Growing Up with Gregory

Written by Jessica Hilfer on . Posted in Features

Being the sister of a brother with disabilities is not difficult, but having the correct attitude about the situation–– that is the real challenge.

Gregory, my brother, is without a doubt my hero.

Gregory was born three years before me, but many of his significant milestones took place simultaneously with mine. My parents told me that I was the first one to actually walk, and a few weeks later Gregory took his first real steps off the wall. I think our roles have definitely reversed; now he inspires me to be courageous and to take chances.

 

I do not remember when I made my first discovery that my brother was “different.” One of the hardest parts for me growing up was that he had this undiagnosed condition. We still don’t have a name for it. He has a physical condition called hydrocephalus, which basically means he has special shunts in his head that prevent swelling from fluid in his brain. In terms of his mental condition, though, we don’t know what he has: he is non-verbal, and we don’t know what he understands or doesn’t understand.

I never knew how to explain all of this to my friends when I was younger. If his condition had a name, then I could just say one sentence and people would understand. Now that I am an adult and can reflect on my childhood years, I feel grateful that his condition comes free of a diagnosis. I get to share about my brother with people by telling them about him as a human being; he’s not just another person with a generic condition.

Gregory doesn’t communicate with words. He makes many interesting noises, similar to the babbling of a baby. There are a few distinct babbles my family and I have heard repeatedly over the years, our favorite being “Ed is home.” Ed is my Dad, and Gregory is his biggest fan. He will follow my Dad around the house wherever he goes, even to the bathroom! Gregory is also a big jokester; he knows exactly what to do to push people’s buttons. He enjoys sliding on our dining room chairs across the room and sitting directly in front of the TV. He also knows how to change the channel, and has an advanced understanding of how our television operates. He also enjoys pulling my hair, as most big brothers enjoy doing. I like when he squeezes my hand and holds it up to his cheek. This is how he says, “I love you.”

He communicates in other ways, too. His favorite activity is anything and everything that involves the car. When he decides it’s a good time for a car ride he will put on his socks, shoes and coat all by himself. Then he finds my father’s coat and brings it to him, and does his best puppy-eyed face. I have a lot of memories of car rides with Gregory growing up. We always had our assigned seats: he sat behind the passenger seat and I sat behind the driver. My favorite part of road trips was sharing my pillow with Gregory when we were both tired. I would place my pillow in the middle of the two seats and rest my head halfway, leaving just enough space for his to fit. He would eventually put his head down too, and I would excitedly whisper to my parents to look at how adorable we were.

I remember “sneaking” into his bedroom when we were both younger. On Saturday and Sunday mornings, back when I did not sleep in, I used to climb over his gate (a safety precaution for when he woke up early) and just hang out with my big brother. I don’t even remember what we would do, but I felt pretty rebellious climbing over that gate.

A very special moment I will always remember is when we had a bar mitzvah for Gregory. On Friday night, the
rabbi of our shul led a small service and said a few remarks about Gregory. Gregory decided to sit right on the feet of Mrs. Goldscheider, the rabbi’s wife. She was not bothered at all; she was more than happy to let him sit and seemed to interpret this gesture as a huge honor. Rabbi Goldscheider zt”l and his wife were both on Team Gregory.

My attitude towards having a “special” brother was always positive. Learning to communicate without the power of speech is a very powerful lesson, and Gregory has taught many people how to connect without saying a single word. Patience is another skill that I had to develop very early on. I never felt that my needs were second-class. I naturally understood that Gregory had different needs than my own, and they needed to take priority at times. As I got older I learned to embrace his special ways and see potentially “embarrassing” situations through a humorous lens.

I feel very privileged that G-d chose me out of all people to be Gregory’s sister. I feel blessed that I have been given the opportunity to have such a meaningful relationship with such a righteous individual.

Jessica Hilfer grew up in North Bellmore, New York and is a graduate of the University of Maryland with a BA in psychology. She currently works as a Teaching Assistant at Shomrai Nursery, where she has been working since she graduated in May 2015. She enjoys learning Torah, reading Kol HaBirah from cover to cover and being the managing editor's roommate.