I’ve found that many things that have had the greatest meaning in my life are usually events that I would have never chosen myself. For example, had I not enduring the painful ending of my first marriage, I would have never met and married my soul mate. Then there is my sister Robin. I was nine when Robin was born. Complications at birth left her with Cerebral Palsy. She never developed motor skills beyond that of 6 month old. She could not walk or nor talk. During her first years and my pre-teens, I found myself embarrassed by her. She looked funny and people would stare. However, as we grew, so did our relationship. My embarrassment slowly began to fade and I became protective. I began to look at things from her perspective. Like the way she watched TV, laying on her back on the floor in front of the console TV, looking up at it sideways. I often tilted my head just to see what she saw. We had a bond that isn’t easy to explain. I never felt bad for her, knowing that she was trapped in an uncooperative body. She was born this way and knew no other way of life. My mother used to wonder what Robin would have been like had she been “normal.” I wondered too on occasion, but I saw early on the gift her life was to me. Her life was not easy, neither was living with her. She had countless operations, made regular visits to the emergency room, ear infections, a metal pin in her hip socket that punctured through her skin one day, pneumonia and the dreaded staff infection. Each of these events brought with it thoughts that she would surely die.
My mother cared for Robin at home until she was 10. She lived in a private care home for a while. That is when she had a feeding tube surgically attached to her stomach. I grieved for a while knowing that she would never taste pizza, Pepsi, or cotton candy ever again. At 18 she was transferred to a convalescent home. Being in a senior care facility, I thought would accelerate her demise. But private nursing care and the once dreaded feeding tube helped her exceed the normal life expectancy of 21 years of age.
I cherished our visits. I would sing off key and she would laugh, I would do a bull and matador routine and she would laugh harder. I brushed her long brown hair, painted her nails and told her about happenings in our family. Each time I made her laugh and she made my heart sing. I talked and she would listen with those big beautiful hazel eyes staring up at me. She was never mad or upset with me whenever my visits were infrequent. She hated no one. Robin did not like pity. The site of someone feeling sorry for her would make her bellow out a heart wrenching cry. All she knew was love. She experienced joy, sorrow and pain too. She communicated through her eyes, the one thing she could control. She had a way with people. If you thought you were having a bad day, a few minutes with Robin would put it all in perspective. I never stopped advocating for her. I was her voice. Shortly before her 26th birthday, Robin became very ill. I did my final matador routine for her in the hospital. I realized the laughter was causing her to cough, which became too much to bear. Robin passed away four weeks later. I knew then as I know now, I will never have another relationship that will give me so much. She was love. I only wish others could see the beauty and understand the value in a life that does not look like our own, but may have value far beyond anything we can ever imagine. I never would have chosen to have a sister with Cerebral Palsy, but I am who I am today because of her. I wouldn’t want it any other way. This I believe.
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