Blue Skies and Butterflies

By Bob Degree

   “Say goodbye to your youthful innocence, Mary—you’ve just turned 18. This is the time in life when you begin to learn the ways of the world, moving beyond a belief in sunshine and rainbows.” But for Mary, it’s not that simple. You see, Mary was born with what some might call the most beautiful birth defect one could have: Angelman Syndrome. This genetic condition can come with many debilitating side effects, but in Mary’s case, it simply made her laugh and smile her way through life—no day was ever dark, always full of the best energy the world could offer.

   She responded to her brother with the same innocent, positive energy that had always defined her since she first learned to control her facial expressions: “You are so silly, Brian. I love you.” Brian was not being mean. In fact, he was very protective of this special soul. He was half joking and half serious because he feared that his sister would end up hurt—physically or emotionally—and he could not bear the thought of his youngest sister not knowing the dangers.

   Mary should have learned some of this, as she and Brian were two siblings left without parents. Their father, James, died in the Twin Towers on 9/11, and their mother took her own life, unable to go on without him. Mary was very young at the time, and the two of them went to live with their aunt until they turned eighteen. Brian knew that it would be his role to be there for her for the rest of his life. Some days it bothered Brian, knowing that this could be an obstacle to finding his own love and having children—for Mary would be his responsibility for the rest of their lives. But it was her smiles and ever-present connection to the joy in the world that kept Brian looking forward with a sense of being gifted, even when darkness sometimes crept in.

   It’s Sunday, and Mary’s birthday party is about to start. All her friends were invited. It seems that Mary has more friends than there are stars in the sky. They all seem to appreciate the overflowing effervescence of life, she embodies. They act like good sponges, trying to soak up all her goodness. In this trying world, Mary’s light shines the brightest. Brian's pride always shone through around her. She was a constant reminder of love and joy. Understanding what they had been through in their lives so far, he believed that she, at times, was the only thing keeping them on life’s railroad track.

“Blow out the candles,” said Aunt Maggie. Maggie had been their legal guardian for many years now, and Mary never thought of her as anything but Mom. But Brian respectfully knew that she was not. Because this was Mary’s eighteenth birthday, it would also be move-out day. She and Brian had rented a nice two-bedroom apartment about three miles away. The rent was not cheap, but it was time for the two to carve their own path—one Mary believed would be full of blue skies and butterflies.

   While working around the apartment building, Brian's new neighbor, Hugh, came by to welcome him to the neighborhood. Even though Mary and Brian had only lived three miles down the road, this was still a new place with different people and eccentric personalities. Hugh made it a point to share that the area had a few people Brian and Mary should stay away from. The worst of the worst was a man named Slippery Sal. He was a man, dark in spirit, who loved to pull people down and drag them through the dirt long enough that their inner flame of love and respect was fully extinguished. Brian shared that he was concerned about his sister running into him and his posse. He wasn’t sure how Mary could cope with such darkness, given her overwhelming positivity and lack of exposure to people like this. Brian thanked Hugh, and they went their separate ways.

   Two weeks later, Mary convinced Brian that she would be fine if he wanted to go to work—that she would be okay. Since the last couple of weeks had gone well, he decided to head in. At two in the afternoon, he received an urgent call from Hugh. Sal and his boys were on their street and looking for trouble. Hugh said Brian should come home right away. He also assured him that he would head over and protect Mary until Brian arrived.

   Brian’s anxiety hit the roof. He bolted out of work, and as he did, he could hear his boss saying, “Where are you going?”

   “I’m going home to save my sister!” Brian responded

   Seconds felt like hours, and minutes felt like days as he drove home to Mary. Every bad thing he had imagined throughout his life with Mary flashed before his eyes. Hopefully she wasn’t hurt—if she was, he wasn’t sure what he would do. His heart felt like it was about to jump out of his chest as he pulled around the corner. There they were—Slippery Sal and Mary—on the stoop of their apartment building. He ran as fast as he could from his parked car to the front of the building, only to hear Mary say:

  “Brian, what are you doing home from work? I’d like you to meet my new friend, Salomon. We’re playing tic-tac-toe.”

   He looked into the fearless eyes of his sister, then to Sal—and saw something he didn’t expect. Sal’s eyes and heart had been melted by the grace and love that Mary shared with him. He seemed like a teddy bear, filled with the love and respect he had been born with before the streets changed him. Just being in the mere presence of Mary and her positive energy had helped him remember that.

  Some people feel more comfortable putting others into categories. But isn't it better to recognize the positive energy we all have to give one another, regardless of which pigeonhole they come from?

   Many say Mary is disabled—legally, she is. But it’s hard to see how someone who is so giving of love and receives it without reservation, who embraces all who come into her vision, who shares and opens herself up to the energy of the universe as Mary does, could be considered disabled. By comparison, she makes Brian—and everyone else he knows—feel like they are disabled, because they lack her ability to love so openly and without fear. Mary is not disabled. She is differently abled. She is a true gift.

“Hey Brian, there is a butterfly in the sky. Isn’t that beautiful?”