During my senior year of high school I was asked to present a research paper about my older sister's disability. Initially an assignment for our class only, I agreed to speak about the private lives of my sister, myself, and the rest of our family. I presented fourth on the day it was due and no one went after me. Across several health classes, phys-ed classes, the remainder of the family living/developing child classes, and even an honors biology class I was touted along to present again and again, and again. By the time that my teacher had decided I had finished my presentations I had spoken in front of 7 classes; approximately 182 people. There were students in the classes that cried, there were some that got up and tried to offer some sort of help, some people in the classes offered sympathy (as if she were dying), and one girl even asked if she could present the idea of a fundraiser to help...
That was never the goal of my teacher when she kindly asked me to switch my presentation topic from Borderline Personality Disorder to Angelman Syndrome. It wasn't my goal when I agreed. I accepted the suggestion because her logic was right-- How many people have heard of Angeman Syndrome? And on the off chance that tey had... How many could say they lived with it for almost 18 years? It seemed like an easy A+! I could give a first person account of daily life, as well as the science behind her disorder. It never in a million years occurred to me that standing up in that third period class and saying, "My older sister was born with a genetic mutation" would garnish peers who never even looked at me in 4 years, to approach me with tears in their eyes saying, "I'm so sorry, I didn't know. That must be so hard..."
My name is Andi, and my older sister, Gabrielle, has Angelman Syndrome.
Angelman Syndrome is a rare genetic disorder, effecting 1 in ~15,000 people across the general population. In 1965, Dr. Harry Angelman became the first physician to study the abnormality. He initially named it "Happy Puppet Syndrome" based on observation that all 3 children he met had a jerky movement (like puppets on strings) and were always happy. In 1987, Dr. Ellen Magenis discovered the genetic marker for the pattern of symptoms Dr. Harry had studied: a complete deletion of a maternal band (Q12) on the 15th chromosome; a mutation that happens during fetal development.
Some of the more common signs and behaviors of individuals with Angelman Syndrome (the name changed in 1982) include:
Hand flapping or walking with arms in the air
Jerky body movements (think of a marionette)
Stiff muscles
Little or no speech
Seizures
Feeding problems (such as sucking and swallowing)/Tongue thrusting
Sleep problems and a need for less sleep than their peers
Delays in motor development
Frequent laughter that may occur at inappropriate times
Excitable personality/ADHD
Strabismus (crossing of the eyes)
Microcephaly (small head size) with flatness in the back of the head
A lower jaw that juts out
Light pigmentation in the hair skin and eyes
Inability to produce sweat
When Gabbi was born she was a very happy child, there was no denying it. She met benchmark after benchmark (sitting up on her own, crawling, turning towards voices, and making eye contact)... Until one day, Gabbi stopped meeting the benchmarks; she never reached another benchmark. Shortly before I was born my mother can recall getting a phone call from her father and him frantically explaining that she needed to get home quick because he thought Gabrielle had a seizure. My parents rushed home and took her to the doctor, where shortly after she was diagnosed with epilepsy. Months went by and Gabbi's condition didn't get any better. In fact, it appeared her health had gotten worse. The seizures had increased and all of her movements became jerky; her arms flailed and she seemed to have trouble chewing food. Another trip determined another diagnosis: Cerebral Palsy. It was after this next diagnosis that my parents suddenly realized Gabbi never cried--there were never any tears-- even when she seemed upset. My parents continued to see doctors, knowing in their hearts that their daughter did not just have CP. One day, while sitting in a waiting room, my mother saw a woman dropping off resource pamphlets. My mother picked one up and found the term Angelman Syndrome inside; the description fit Gabbi to a "T", so parents decided to bring this information in with them and request to have her tested. Sure enough she was positive for Angelman Syndrome.
Gabbi has a fairly severe case. She cannot walk or talk, (she never even learned to mumble the words mama or dada). She relies on someone else to get her in and out of bed, dress her, brush her teeth, feed her, and change her. By my senior year I had already known for years that one day I would be responsible for her; that at some point I would become her legal guardian. I accepted that, with fears and doubts, but accepted nonetheless. Back in 2009, it hadn't happened yet, and while I still had my adolescent freedom (to an extent) I was hopefully dating-- having fun and hoping to find someone who might be interested enough in a girl that would one day be responsible for her sister's very life that he'd stick around.
