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Dancing in the rain.

Article Excerpt
Chelsea brought sunshine into our lives the day she was born in 1992, but she also came with unexpected clouds. She was born prematurely at 27 weeks gestation and weighed only one pound, six ounces. We listened as the doctor told us that 80 percent of babies her size just don't make it, and the ones that do have profound disabilities. Happy Birthday, baby.

We weathered so many things during the four and a half months she spent in the neonatal intensive care unit, and she sailed through most of the storms. From heart surgery to repair a duct, to lung damage from the respirator that kept her alive, to shortened tendons from lack of mobility, everything would be outgrown or repaired with time. The really bad news came at three months, when the doctors told us she had developed retinopathy of prematurity (ROP), a disease in which the blood vessels in her eyes were growing incorrectly and could cause her retinas to detach. It was then that I learned the first of many lessons for raising Chelsea--find a library, research, and network to gather even more information. When the phone call came to tell us she was being transported for eye surgery in the hope that they could halt the progression of the retinal detachment, I was as ready as any layman could be to deal with and understand the medical verbiage and longterm repercussions that would come. At least that's what I thought.

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Many eye surgeries later, we brought her home and began the journey into learning how to raise a daughter who has visual impairments. We slowly got used to having specialists come into our home and lecture us on how to raise her. That one was hard because no matter what the specialists sometimes said, she was still our baby, and we never forgot that sometimes the parents know their child best. We figured it out and made it up as we went along. She didn't like the therapy to stretch a tendon in her foot, so we made a game of it that involved hanging her upside down by her feet--therapy accomplished and no more crying. Not what the therapists recommended, but it worked for her. We never forget that it is all about what works for her.

Chelsea lost all of her vision by eight months of age, and her eyes stopped growing. In order for her eye sockets to continue maintaining a normal growth pattern and appearance, Chelsea got her first set of eye prosthetics on her first birthday, to fill the socket. She slowly grew, she thrived, she learned; it just took her a little longer than the average child.

I think that our oldest daughter, Aleia, had more impact on us and Chelsea than all the therapists combined. Aleia was four years old when her sister was born and rarely resented the attention and time that Chelsea...

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