My sister was diagnosed with Angelman's Syndrome at the age of 5 years old. When she was just 5 years old, we were told all sorts of horror stories about all of the things she could never do. Now at the age of 18, she can do so much more than anyone could have ever imagined. She can say a few words, she can walk, and she can help with certain tasks. The fact that she can do these seemingly simple things is a blessing. The road to get here though was long, and rocky.
When I was younger, I had a very hard time wrapping my head around the fact that my sister was not like other sisters. We couldn't share secrets, we couldn't play certain games together, and we couldn't even fight like "normal" sisters. She also has aggressive tendencies, and would take it out on me. I started to get a feeling deep down in the pit of my stomach that she really did hate me. I ended up talking to a counselor in grade school about my sister. I don't remember much about it, but I remember we made bracelets and hair ties, and we just talked about my sister. We talked about how this is how she communicates, and that she gets frustrated that she can't tell me what is going on, and that's why she lashes out sometimes. She didn't hate me. After that realization, our relationship changed. We started acting more like "normal" sisters. Sure, we still had our fights but, siblings usually don't see eye to eye on everything. But then one day we were playing out in the front yard, and she hit the ground. I was still young at the time, probably 6 or 7, and I saw my sister have a seizure. I don't remember any seizures before that one, normally when she has a seizure, she stares off, and doesn't collapse. I will never be able to get that image out of my head. That was the moment I knew we would never just simply be sisters. I was her protector, her way of communication, and most importantly her friend.
Fast Forward to Middle School: I started to become really excited to tell everyone about my sister that had Angelman's Syndrome. I wanted everyone to know about it, and care about it as much as I did. I wore my blue rubber AS bracelet every single day for years until the day that it broke. I remember that we started going to AS walks around this time as well, and I can't even begin to describe how comforting it is to find hundreds, to thousands of people that have similar experiences, and hardships. I also just thought that they were fun because I had friends that went, and I started becoming friends with a couple other girls in the community that has sisters with AS. Even though I was excited to tell everyone about my sister, doesn't mean that everyone else cared. This is also the time that I started noticing the looks that people would give her during a "meltdown", or when she would try to sign to my mom or I, or just simply because she was in her wheelchair. People are never discreet about these things, and some people full on stare at you like you are in a cage at the zoo. Or, if their kid notices, and asks a question, a lot of parent's just blow them off. I think that definitely influenced why I thought that we should all start talking about AS, or any other disability, disease, or any hardship. If we are informed, we can understand, and hopefully we can at least get a glimpse at how someone else perceives a situation, and how hard they may have to try to be able to do a "simple" task independently.
When I got to HS, everyone knew about my sister, and most of my friends were incredible, and they supported her, and cared about her, and treated her better than I could have ever imagined. During my junior year of high school, my sister got sick. She started vomiting uncontrollably, until it was bloody, and we rushed her to the ER. While she was there, her lung collapsed due to aspiration. She was in the ICU for over a week. That was the lowest I have ever been. We prepared for the worst, but she recovered. Little did we know that that moment would start a whole new journey of numerous trips to the ER, and a long awaited diagnosis of cyclic vomiting. They think that it all started with just one anxiety attack. She had a hard time in school, because her teacher never showed compassion, or kindness towards anyone. AS is also known as the "happy puppet syndrome" and before she went to high school, she was happy. She laughed, she had fun, but that all changed once she moved on to high school. The anxiety attacks wouldn't stop, she had one, after another, after another, and sometimes there would be seizures. It seemed like a never ending battle. We were usually in the ER about once every 10 or so days.
One night, I was home from school on spring break and my parents went out of town and after finally getting my sister to go to bed, she woke up, and it the cycle started. I have never been more scared in my entire life. I don't know how my parents got through years of these trips, and I did it for one night, and could hardly muster up the courage to handle the situation. It seemed that every time I came home, we would end up back in the ER. I thought, and still do think that maybe if I wouldn't have gone to a school 3.5 hours away, maybe it would have been different. Maybe me being gone made it all worse, and every time I came back she would have these attacks because she knew in just a few days that I would pack my bags and leave again. I don't think that there is anything else that could make me feel as guilty as I do when I leave home. I feel guilty not being around for her, I feel guilty for not being able to help out my parents, I feel guilty because I don't feel like I play a big part of her life anymore. Even though, I know I need to have an education so I can get a good, and steady job, the guilt is never ending. I just hope that one day, it will pay off and I can help out more often again.
Today, we just hit the one year mark of no ER trips. I wish I could say it will be smooth sailing from here, but there's really no such thing as a smooth life. I just hope that even just one person reads this article and that they know that they are doing everything they can for their sibling. It is hard. Nothing about this is easy. It is okay to admit that it is hard and some days you break. You were given this life because you are strong enough to live it.
I could never thank my friends enough for how kind they were/are to her, and I hope that they know how grateful we are to have them in our lives. One "typical" girl was in my sister's class way back in elementary school, and she has stuck by her side since day one. She comes over to hang out, they go out, and she treats her like a true best friend, and she is hands down the most incredible young woman I have ever met. I am amazed by each and every one of these people every single day.
