I know all the neighbourhood firemen. I've been chased by security guards in an Israeli airport. I can sing a stirring rendition of The Farmer in the Dell, I know how to activate the siren from the front seat of an ambulance, and I can sign American Sign Language. I know my way around the Ottawa children's hospital like a pro, and I know every word of just about every Barney movie ever made. These may seem like really random experiences but there is in one common factor in each of them, and his name is Danny.
Danny is my little brother. He was born three years after me, and somehow I still remember being in the hospital waiting to see him for the first time. It wasn't long before we were back at the hospital though, when at 18 months Danny had his first seizure.
Danny was diagnosed with Dravet Syndrome, a very rare form of severe epilepsy which causes developmental delays. My parents didn't understand what it meant, and because of the rarity of the condition, the doctors didn't really know what it meant either. It was something that we were going to have to discover for ourselves and it was only over the years that we learned what it meant. And what it meant was that while Danny could speak he would always have difficulty doing so, while he could walk and run, it wasn't without a cute little waddle in his step, while he would eventually be able to write his name, he wouldn't be able to read. It also meant that Danny would have seizures, and lots of them, each of which would threaten his life. Most importantly though it meant that our lives would always be out of the ordinary, to say the very least.
We call him Danny Shevuvani - in Hebrew it means Danny the terror. Otherwise known as Danny 'el monstruo', but you can probably guess what that one means. It's funny how such a little devil can look like such an angel. And he absolutely looks like an angel, with his curly blond hair, chubby cheeks and big blue eyes; he could be a cherub. But if you look into his eyes you can see the troublemaker - they gleam with energy and mischief. And when he gets that look in his eye, you know something's about to go down. If you're near a public pay phone he's going to dart up and disconnect the call of whoever's talking, and then dart away just as fast, as you throw quarters at the shocked stranger standing at the booth and run away after him, yelling out an apology. If you're in a heavily guarded Israeli airport he is going to slip under the security partition and take off running with a frantic mother and sister following, only to be found taking peoples' luggage off of the luggage carousel. If you leave a library book by the pool (my school's copy of Harry Potter 5), a cell-phone by the bathtub (my dad's Nokia), a car with the keys still in the ignition (my Mom's Toyota)...
There's no question that Danny's quirks have enriched mine and my family's lives. He is the funniest, most audacious, and most affectionate person in my life, and everyone who knows him adores him. That's not to say though that everything with Danny is smooth sailing. The constant care for someone who is developmentally delayed is exhausting and extremely stressful. It takes both of my parents, me and our nanny to keep Danny occupied, healthy and safe, and we all still function under varying states of exhaustion.
It hurts my heart to see Danny have to suffer through the amount of medication he needs to take each day, the hospital visits, the consultations with the behaviour specialist, the constant switching of schools as administrators attempt to quantify his cognitive abilities. It hurt like hell when for a while he couldn't remember my name, or even now when he asks if I'm his friend and I have to explain that no, I'm more than that, I'm his sister, because he doesn't quite understand the distinction between family and friends. There is a moment of about three seconds, every time he has a seizure and his lips start to turn blue, when in a moment of pure terror I think my implorations to "breathe Danny, breathe" won't work and I will lose him. But, inevitably, after a few seconds he takes a rasping breath and my heart starts beating again.
There is no limit to the influence Danny has had on me. I've always been a little more serious than my friends and a lot more independent, a result of spending hours with my nose buried in books while my parents took care of my brother. I care deeply about people, often putting their interests before my own, and am fiercely protective of the people I love. Wanting to give back to the special needs community that has helped Danny so much, I got involved with different organizations that help kids with disabilities, from dance companies, to summer camps, to playing with my friend Gaby for a couple of hours every Sunday. My experiences have encouraged me to branch out into other areas of community service and even earned me a provincial award that I wasn't at all expecting. I decided that I wanted to encourage other teens to volunteer and so joined the Ontario Youth Volunteer Challenge committee in Ottawa. The next year I was asked to be Ottawa's Youth Representative on the provincial board, and am now helping to oversee a province-wide campaign with the government, aimed at helping students to get out and volunteer. I've had so many positive experiences volunteering that I've decided that I would like to engage in some form of social activism as a career, although I'm not yet sure what cause I will devote myself to and how.
When I was younger, there were definitely times when I wished that I was a little less serious, more like a regular kid than a young adult. But now I recognize that the conscientiousness Danny has given me makes me unique - not every teenager watches Gossip Girl and the news, subscribes to Vogue and The New Yorker, or hangs out with friends on Saturday and volunteers on Sunday. So although some angry Israeli security guards, a disgruntled school librarian and more than a few interrupted strangers might not have been thrilled with Danny's quirks, I thank my lucky stars that he's my brother, or rather that I got to be his sister.
