THIS I BELIEVE
I believe that growing up with disabled sibling provides untold opportunity for insight and wisdom. That’s the way it was in our family. My brother, Steve, was born in 1947 and our parents were urged to let the hospital arrange a place where Steve could be cared for by individuals that “knew” about people with cerebral palsy and mental retardation.
After one night at home without Steve, our parents returned to the hospital and brought Steve home –our family would learn how to care for Steve and Steve would demonstrate his amazing abilities to all of us, with more determination than any of us would have ever experienced. It was not on easy task, but everyone – grandparents, family, friends, church members and neighbors pitched in to help. There wasn’t a formal plan, our life went on and Steve was included. No one stopped my parents in their quest to have Steve be a part of the community, there were often barriers but we were able to rise above them, change course and continue. As another brother once told the local paper, “Our parents had no political agenda; they just wanted my brother to have a normal life.”
That “normal” life encompassed a good deal of humor. Humor is an important part of every life, but was especially important when dealing with a disability in your family. “Spill you milk Steve so we can eat” was always the first comment at the dinner table. Mother said it saved time to clean it up before we all sat down. We laughed as we traveled at high speed across town to the doctor, often with a police escort, because Steve had suffered some sort of injury while we jostled him on the trampoline or dumped him off the handlebars of our bikes. He had such a great smile and infectious laugh you could never leave him out of an adventure! There were many “happy family experiences” our term for a family activity that must include one senior citizen, at least one wheelchair (our Mother had Multiple Sclerosis and was also in a wheelchair), and was a multi-generational event.
In the summer of 2005 Steve made several trips to the emergency room and was finally diagnosed with inoperable brain cancer and 13 days later he died. While we sat with him in Hospice, holding his hand and playing music he liked, our family counted the reasons we were blessed to have Steve in our family. We started with making our TOP 10 list, but the list became longer and longer. It’s amazing the education he provided for his siblings!
Steve taught us to ask “why” – he always wanted to know all the angles and wasn’t satisfied until his questions were answered. Most of us only skim the surface when asking about things, Steve taught us to always look deeper before making up our minds.
Steve was interested in everything his family did. Asking about nieces and nephews and keeping up with their everyday lives. He took time to call his family to see what was going on. How often do we ignore the successes of our loved ones, to busy with our lives to stop and take notice?
Steve knew how to laugh and smile. He was interested in all those he met and all those individuals that provide services to help him stay independent in his life. He loved to hear about people and was always thankful for their contribution to his life. He loved “I Love Lucy” and the “Car Guys”. No matter where he was in the house you could hear him laughing and giggling. What a wonderful sound! His family all misses that sound!
I learned to juggle wheelchairs, find cars that accommodated at least 2 wheelchairs, sit in the front rows at concerts, demolition derbies and basketball games, not to freak out when Steve rode horses or slid down the zip line at summer camp and to smile at all the “happy family experiences” we had during Steve’s 58 years.
I believe that ever person has a reason to be on this earth and that ever person is a teacher. Never count anyone out because they have a disability, you can learn a lot about life from that person! I am certainly a better person for having Steve as my brother!
July 3, 2007
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