Over time we have come to grieve less for the child we thought we would have and to celebrate more who Nathan is. He was born in 1981, long before WAGR.org existed. There was only our family, with a child that no one could explain or label. Nathan’s management in the early years could best be described a “putting out fires.” As he encountered one medical, behavioral, developmental issue after another we began the search for answers. Our goal was to be able to sustain his fragile health and to find supports that would allow him to reach his full potential, in a small rural community in east Tennessee. The challenge has been, predictably, enormous and the impact has been life-altering, not only for Nathan, but for his world.
We asked for an extended program for Nate to sustain his academic progress during the summer. The result, the first extended year program for children with special needs in our rural school district; a program that continues today. We asked that Nathan be bussed home from Tennessee School for the Blind every weekend, rather than every six weeks, to be with his family. The result, all children at Tennessee School for the Blind go home to their families every weekend. We asked that Nathan be accepted in a day program in our community after he graduated from TSB. The result, day programs began to accept children before their twenty-first birthday.
Now, we know the child we were given He is nearly forty years old. In his lifetime he has not known prejudice, hatred, greed, envy, regret. He has known the joy of living in the moment and anticipating the pleasure of every day. He is a unique person in all the world, one in a million, a child with WAGR, diagnosed at age twenty.
We know, too what this journey looks like. It is exhausting/exhilarating, heartwarming/heartbreaking. Nate has allowed us to know that unkindness, prejudice injustice of any kind is unacceptable and painful, and unbecoming to us as human beings. Nathan’s family has learned how to be resourceful, creative, flexible. We are profoundly and immeasurably changed because Nathan is the child we were given. He has allowed us to know the intrinsic worth of every life. Years after he was named, we discovered that Nathan means “gift from God.”
Terry and Helen Lane
International WAGR Syndrome Association
PO Box 2875
Montgomery Village, MD 20886