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My special needs sister taught me to let go of a lot of rules


I’m definitely not one of your traditional “parents,” so to speak. My partner, Stephen, and I became the main caretakers of my special needs sister, Angela, a little over two years ago. Needless to say, we weren’t too sure what this journey was going to entail; however, we were determined to give her a better quality of life.

Angela is 39 years old, so we always have a huge range of emotions to deal with. She is my sister, but we both treat her like our daughter. She is a very capable person, but we deal with the daily tasks of what every other parent in the world has to do and remind her of tasks such as: brushing her hair, making sure her shoes are on the right feet, reminding her to wipe herself and wash her hands after using the bathroom, making sure she properly brushes her teeth, help wash behind her ears, picking her clothes for the day and for sleeping in, and doing our best to make sure that her hair resembles that of one of her many favorite Nick and Nick Jr. TV show characters. Do you really know how much hairspray that takes? We do!

Before she moved in, Stephen and I came up with a huge list of rules… as most parents do: no cussing — she does enough of that on her own when having a meltdown; nothing but organic, healthy eating; balanced meals; not too much TV and the list goes on and on. Before you knew it, we decided to let her eat cake and pie for breakfast. Not always, but once in a while.

You see, Angela is not supposed to be alive today and is a walking medical miracle. She isn’t supposed to be alive — but she is. The first time she asked if she could have a cupcake for breakfast, we were like, “Hell no! You need to eat something healthy and good for you!”

Over the next few months, we changed our minds. We wondered how many times she was told “no” before. I mean, haven’t we all eaten something for breakfast that’s out of the norm when we just craved something special? Angela is a little bit relentless when she’s determined. It’s part of her mental disability, but she will ask you something over and over until she gets the answer that she wants — or until she understands what we’re truly trying to say to her. The day came that we caved. She gave the biggest smile that you could ever possibly see. Her eyes widened so much we thought her eyes were going to pop out of her head.

She was able to eat a cupcake for breakfast. Okay, maybe we let her eat two. That’s beside the point — don’t judge us. Sometimes in life, we have to break a rule or two to have balance. It’s okay to color outside of the lines every once in a while, to make life a little more interesting and spread a few smiles.

Image: David Murphy

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