At the time I presented my research and story on Angelman Syndrome I was dating a guy who also had a sibling with a disability (pulmonary hypertension). One night, about two months into the relationship, we got to talking about how one day if something happened to our parents we would be responsible for our siblings and how serious this was, what our responsibilities would entail, and long-term plans. When he asked, "How would you feel if tomorrow I became responsible for him?" I didn't even hesitate. I said to him, "I'd support you. I love him as if he was my own brother and would care for him as well as I do Gabbi. I absolutely love both of your siblings." It was the truth and yet there was silence on the other end of the phone. I should've known then that the relationship was doomed, but it still took me as a surprise a month or two later when I woke up to a message on Facebook where he told me he wasn't ready for the type of relationship I was expecting, and that I grew up "too fast" and that he was "just a kid". He finished it with an apology that he could never be my husband, but if I needed anything else, he'd be there 24/7. I tried to ask him to not worry about marriage as I wasn't asking for that (we weren't even 18 years old yet!), and to give this a chance. He responded...
"I just can't, Andi babe."
Though I appreciated his honesty, it hurt. Sure, it was in part because he was the first boyfriend who had ever broken up with me (and to this day still is), but more so because he solidified a fear I'd had since I was old enough to understand what caring for Gabbi could mean for my future. I wasn't going to get the same opportunities as other people in my life and I knew that. Less family vacations because we'd need extreme accommodations, staying local for college as to be readily available if I was needed to help,not having as much freedom due to over-protective parents, losing friendships or boyfriends because they didn't treat Gabbi with the same respect they treated my younger sister, Lauren... It was all okay and something I could handle. But it was always hard for me to come to terms with the fact that it would be hard for a man to look at me and say, "That's the girl I'm going to marry! I love her enough that I want to care for her sister with her!" (Because lets face it, we're not talking 80 years old and needing someone to check in or occasionally do a food shopping... We're talking two years older than me, but needing assistance with feeding, bathing, changing, paying for pills, etc.) I wanted my own family and there was a good shot, being realistic, it might not happen.
I didn't expect anyone to want to marry me knowing of the "baggage" I came with. Even if somebody did want to marry me, would anyone want to have children with me? Who would want to try to raise a child when they are already taking care of someone two years older than their wife who is in a permanent infant state? Gabrielle's current mental and physical state is approximately that of a child 7-15 months old in an almost 30-year-old body.
My family has spent more money remodeling the house to make rooms able to accommodate her than you can imagine (all out of their own pockets). When they eventually needed an elevator (my father could no longer carry her up and down the stairs) to get her in and out of the house for appointments (or in an emergency) a man in our town conducted a fundraiser. It was never easy for my family, but we always made it work because to us there was no other choice. This was our family. For an outsider though, it was easy too see the burden and walk away from it.
In 2014, 4 years after my high school presentation, I walked in to the Superior Court house in Jersey City and I stood beside my parents as a judge looked me in the eye and deemed me an appropriate legal guardian for my sister. I was 22 years old when I gained my certificate to say I had legal rights to my sister's life and what happens to it. That piece of paper changed my life in many ways. That day I also thought back to the man I had dated in high school and I gave myself an internal nod of acceptance: If I was meant to be alone in order to give my sister the life she deserved, I'd do it.
Because of this mentality, two months later when I was formally asked on a date by a man I'd known since high school, I took a risk and did the unthinkable! Before we even made it to our destination, as we were sitting in his car, I laid all my baggage out-- I told him everything; about me, about her, and about the future I had lined up for myself. For a brief second he turned and looked at me instead of the road and he said, "Wow..." And then he said, "You're really strong, you know that?" So, I reiterated that she was my blood and I couldn't imagine putting her in "a home". That man looked at me again and said, "I understand. I'd do the same." There was a moment of silence and then he asked, "Would it make you uncomfortable if I asked to hold your hand?"
I can't say for certain it was then that I knew I would fall in love with him, but I knew by the end of our first date that he was the one. Three years after our first date he proposed to me. The girl who never even envisioned herself getting married, and never allowed herself to even "plan" her "dream wedding" growing up, was going to become a bride. Still yet, seven months after our engagement, with four vendors booked, it took me standing in a white dress in front of three mirrors (beside my younger sister, my mother, and my best friend since grade school) to realize what I always thought was too far out of my grasp was going to be mine... In less than six months now I will be a "Mrs." I will be somebody's wife. I have found the man who accepts not only myself and all my flaws, but my entire family, including Gabbi. In a way I thank Gabbi, be
cause she filtered out all the wrongs in my life to make me strong and only maintain what would benefit me.
On June 26th she will be 29 years old, and God willing, she'll live to be 29 x3. I c
an proudly say that I am my sister's keeper. And I can happily say, I wouldn't have my life any other way.
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