As you may realize, raising any child with
chronic medical problems, such as with CHARGE, can be filled with unknowns. Seems that
when you get over one hurdle, you come up against something else. You not only come up
against medical problems but there are emotional problems for both the child as well as
the parents. As the child grows they begin to have questions and their own concerns about
the problems they have.
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As she grew, when we went on family outings we would take a red wagon, that we had put a back onto, to pull Missy around because she did not have the strength to walk any distances. On the rare occasion that we did travel, we would always locate the hospitals along the way. We would always have to consider the weather. Due to Missy heart condition, she couldn't go outside in heat and humidity without getting sick. It was also very difficult for Missy to participate in school outings. With Missy's condition, the schools would always prefer that one of us go with her. If it was to the zoo or park, usually she could not go because of the amount of walking. Many times Missy had to miss out. When we planed our trip to Disney we did a lot of planning. We had our doctors fax Missy medical records to the hospital near Disney. We also notified the airlines and Disney of Missy medical needs. They had a wheelchair ready at the airport and Disney for Missy to use. She still gets tired when she has to do a lot of walking. She enjoyed our trip. It was the family's first vacationing 16 years and Missy's first ever.
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Initially Missy went to special schools for disabilities. At grade school age we felt that she needed to be with other children so we entered her into the local mainstream school system. We had the schools develop modified classroom programs to allow her to be primarily in the regular classes. She's been enrolled ever sense and doing well. The biggest thing that we're unable to control was her acceptance by other children. Missy was teased a lot. Even today in high school, though much less. She has learned to deal with most of it but we know that it still sometimes bothers her. There are still others who do accept her for who she is. Missy does spend most of her time home, though she does have many school friends. Missy is still smaller and younger looking than anyone else in her class.
The one thing that we always taught Missy is that she can accomplish anything. It may take her longer, but she will do it. Missy always wanted to learn to ride a bike. The doctors told us that she never would, because of an inner ear and balance problem. It took her till the age of twelve, but she did it. .. |
