NOTE: Although most of my "Autism Archives" posts pertain to spectrum related issues, there are times when I must follow my heart. Thank you for supporting me.
"We begin to learn wisely when we're willing to see the world from other people's perspective.”
When my son was diagnosed with autism, I learned that the key to connecting with him was attempting to see things from his perspective. By understanding what caused him pleasure, pain, comfort and fear, I was able to gain his trust and help him navigate the world. His perspective also taught me to appreciate beauty and fascination in ways that I had never experienced. My little unconventional thinker also taught me to be a better sister.
My younger sister Beth was diagnosed with chronic kidney disease when she was 11 years old. Her life was forced to change in every way. Although she had the love and support of an extraordinary family, she was ultimately responsible for managing her health and staying alive. She spent 10 hours per night on a dialysis machine in her bedroom. She had to manage a strict and critical diet and was unable to socialize like most young girls. At 11 years old, my sister was forced to leave her childhood and manage life-sustaining responsibilities. This pattern of personal medical advocacy was a constant theme. She faced dialysis, a transplant and organ rejection, and did it with dignity.
My sister and I saw the world differently. We shared secrets, inside jokes and a mutual understanding and admiration that is privy only to sisters, but sibling frustrations were there as well. Her priorities were not my priorities and as we became adults, my frustrations and judgments became more apparent. She missed deadlines, refused to return phone calls and ran perpetually late. I saw her as being frivolous and irresponsible, but my view was obstructed. I didn't try to see things from her perspective and it cost me precious insight into her life.
Life itself was not something my sister took lightly. She fought every day to maintain
medical stability while enduring chronic pain and illness. Despite her physical challenges, she saw beauty and wonder everywhere and those who shared her journey enjoyed the gifts of her vision. Life from her perspective was fragile and she appreciated experiences more intensely than most. In time, I learned to see Beth's world with more clarity. A little maturity and a lot of patience helped me to join in, from time to time, on her journey. I learned to appreciate and admire the woman she grew to be. I became so proud of her accomplishments and only wish that I'd learned the power of perspective a little earlier.
Sadly, on October 30, 2011, my sister lost her fight to kidney disease. Her 34 years were not nearly enough, and I miss her dearly. Although Beth didn't get to spend a lot of time with her nephews, they shared a very special bond. She didn't see autism or a diagnosis. She saw her beloved boys, appreciated their perspective, and played by their rules. They were kindred spirits and adored each other.
The best way I know to honor my sister's memory is to take the lessons she taught me and give them life. By attempting to see the world through Beth's eyes, I am able to slow down and take myself a little less seriously. I appreciate art, and every once in a while, attempt to create my own. I try to dance more and judge less. Life's too short to get caught up in petty issues. The view from the cheap seats sucks. To honor Beth, I'm going to rush the stage!
FACTS ABOUT ORGAN DONATION
The Need Is Real
- 112,829 people are waiting for an organ
- 18 People will die each day waiting for an organ
- 1 organ donor can save 8 lives
