Saturday, January 19, 2008
Every year, usually in the summer, the Virginia statewide support group for families who have children with deafblindness comes together for a family retreat. It was during one of those retreats that I first met Chancellor.
Only two years old, Chancellor was a dervish of unbridled energy wrapped in a luminous smile. I remember thinking how good it was that he had young, lively parents who would be capable of keeping up with him. Chancellor never let his Usher's Syndrome slow him down. Usher's Syndrome is an inherited condition that results in deafness and a gradual loss of vision. But I knew from the first time I laid eyes on Chancellor, or Chan-Man as he was called, that even the Usher's would not keep him from experiencing all life had to offer.
As I watched Chancellor grow through the years, he gave me hope. As a new parent of a child with deafblindness, I was often overwhelmed with the impact of Ashley's disability. But Chancellor showed me that there really were no limits on anyone's life, even for a child with deafblindness. Each year at our family retreats, he seemed to grow more vibrant, more alive. I saw him advance from using an adaptive cane device to a regular white cane. I saw him adapt to his cochlear implant, and I saw his sign language skills improve drastically. I saw him grow from a small child who had feeding problems to a young boy who anticipated meal times. He loved school and each year he tackled harder and harder challenges. Little did we all know that his most difficult challenge was yet to come.
About a year ago, Chancellor started having seizures - significant seizures that exhausted him and took their toll on the skills he had fought so hard to master. His parents sought out the best doctors, the doctors who would help them help the Chan-Man. That search took them to a speciality hospital in Pennsylvania. The doctors at that speciality hospital recommended a radical surgical approach. Chancellor's parents had very little choice - his seizures were becoming much worse. So the decision was made. Chancellor would have surgery to separate the two hemispheres of his brain.
The many months after the surgery were filled with helping Chancellor re-learn everything - walking, talking, eating - everything. It was the most difficult challenge of his life, but he did it. By early November of 2007, Chancellor had regained all the skills he would need to go home, and he was not having seizures. He was scheduled to go home in time for Thanksgiving. But then the unimaginable happened.
Just two weeks before his trip home, two weeks before Thanksgiving, Chancellor started to regress again. He was losing skills, and didn't seem himself. Doctors discovered that a granuloma, a type of tumor, had grown on his brain stem. There were no options available for removing it. Chancellor was sent home, but certainly not to the homecoming that everyone had dreamed of for the past year.
On Friday, January 18th, the Chan-Man left his cochlear implant, his white cane, and all his pain behind. The angels escorted him to Heaven. He was only 10 years old. As his obituary states, "Chancellor held a flame that lit the lives of everyone he touched. Though brief in years, he had a greater impact on this world than most might hope to achieve in a full lifetime."
We're going to miss you, Chan-Man. We will never forget you, and we will always love you.