Are you ever just overwhelmed by the horrifying thought that maybe, nobody ACTUALLY wants you around? And it’s not that you think everyone hates you, but it’s just that you’re not special to anyone? And that its really kind of sucky that you’re about 98% sure that nobody thinks “Wow, I just really like talking to her.” and that you could probably just disappear without anyone caring that much?
I wrote this on my old site that I’ve since deleted but I just had to save this one about my sister Rachel. I hope you like it. Enjoy!
On Twitter, I recently asked “If I wrote an article that had nothing to do with sports, would you read it?” Most of you said yes. I’m glad, because this is something I have wanted to write about for a long time.
This is about somebody who teaches me to put things into perspective each and every day. In order to get to the point, I have to start with a long story. I will give you the foggy memory part, and then fill in the blanks after.
My sister was born when I was three-years-old. I don’t remember much about the day she was born, or even the months that followed. Again, I was three. I remember my grandparents helping to take care of me. I think I remember seeing my dad as well, but I’m not sure.
I vaguely remember visiting my sister in the hospital with my parents. We had to wear some sort of powder blue hospital garb to go in and see her. I remember how big the bin full of garbs (scrubs, I guess?) was, and being the fidgety, hyper child I was, always taking way too long to put it on.
I remember going up to the little glass box she slept in. I remember my parents telling me to be very careful. I remember lots of machines, cords, and buttons. I remember my parents talking to nurses and doctors, and not understanding or really paying attention to them.
I remember holding my sister for the first time when she was brought home four months later. That’s a weird moment for a new brother. That’s when she stops being just some baby and starts being your sister. “Whoa! The baby lives here now!”
Other than that, I don’t remember much. Here’s what actually happened.
One day, my dad called my mom at work like he always does. She wasn’t there. My mom had gone into labour and left for the hospital. The birth of a child is a stressful moment for any parent, but it was especially stressful in this case because my mother was only five-months pregnant. My dad rushed to to the hospital right away.
When my sister was born, the doctors swiftly took her away. Out of the room, out of sight. My parents didn’t even get to hold her for the first time. In fact, they didn’t even know that she was a “her” yet. The only thing they knew was that their second child had just been born, boy or girl, and was being taken care of by doctors in some other room.
My sister was born four months premature, weighing 680 grams (1.5 lbs). To give you an idea of how small that is, a jar of peanut butter is one kilogram (1,000 grams).
They gave her a 50/50 shot.
She spent much of the first four months of her life in an incubator in the hospital. Despite the odds, the doctors did some amazing work, and four months later, my parents brought her home.
If you look closely you can see my sister in the incubator. The diaper, specially sized for premature babies, is cut in half. The M.S.H. on my sweater stands for Mount Sinai Hospital. Without the dedication of the doctors and nurses there, Rachel would not be here.
Just because she was home did not mean she was out of the woods yet. She was born with such tiny lungs that even at four-months-old, she would often stop breathing during the night. Still, she continued to survive.
At about one year old, my sister looked just like any other baby. The only noticeable thing wrong with her was a dime-sized red mark on her right cheek. With the doctors still heavily involved in her life however, tests revealed some issues.
She was diagnosed with cerebral palsy, among other complications. Throughout her childhood, she required eye surgeries, countless physiotherapy sessions, and special schooling. She wore plastic ankle braces to straighten her feet for several years, and never really learned how to walk properly.
She can walk now, but not well. She drags her feet quite a bit and walks off balance. I bought her shoes last year, and while the woman at the store was describing the cushiony sole, I interrupted and said, “No, no. I need shoes that will survive a nuclear attack.” They’re still intact, so, so far, so good!
For the first few years of her life, my sister was considered developmentally delayed. As symptoms continued to show themselves however, she was finally diagnosed with autism at age six.
She can speak now, but only those close to her understand most of what she is saying. For example, I know that “do you want some cookies?” actually means “can I have some cookies?” She’s telling me the question she wants me to ask her. Strange system, but it works.
She has the mental capacity of a three-year-old on most levels, except for her unbelievable ability to remember everything. Every line of every movie or TV show ever. She can recite lines before they’re even spoken, even if she hasn’t seen the movies for several months, or even years. Toy Story? Forget about it. Lion King? Laughs and songs the whole way through (except when Mufasa dies. Cue the waterworks).
Those tiny lungs I mentioned earlier are no longer an issue either. Every morning at around 7am she’s up singing so loud that it wakes me up from the next floor up. Normally after that she’ll quietly whisper “Shhh! Steven is sleeping.” Oh well. That’s what coffee’s for.
My sister shares so many things with other people her age. She experiences happiness, sadness, anxiety, laughter, anger, excitement – the gamut of emotions. Obviously she experiences those emotions differently than most, but she has them. This is why Christmas is such a strange holiday to experience with her.
She absolutely loves Christmas songs and holiday specials. One year there was a holiday special marathon that must have been at least three hours long. We taped the whole thing, and she would watch it front-to-back well into the summer. I’m not ashamed to say I often watched it with her. The Charlie Brown Christmas special is a classic, and the criminally underrated Pinky and the Brain Christmas special is awesome, too.
One thing about Christmas she doesn’t care for though: Presents.
She doesn’t want all the attention to be on her, she doesn’t like the fuss, and she could care less about what’s in the gift box. If it’s cookies? She’s good. Anything else? She couldn’t care less.
I was Christmas shopping today, and I got an outfit for her Christmas present. I caught myself briefly thinking “I hope she likes it,” and she might, but I think wrapping the gift is pointless, because again, she doesn’t like the whole ceremony of opening a gift.
It got me thinking though. I thought about all the things I have in my life. I have a car, but if I really needed to, I could take public transit wherever I need to go. I only need a few shirts and sweaters, but I have an entire closet and dresser full of them. I have stacks of video games, hundreds of songs on my iPhone, I can tweet any pointless thought in my head from pretty much anywhere on the planet, and I have several jobs doing what I love – talking about sports.
Despite all of those things, I still catch myself complaining. “This isn’t working. That isn’t fast enough. Why is that like this?”
Then I look at my sister. She doesn’t care about gifts and gadgets. She doesn’t even like when people sing her Happy Birthday. She doesn’t need half the crap I use, and complain about, on a daily basis. She’s just happy with what she has.
I am so fantastically, unbelievably lucky, and everyday she teaches me that. She teaches me patience. She teaches me understanding. She teaches me that I have a lot to learn.
Think about what you have in your life. Family, friends, the things you have. Not everybody is as fortunate. For every tough situation that you’re in, for every hardship you encounter, and for every time you’re absolutely fed up, there is somebody else who would love to be in your position.
Regardless of the fact that it is the holiday season, regardless of your religion or ethnicity, we have the power to help people.
Donate clothes, because somebody will wear them. Donate food, because somebody will eat it. Donate time, because somebody will cherish it.
My sister always reminds me of how lucky I am. For these holidays, and all year-round, I encourage you to take a moment out of your day, think about how lucky you are, and help make a positive difference in people’s lives in any way that you can.