Who is Ben?
Ben was, by all accounts, one of the finest young men you’d ever have the pleasure of meeting. I was so blessed to be Ben’s CES Care Provider for two weeks shy of one year. Ben had intractable epilepsy, and was wheelchair bound and nonvocal. When he was born, the doctors gave him six months, which he firmly blew out of the water. His next ceiling was 8-12 years, which he also surpassed. Despite his profound limitations, he had a way with people. From other kids at school to random people on the street his smiles lit up hearts and opened minds. He was an explorer, traveling everywhere from Poland and Vatican City, and all across the Rocky Mountains. He loved horseback riding and the zoo and even got to swim with dolphins and pet sting rays. Above all, he loved and had close relationships with his siblings, Mom, Step-Dad and Dad, and his friend Ethan who is also nonvocal.
Ben passed away on the 21st of February, 2014 at 14 years old. He was peaceful and surrounded by his caretakers and family. He was responsive and playful up until his last few hours, showing his unending strength and bravery even in the face of so much pain. He taught me more than any other person ever has. Ben was an inspiration to everybody around him, and will live on in our hearts and in heaven forever.
The weighted blanket made by myself and Ben’s siblings went with him everywhere, especially in the last months of his life, and provided him so much comfort. It helped him sleep, helped keep his pain levels down, and provided a dampener for sometimes overwhelming sensory input. We saw a tremendous difference in his ability to sleep through the night and recover from seizures.
For this reason, we were inspired to make more weighted blankets for other children and adults in memory of Ben and all he brought to our lives. Thank you, Ben. We love you always.