Five years before I arrived, my brother Nick was born and was later during a routine exam diagnosed with taxoplasmosis, which meant he had been born with holes in his brain. In a rare number of people including my brother, it impacted eye issues too.
My mom has always been an extremely strong woman; she was committed to raising her son to his fullest potential. Despite his diagnosis, they lived together and due to my mom’s unconditional love and support, they both began to undeniably thrive. When Nick turned five years old, I was born and we lived in Washington D.C. One afternoon while with a babysitter, Nick was riding his beloved Big Wheel bike near a construction site. There was no fence, and to the utter horror of the sitter, Nick rode his bike off a cliff, severely hitting his head. The sitter rushed Nick to the hospital but it was too late. The accident caused major paralysis.
After the accident, Nick had undergo multiple surgeries and he was incredibly brave. Later in life Nick would continue to have surgeries to help relieve the physical pain he continued to experience. The discomfort was so severe, painkillers were not enough. But when we were kids, my memories of Nick’s surgeries were vivid for me as his sibling. We were living in our townhouse and I felt a nauseating sense of anguish every time my mom would wake him up to take him to Children’s hospital for yet another surgery.
My mom’s strength during this time was the glue that kept us all from breaking. Around this time my stepfather John entered the picture. John raised me and Nick with my mom as if we were his own children. It was as if an angel arrived, providing my mom a committed life-partner and unconditional love to us both. Together, the four of us were a solid team. One of my most favorite first memories of that time was when John bought a plastic little blow-up pool. Nick and I were splashing around in it and suddenly Nick put a catfish in the pool! To say we were startled is an understatement. John also used to let us ride his tractor in the Shenandoah Valley, to our delight. Later on Nick even joined the Special Olympics team at St. John’s where he attended. John made sure we would all be there to support Nick as he ran and did shot put competitively. These are just a few examples of how our stepfather John brought so much excitement and happiness to our lives.
There was so much joy in our lives and Nick has always been the most amazing brother and was the light in our lives. I compare him to the character Olivia at the end of the movie Little Miss Sunshine who gets up on stage and begins to dance….no… rocks out, busting crazy moves, with her family surrounding her. She dances with a total command, an exuberant, even witty mastery of her body, the music, the moves, everything. Most of all, Olivia does it for herself, her own sense of fun. Anyone judging her becomes irrelevant.
The attitude of Olivia in the film embodies the disposition and spirit of my wonderful brother Nick. First of all, he is hilarious, and to this day protective of me. He has often told me, “I raised you.” Nick is filled with an extreme sense of joy, compassion and pure love for life. Although I have seen him feel sorry for himself on days when he is experiencing inevitable physical pain, he mainly has a fiercely independent attitude and extreme sense of self.
When I was in Middle School our family moved to Rhode Island so that Nick could attend the Maher Center in Newport. The school was phenomenal for him, and would not only serve as a safe place of education and support, but would ultimately mainstream Nick so that he would eventually at the age of twenty one be placed for a job at a shop specifically designed to staff people with special needs. Once he got a job, Nick then moved to an apartment near my mom.
These days, although Nick speaks with a strong impediment, my family, including our three kids, understand him perfectly. We don’t need a “Nick translator” but I appreciate why communicating with him for others can be hard. And although he is unable to read (it is cognitively impossible due to the taxoplasmosis), Nick has a high level of reasoning and is very soulful. He is smart, engaged, social and extremely funny. Nick still loves to compete in sports, and loves to play the Italian sport of Bocce. Nick also loves to watch TV and movies like the X-Men and the Incredible Hulk. It makes sense to me that he would love those shows, since they reflect the fact that strangers that see him might be taken aback by his different-looking appearance. But in fact, to me all I see is Nick my wonderful brother– a warm, wonderful, funny and caring person who gives out so much love and deserves the same.