Sunday, July 13, 2008

Out of the Darkness

This is the promised piece about Ben, originally written for a ROCKO fundraiser.

We lost Ben for two years. I don’t mean lost so that we couldn’t find him. He was sitting right there in front of us. But the Ben we all knew and loved just seemed to disappear, to go somewhere deep inside himself where we couldn’t reach him. This bright little boy who loved to explore, play with toys, climb on anything and everything, call for attention, and do things for himself suddenly went away. No one is exactly sure what happened to cause this but we all immediately went to battle to bring him out of the dark place he had gone to. This wasn’t the first such battle fought for Ben. This miracle child was born extremely prematurely to a mother who couldn’t care for him. He weighed less than a pound, had multiple physical birth defects, and on top of all that, Down Syndrome. The doctors took one look at him and gave him up for lost. They put him on comfort care and waited for him to die. Two weeks later a nurse finally said, “I don’t think he read the chart.” Enter the woman who would become Ben’s Mom. The battle began. Surgeries, procedures, pneumonia, illnesses that should have killed him, nearly two years in the hospital; Ben conquered it all. He was eventually adopted by his remarkable family and joined his older sister, Leigh, who also has Down Syndrome, and his two older brothers. He learned to eat and to walk. He explored his world despite severe vision and hearing losses. He laughed and played and learned and thrived. When Ben came to us at our school, he was just beginning to use sign language to communicate and responding well to picture symbols. He would literally tear the room apart to explore and find out what was there. He was always escaping through the door to seek out a sunny window. He was gaining new skills at a phenomenal rate. Then one day he just stopped. He grew quiet and withdrawn. He started hurting himself. He would cry when asked to do anything. He was lost and didn’t know how to find his way back. We worked hard to give Ben what he needed: sensory experiences he found calming or engaging, love and attention, the expectation that he would get better and he would learn. We even tried medication. We fought the darkness for nearly two years. Then suddenly Ben started to wake up. He engaged in work and play tasks more willingly. He wanted to be included with groups and to spend time with his family rather than retreating to be by himself. He started communicating again and doing things for himself. He smiled more than he cried. In fact, the tears nearly dried up. He came out of the darkness a more mature Ben than the one we had known, with a teenager’s willfulness and stubbornness. He is more independent and interested in different things than when he was smaller. He doesn’t explore like he used to, but he is more willing to go new places and try new things. He now sits and laughs at things he finds funny for obscure reasons only he knows. He is extremely determined to get what he wants. He is affectionate in ways he never was before. He is stubborn and difficult and funny and brilliant and wonderful. He is our Ben, again, come out of the darkness and shining brighter than ever.

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