Michael was born in 1986, sixteen weeks premature, weighing just over a pound. He was so small his father’s wedding ring could slide up his arm. His chance for survival was only ten percent, yet he lived for ten years. The first three months we spent in neonatal intensive care. It was a roller coaster ride and our family entered a new world. A world with its own language and culture. Many think that the experience of having a child with disabilities either breaks you or makes you stronger. The truth is it does a little of both. When we learned Michael had extensive brain damage and would be blind we wondered how our family would survive. The early years became a series of hopes dashed by reality.  He would not walk, he would never talk, he would not see, he would eat through a tube and he would always have seizures. The world was turned upside down. At one year Michael still weighed less than ten pounds. Life was fragile and lonely. Slowly Michael’s personality began to grow. It was Michael’s laugh, his joy and his determination that became the strength of our family. He was the joy of our lives. He thrived in our local public school and had a wealth of friends. He loved with all his heart. Things became difficult when Michael would get sick again. Throughout his ten years Michael had seven stomach surgeries. Children’s hospital became a second home.

When Michael was five I met Mary, a special education teacher. We shared a vision for creating a place that would provide emotional and physical support for families with children with disabilities. Many people think the Center was created in Michael’s memory but it was actually conceived when Michael was eight and had been healthy for over a year. Our dream became a reality when we were given a parcel of land in Hopkinton, Massachusetts. Two years later, as the house was being framed, Michael went into the hospital for what we thought would be an easy surgery. This was not to be, the surgery was complicated and Michael ended up in the hospital for a month. Michael died nine months later, at home, from complications of the surgery.  During that time Mary and I had lost our ability to dream, Michael’s care was all consuming. We were blessed to have two local businessmen continue building, knowing that someday our hearts would return to the mission. We received $158,000 in Michael’s memory and the house was completed. Slowly we came back and one year later the Respite Center opened, providing respite care for four families. Eight years later over 130 families use the Respite Center and we offer seven different respite programs. Our ability to dream and our passion for helping families with disabilities returned. Many see the house as Michael’s legacy but his true legacy is the wisdom he gave us and the ability to know how to help when others can’t. Michael would have turned eighteen this year, his class graduated from high school in June. As each year passes the sweetness of Michael’s memories grow and the lessons he taught become clearer.

As the Respite Center enters its eighth year, Mary and I thank you for the support you have given to us throughout the years. Your generosity has helped many families. Michael’s story reflects many of the same things experienced by our families. We ask that you take a moment to read some of the stories from families you have touched.

With love and appreciation,

Sharon

Michael’s Mom

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