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It is hard to believe that my little sister has been dead a full ten years. It does seem just like yesterday when I kissed her goodbye in her casket and we put her to rest with her Ballie, playing the Macarena. (It actually was appropriate, no matter what you might think). It is almost as hard to imagine a life in which I had a sister, the world as a whole and my personal world has changed so much and so many times over in this last decade without her. Reflecting on it, life certainly seems less magical. Less beautiful. Less hopeful. Less full of laughter. Just…less full.

Ali was born a twin in 1987, to my father and stepmother. Her twin Alyssa, was stillborn, and had been deceased for some time in the womb; due to this and other complications, Alison was born with a long list of medical conditions that I couldn’t begin to do justice. She was microcephalic (meaning that her head and brain were far too small and that she did not grow properly, staying very small), had several different types of siezures from occasional grand mahl to numerous daily ones perceptible only to the most trained eye, was cortically blind (meaning that here eyes functioned well, but not the portion of the brain that processed the visual input), and also suffered from severe spastic cerebral palsy. She never did learn to crawl or sit up, or talk, or care for herself; instead remaining infant-like in most ways her entire life. Still, her spirit and intelligence shone through; she had a strong personality that defied all her hardships. There were times that she’d learn a new skill…feeding herself sliced hot-dogs or cheetos painstakingly without crushing them before they got to her mouth, using a texture board with buttons that played back 4 or 5 commands (’present’, ‘eat’, ‘drink’, ‘play’…) to respond to teachers. But these skills would disappear with a major hospitilization, and were really more for our (her family’s) benefit than hers. She remained on the level of about a 6 month old most of her life until passing away unexpectedly at the age of ten, ten years ago today. Losing Ali was to each of us as individuals and all of us as a family, probably the most devastating thing to ever happen. I wish I could say that this kind of grief lessens after the kind of time a decade represents, but it just doesn’t. I think it deepens, becomes more raw with time. Remembering the joy that Ali projected and enveloped us all in helps.

Alison spent her days mostly laughing. And we, her family, spent our days doing whatever we could to keep her laughing. It really was our singular purpose to keep Ali happy…and worth every bit of work it took from the remaining six of us. I don’t think any of us realized at the time that this was also the glue that kept our family together. When she was happy and laughing, not much else mattered. And when she was not, it was important to fix, real quick. Her lungs were one of few organs that were so healthy, and she put them to good use.

I’ve been reflecting on what it was like to have a sister like Alison, on who it made me and how it affected my path. I miss her so much still that it’s hard to do; difficult to form the words and the sentences into logical thoughts. We were close, in a way that didn’t need words between us, although one of her first discernible words was ‘Issy’…her version of “Sissy, or Sis”…what my family refers to me as. That was a special day for me. In remembering her, there’s so many things to say, points to make, special memories to recall….words could never do it, not in a single article, so I will just focus on one thing I learned from Alison. Please don’t expect eloquence.

I think, most of all, Alison taught me not to take life or myself too seriously, and to choose happiness….which is what she did each day of her life. Ali may have been the happiest person I’ve ever known. She taught me that sometimes you just have to play and laugh, and shake your ballie at the world in defiance. Ali was not ever without her ‘Ballie’…a specific Fisher Price yellow plastic ball with smaller plastic balls with bells inside of it. Laying on the floor on her back usually, she would wrap her fingers through the cutouts in the large ball and lift it into the air, shaking it, banging it on the floor, shaking her head and clicking her tongue to her own beat. And laughing. The more noise the ball made the more she’d laugh, and click, and smile. A big irrepresible grin that made everyone in the room do the same. The rest of us might be worrying over a sudden crisis, discussing it heatedly until Ali would make her point with her laughter, and we’d have to stop and laugh and play, too. You just couldn’t help it when she turned on the charm.

She didn’t care if it was a proper time to shake the ballie and squeal with delight. If the electric man was there to cut off the service…so what? Shake that ballie! The preacher was droning a bit? Ballie time. Long car trip? Waiting room perpetuity before being stuck with giant needles? Bring on the ballie. She’d punctuate the most stoic of moments with a porpoise-like squeal and a rattle. Sometimes we intervened and took the ballie away; replacing it with her other favorite toy, crinkly paper…a less noisy happiness tool. Ali wasn’t complex, or burdened with the minutiae of the right and wrong way to be, what to worry about, or pleasing others. She just wanted life to be fun, and she was going to do what she could to make it that way, every day- even on the worst day. Unconditional happiness is a choice, an action, not a state of mind. That is a valuable lesson to take along, no matter who you are.

Having Ali in my life did teach me so much more. How to be accepting of others’ differences, and to know which can and can’t be helped. How to handle crisis. To be grateful for my healthy body, and to use it. To truly appreciate the sensual world around me- sensual not in the sexual sense but in the tactile, the odoriferous, the loud and the quiet, the soft and fuzzy, shiny and crinkly things of the world. How to talk to government and insurance agencies. How to turn anything into a game. I’m still learning from her every day. I’m so thankful for those lessons, for the opportunity to know Alison, to have had the good grace to get to care for and love her for a time in my life. I think of her every day in large and small ways. Remembering how special she was helps me to recall the magic she brought to life and to try and keep it alive in my own, and even when it’s hard…to choose happiness.

If you aren’t lucky enough to know a special needs child, go meet one…volunteer at a school’s special ed program, a children’s home, the hospital. If you need help finding a good place, contact me and I’ll help. You will find the most unexpected wellspring of hope and happiness in them, in the face of situations that will make your worst problem seem petty. When you find yourself surprised at their resilliance, pay close attention; and realize it’s not that they have some special secret to being so happy. It’s not childhood niavete either, the burdens children like Ali carry impart wisdom beyond years. They know their fate and smile anyway. Why? It’s that they choose to be happy, every day, regardless of thier circumstance or health. We would all do well to take that lesson to heart. Thanks Ali, for teaching me in person. I miss you soooo very much. We all do.

Big wet kisses and special hair brushings and crinkly paper…. Love Issy.