Danny is my little brother. He was born three years after me, and somehow I still remember being in the hospital waiting to see him for the first time. It wasn't long before we were back at the hospital though, when at 18 months Danny had his first seizure.
Danny was diagnosed with Dravet Syndrome, a very rare form of severe epilepsy which causes developmental delays. My parents didn't understand what it meant, and because of the rarity of the condition, the doctors didn't really know what it meant either. It was something that we were going to have to discover for ourselves and it was only over the years that we learned what it meant. And what it meant was that while Danny could speak he would always have difficulty doing so, while he could walk and run, it wasn't without a cute little waddle in his step, while he would eventually be able to write his name, he wouldn't be able to read. It also meant that Danny would have seizures, and lots of them, each of which would threaten his life. Most importantly though it meant that our lives would always be out of the ordinary, to say the very least.
We call him Danny Shevuvani - in Hebrew it means Danny the terror. Otherwise known as Danny 'el monstruo', but you can probably guess what that one means. It's funny how such a little devil can look like such an angel. And he absolutely looks like an angel, with his curly blond hair, chubby cheeks and big blue eyes; he could be a cherub. But if you look into his eyes you can see the troublemaker - they gleam with energy and mischief. And when he gets that look in his eye, you know something's about to go down. If you're near a public pay phone he's going to dart up and disconnect the call of whoever's talking, and then dart away just as fast, as you throw quarters at the shocked stranger standing at the booth and run away after him, yelling out an apology. If you're in a heavily guarded Israeli airport he is going to slip under the security partition and take off running with a frantic mother and sister following, only to be found taking peoples' luggage off of the luggage carousel. If you leave a library book by the pool (my school's copy of Harry Potter 5), a cell-phone by the bathtub (my dad's Nokia), a car with the keys still in the ignition (my Mom's Toyota)...
There's no question that Danny's quirks have enriched mine and my family's lives. He is the funniest, most audacious, and most affectionate person in my life, and everyone who knows him adores him. That's not to say though that everything with Danny is smooth sailing. The constant care for someone who is developmentally delayed is exhausting and extremely stressful. It takes both of my parents, me and our nanny to keep Danny occupied, healthy and safe, and we all still function under varying states of exhaustion.
It hurts my heart to see Danny have to suffer through the amount of medication he needs to take each day, the hospital visits, the consultations with the behaviour specialist, the constant switching of schools as administrators attempt to quantify his cognitive abilities. It hurt like hell when for a while he couldn't remember my name, or even now when he asks if I'm his friend and I have to explain that no, I'm more than that, I'm his sister, because he doesn't quite understand the distinction between family and friends. There is a moment of about three seconds, every time he has a seizure and his lips start to turn blue, when in a moment of pure terror I think my implorations to "breathe Danny, breathe" won't work and I will lose him. But, inevitably, after a few seconds he takes a rasping breath and my heart starts beating again.
There is no limit to the influence Danny has had on me. I've always been a little more serious than my friends and a lot more independent, a result of spending hours with my nose buried in books while my parents took care of my brother. I care deeply about people, often putting their interests before my own, and am fiercely protective of the people I love. Wanting to give back to the special needs community that has helped Danny so much, I got involved with different organizations that help kids with disabilities, from dance companies, to summer camps, to playing with my friend Gaby for a couple of hours every Sunday. My experiences have encouraged me to branch out into other areas of community service and even earned me a provincial award that I wasn't at all expecting. I decided that I wanted to encourage other teens to volunteer and so joined the Ontario Youth Volunteer Challenge committee in Ottawa. The next year I was asked to be Ottawa's Youth Representative on the provincial board, and am now helping to oversee a province-wide campaign with the government, aimed at helping students to get out and volunteer. I've had so many positive experiences volunteering that I've decided that I would like to engage in some form of social activism as a career, although I'm not yet sure what cause I will devote myself to and how.
When I was younger, there were definitely times when I wished that I was a little less serious, more like a regular kid than a young adult. But now I recognize that the conscientiousness Danny has given me makes me unique - not every teenager watches Gossip Girl and the news, subscribes to Vogue and The New Yorker, or hangs out with friends on Saturday and volunteers on Sunday. So although some angry Israeli security guards, a disgruntled school librarian and more than a few interrupted strangers might not have been thrilled with Danny's quirks, I thank my lucky stars that he's my brother, or rather that I got to be his sister.