By Cyndi Jones, Publisher
This year my family has been planning the celebration of my parents' 50th wedding anniversary.
It has been a lot of fun and has provided the momentum to visit my parents more often than usual while we work on the arrangements.
When I think about my parents having 50 years together, I am amazed. Not only because 50 years is a long time for any couple to stay together these days, but because disability creates additional stress on family life.
I know it wasn't easy for my parents when I had polio in 1954. I had two older sisters aged 4 and 5, and my Mom was pregnant. The grocery stores wouldn't let them in because they feared catching polio. The pre-school wouldn't let my sisters attend either.
My Dad worked days and went to the hospital at nights. And because I was in an iron lung and needed suctioning, my parents had to pay for three shifts of private duty nurses, which cost as much as my Dad made.
The people at our church were a big help. They made grocery deliveries, helped with child care, but most importantly, they didn't abandon my family during this crisis.
I remind myself of these things because I know it was hard on my parents, although they never talk much about the difficulties during that time of their life. I really don't remember them talking about any other difficulties either. They just dealt with problems as they came up and did the best they could.
While preparing for this big celebration, I began thinking about families with children with disabilities. The increased financial burden. The additional time that therapy and medical appointments take away from the usual family activities.
The educational system is no small time trap either. My Mom had to advocate for my right to an education. She was ahead of her time because she didn't want me in a special school. She wanted me to attend the same neighborhood school that my sisters and brothers did.
My parents were for inclusion long before it was inclusion. I remember going to company picnics and always being included in the games and activities. There was also a family rule that, if one of us wasn't welcome, then none of us was welcome. I guess at the time it didn't occur to me that this rule was meant to accommodate my needs, but in retrospect, I think it was.
Families go through grief when a child becomes disabled. Some of this goes unspoken. Sometimes there is blame: If only you (or I) hadn't (or had only) . . . everything would be OK now. Families also experience isolation as long-time friends and relatives don't know what to say, so they say nothing. Many families disintegrate as a result of having a child with a disability. But somehow my family held together, and even grew stronger, during this disability-induced crisis.
I know my parents are proud of me and my sisters and brothers. They raised great kids. But the truth is, we are proud of them. Happy 50th Anniversary Mom and Dad!
Cyndi Jones is Publisher of MAINSTREAM.
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