nurturing themselves. They know that no doctor, nurse, or anyone else can recognize when their child experiences the discomfort of a poorly positioned pillow; nor can they feel the joy from their child's stricken body when relieved of that discomfort. Nobody else can feel the love emanating from their child during a long, quiet embrace. No, nobody else can provide the mother's touch, the father's patience, the parent's love.
These parents sacrifice. They sacrifice the lives they've built and the dreams they've had, all the while knowing this terrible disease will eventually take their precious child away from them. They feel tinges of guilt when they take leave to enjoy a movie or dinner out, wanting in their hearts to be by their child's side. They feel anger at God when they see healthy, happy children, playing in the neighborhood. But because of their courage, they don't show it. If you want to see true love, for the Batten parent it is in the dictionary between courage and sacrifice.
My brother Bill is also a soldier - and he too knows about courage and sacrifice. He and his wife Cindy are Batten parents. They have two sons, Billy and Joey, who both have Batten Disease. For these parents, it takes twice the courage, twice the sacrifice.
Could it be, just as God sent His son to sacrifice for others, God sent Bill and Cindy to sacrifice for Billy and Joey? Surely, God anguishes over the lives of Bill and Cindy. These parents show unending acts of courage, love and sacrifice. I really believe that like the Pentagon, heaven, too, has a Hall of Heroes - and Bill and Cindy's names are already there - with a star.

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