Aaron Philip is a 12 year old boy who was born prematurely at 7 months of age. He was so tiny that his mother had to cut the newborn pampers in half so they would fit him. When Aaron was a toddler, signs of his severe cerebral palsy emerged. Lydia Philip, his mother, recalls that Aaron’s left side was folded in, and his neck was down to his left shoulder, with his leg was pulled in.
Since Aaron’s birth, the Philip family lived on the beautiful island of Antigua. In 2004, when Aaron was 3, his parents made the very tough decision to live in different countries so that Aaron could receive more extensive medical care. Aaron and Lydia moved to New York and Aaron’s father, Petrone, and little brother, Aren, stayed behind in Antigua. When Lydia reached the end of her six month leave of absence from work, she returned to Antigua, switching places with Petrone.
Petrone left his very good job as a customs officer so his son could stay in New York and receive treatment and therapy for his cerebral palsy. Times were tough in New York, and in 2010, Aaron and his father had to move into a homeless shelter in Manhattan, where they lived until they were able to move to their Bronx home last year. Aren then joined his father and brother in the new apartment. Petrone works in a school cafeteria and recently earned his American citizenship.
As Aaron reflected on his family, he said, “My family are like a group of candles lighting a room. There are only three candles in the room, which light up the room partially. In order to fully illuminate the room, we need a fourth candle. That fourth candle is my mother.”
Despite his father’s diminished income, Aaron has been able to get the treatment and therapy he needs. He underwent double hip surgery that was paid for by state-subsidized insurance, and at his school, he is assisted by a paraprofessional and an occupational therapist, Debra Fisher, who has been working with Aaron for the last seven years.
Fisher first met Aaron when he was in kindergarten. On their first outing outside of school, Fisher escorted Aaron as he rode his wheelchair along a sidewalk on the Upper West Side. During the trip, Aaron blurted out, “Refinance. Bikini Bootcamp.” Fisher feared that Aaron might be mentally disabled. Seemingly out of nowhere, Aaron proclaimed, “Easy money, easy money.” It was then that Fisher realized that the five year old boy was reading the surrounding shop signs. Little Aaron had already taught himself how to read on his Leapster, an educational tablet.
Aaron and Fisher work in the Blue Sky Room, a space for therapy at Aaron’s school where Aaron does exercises to develop and improve his motor skills. Three times a week, Fisher works with Aaron on grasping, raking, and releasing small objects, training his muscles to function so that he can hold a pencil to write and draw like other students.
The well-known writer types with just one finger, swooshing it from key to key to compose the blog entitled “Aaronverse,” which is mixes childish enthusiasm with candor and the metaphors Aaron is continuously inventing. “When I read, the biggest moment pops up like a hologram in the sky, and I have a locker in my head, and I lock that image up,” he said. Fisher sometimes has to help Aaron with small things, such as his elbow getting trapped in the space between his lap desk and his wheelchair. “When I’m done, I just want to lie there for days to recover. I’m exhausted. And then my brain has to return to my body,” Aaron said, discussing his writing.
Part of what makes Aaron and his family’s apartment a home is Skype (an internet videoconferencing service), which is continuously on, revealing the other home in Antigua with the ramps and widened doors that were built to accommodate Aaron’s wheelchair. “On the western side of our house there is a beautiful view of the Caribbean Sea,” Aaron’s father said of the home he has not entered in seven years. “It’s a small inlet with a mangrove swamp. The most beautiful.”
Aaron’s mother walks through the Antigua home, on screen and off. She steps out of view to prepare a meal and do laundry. She comes back into view to help her two sons with homework. For Aaron, the Skype connection is not sufficient. “I wish that I was sleeping peacefully,” he wrote in an email. “I hear my bedroom window collapse into crystals. I look around abruptly, until I see feathers on the ground. Then I look up. It’s a lady with wings. It’s not just a lady. It’s my mother. She flew from Antigua. She shows me her visa. I automatically know the pain and suffering is gone.”
This past Monday, Aaron, now a seventh grader, was back in school, preparing his remarks about life with cerebral palsy and creating art about disability.
Indeed, among Tumblr’s endless collection of blogs, stories and illustrated quotations, is the touching and vivid blog written by Aaron. The intense and steadfast voice of the 12 year old boy in the Bronx caught the attention of Tumblr’s 27 year old CEO, David Karp. In June, Karp met with Aaron at the company’s office to discuss Aaron’s blog and his life with cerebral palsy.
As the meeting was about to come to an end, Karp asked Aaron if he enjoyed public speaking. Aaron answered, “No, not really,” and went on the share a story about how, during a school play, the children and teachers forgot to wheel him off the stage, and he was left there.
Nonetheless, Aaron agreed to address the entire staff of Tumblr and share his story.