Remembering Megan and Shivawin

A Talk by Rita Wolfe
Parent of Two Terminally Ill Children

Summary by: Jill Cahoon, Member, REAL Women Affiliate
Alberta Federation of Women United for Families (AFWUF)

As Rita Wolfe cradled her newborn she resolved to stand between her child and any harm that could come to it. Little did she know in what ways that resolve would be tested to the ultimate in the months and years to come. Her story portrays the impact of a mother's love when that love is motivated and empowered by a deep faith in God.

Growing up in a family of eight children in small town Saskatchewan, Rita was nurtured and surrounded by an atmosphere of faith and prayer. By the time she was in her thirties, happily married, she was already the mother of four beautiful daughters. Megan was the eldest, but by the age of six, began showing some disturbing symptoms of lack of coordination which would become more alarming as time went by, in her piano and dance lessons and her school work.

In seeking a medical opinion, the neurologist initially suspected a brain tumour. Because there was some urgency in making a definite diagnosis, the parents, with their daughter, traveled to Minneapolis for an MRI. Friends and neighbours responded with prayer support and assistance in financing the trip. The MRI disclosed a different diagnosis, even more alarming for the young parents. It was determined that Megan had Nieman-Pich Type C, a hereditary disease.

The prognosis was devastating. She would gradually lose physical coordination, the ability to swallow, talk, bowel and bladder control. As Megan became weaker over a period of years, her courage and strength were a constant inspiration to her family and friends. She loved herself and accepted who and what she was. "The disabled in our society teach us so much. We need each other," said Rita.

By March, 1997, just before her 15th birthday, Megan had to be hospitalized as she was experiencing seizures, and her stomach function had stopped. Soon after, her parents stood by her deathbed as they against experienced God's peace in the midst of deep grief.

Being aware of the hereditary nature of the disease, the Wolfe's had all their children tested, including a son born after Megan became ill. The test results showed that their second daughter, Shivawin, would also succumb to this relentless disease.

It was at this time that the Latimer case in Saskatchewan was in the news. This was "an incredibly haunting experience" for their family as Shivawin mimicked the difficulties of the Latimer child. The Latimer case focused on the hopelessness of a father who deliberately ended the life of his disable daughter, as he put it, "out of love." In the face of media censorship against he pro-life view, and deeply opposed to Latimer's actions, Rita felt constrained to take a public position.

She wrote letters to the papers which were not printed. When questioned, editors said that they had received hundreds of similar letters. With Shivawin already confined to a wheelchair, Rita decided to take her to the Latimer trial in North Battleford. There she faced the hostile media who confronted her with questions such as, "How did it feel to use your child as a prop?" With God-given courage, the presence of mother and daughter gave hope and inspiration to other parents with handicapped children.

In April, 1999, shortly after her 15th birthday, Shivawin died. The presence of 1,000
people at her funeral testified to the extent which their courageous lives had inspired many other families. The miracle was that they could survive 10 years in this crucible of affliction with their faith and family stronger than ever. "We still have three happy, gifted children," concluded Rita, as her listeners responded with a standing ovation.

Rita's faith and courage brought joy to all who heard her speak at the conference.

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