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Organization Information

Families of Children Under Stress

About

FOCUS helps families of children who are medically fragile or disabled - providing summer camps, recreational activities, respite child care, family activities, support groups, critical information

Real Life

Last January, the hospital teemed with friends and family anxiously awaiting the birth of our daughter. Months earlier, we learned that she had hydrocephalus and would never walk, talk, eat, or breathe on her own. While we knew she would have challenges, we expected that she would surpass the doctors' grim predictions. Frankly, we expected a miracle. That meant that she would run marathons, recite Shakespeare, and do quantum physics by Kindergarten. Shortly after birth, she developed seizures as doctors tried one medicine after another to stop them. A few months later, we learned she was visually impaired and had hearing loss. With each new challenge, our miracle seemed more unattainable.

Yet, through these experiences, we grew and changed. We pulled together to keep up with doctor's appointments, tests, and therapies. We learned to coordinate her care and decide which treatments to pursue. We delegated duties and swallowed our pride and admitted that we might not know everything. We pushed our abilities beyond limits and did things we never thought we would be capable of doing. We learned more about one another than we had in ten years of marriage. We laughed harder and cried more, but loved more deeply, learning the humility of relying on others, such as those at FOCUS, for love and support. As I recently reflected on the last year, I realized that even though we have faced a number of challenges in her short life, we still got our miracle. It just didn't manifest itself in the way we expected. The miracle is not what she can do, but how she transformed us.