OUR SISTER SUSAN

ur sister Susan Kathleen Ferron was born in the summer of 1950, when the word "retarded" was barely whispered in polite company and when "hiding" the handicapped was the conventional way.

But Susan's living and dying bore witness to the value and dignity of life from conception to natural death -- even life with disabilities.

When she was born, our family thought Susan was a most beautiful baby, with her smiling blue eyes and golden natural curls. The disabilities that would manifest themselves over the years were shielded by her adorable appearance and engaging personality.

By the time genetic testing for Down's syndrome was commonplace, Susan was 9 years old. She may well have had one of the more recently discovered types of Down's, since she exhibited many of the symptoms.

Back then, our family consisted of our parents and us four children -- Jay, Peg, Susan and myself. (Two more sisters completed the family years later.) Our extended family was quite large even then, so Susan was one of some 30 cousins growing up.

Back then, with no special ed, no Special Olympics and no social clubs for persons with disabilities, Susan was nonetheless blessed with many relatives and friends, as well as a Catholic parish and school that included her.

How ironic that when Susan died in 1989, special ed was available across the country and Special Olympics was thriving, yet mothers no longer had to give birth to special babies like Susan.

As an infant, Susan's low muscle tone and delayed speech became more and more noticeable. She had respiratory problems and was slow to sit up and to walk. Eventually, low thyroid and other conditions afflicted her.

Susan could speak well enough to enter school, however, so we all went to our parish school, St. Rose's. We did not know until after Susan's death that the St. Joseph Sisters had encouraged Mom to keep Susan there and had made a place for her.

She had difficulty with subjects related to math, yet she enjoyed reading. But Susan and the rest of us -- with our parents' encouragement -- paid as little attention to her limitations as possible. And by the time there were six of us siblings, with Barbara Jean and Eileen Rose, Susan's place in the family was well-established.

Though her life was cut short at 38 years of age, she had truly lived. We all went ice-skating together, barely noticing that Susan always wore double-runner skates.

She rode bikes with us, too, but for quite a few years, hers was a very large purple tricycle that Dad had found for her. (Much later, Susan finally mastered a two-wheeler.) What a comment on our neighborhood and the times that no one made fun of her for riding that big tricycle! Our dear sister also loved to swim.

Susan relished holidays and a good party, her own birthday party in particular. Each year Mom ensured that her birthday was grandly celebrated. Susan also enjoyed family outings and vacations.

She took piano lessons, though she played the same pieces over and over. She loved to talk on the telephone, especially to neighbors, and corresponded with friends and relatives all over the country.

Susan dearly loved her dog, Blarney. When she received him as a gift, he was "wild," but under her care, Blarney quickly developed a calm disposition. The two became devoted to one another.

A best friend to each of us siblings, Susan later became a "second mom" to, our own children.

But Susan's life was not without pain, especially her later life. Susan's blue eyes always took the measure of a person: She could detect a friend, and was devastated by those who did not understand.

A few months before her sudden death, when none of us knew she was sick and she still proudly rode a city bus to her dearly loved job, another passenger rebuked her: "You are the ugliest person I have ever seen."

Perhaps that passenger is one of the many people today who believe persons with disabilities don't count for much. Certainly that passenger could not known that, while Susan might never ride that bus again and would feel deeply hurt, she would nevertheless continue to turn to God and to love life.

She would even write about the incident in a journal she was keeping, which we didn't even know about until after she died. She wrote: "God created all of us because He has a plan for all of us humans."

In June 1989, Susan suffered from what seemed at first to be flu symptoms. During the night, family members took her to the emergency room. But the doctors and nurses there seemed dismissive of Susan and her symptoms, so they sent her home.

Three days later, she was admitted to the hospital by a family physician, and for a week she was treated as if she were suffering from anxiety due to Dad's recent death.

Susan didn't let her illness or her suffering get in the way of her natural kindness. From her many cards, gifts, balloons and flowers, she selected items to give to new patients. The traffic in her hospital room gave testimony to the many lives she had touched -- family, friends and co-workers.

After a difficult week, a routine biopsy on an enlarged lymph gland revealed cancer. Susan smiled her beautiful smile and hoped to get well.

We all made sure someone was with her almost constantly during her hospital stay. Susan's parish priest, Father Kelly, along with Deacon Ed, came almost daily to minister to her. She was anointed and received holy Communion.

While she expressed sadness at the possibility of dying at only 38 years of age, she also said she "felt God calling." Susan gave death a good fight nonetheless. She signed the papers for radiation and began treatments. She even joke about what color wig she might wear.

But the radiation had to be discontinued. The miracle we had hoped for did not come. From diagnosis to death, Susan showed us what dying with dignity truly means.

She shared thoughts and messages of love to be given to family and friends, and she was deeply concerned for Mom, so recently widowed.

Susan remained conscious until the last hours of her life. She dictated what she wanted done with her earthly treasures, her music-box collection and "Little House on the Prairie" books.

She made sure that each of her three nieces and six nephews would have a special remembrance from her. She returned her beloved dog to Eileen Rose, our youngest sibling, who had provided so much care for Susan during her adult life. Susan even voiced requests concerning her own funeral Mass, and her wish that she be buried next to Dad.

Susan was not lying in that hospital bed without great suffering. That is the amazing part. But she continued to interact with people, to pray, to receive holy Communion, then she finally stopped breathing on July 22, 1989.

Ten family members surrounded Susan at her death. Mom and all four sisters were there, as were uncles and aunts, cousins, and nieces and nephews. Susan, who had given so much of herself to all of us, died surrounded by love and prayer.

Our sister Susan enriched our family more than we could ever imagine. We didn't realize that she had been keeping a journal over a period of years. If we had, we would have better understood what Susan did: that the soul is not limited by the body, or even an IQ score.

A few days after Susan's death, Eileen Rose found the journal. Among the many thoughts and feelings Susan expressed in it was this: "God made me different in many way[s], to live a good life. If we were all the same it would be a[n] odd world."

Susan lived that good life. We are blessed to call her our sister.