By Mary Alice Donaldson
“The best lives are riddled with ambiguities and lined with shadows. Each of them is a story about grace. To tell our own stories as stories about grace rather than stories about success or failure is to tell them more truly. That truth can set us free.”
Word by Word - Marilyn McEntyre
For a number of years I have been trying to write the story of my sister Elizabeth’s life and its impact on mine and all who knew her.
When Elizabeth was born with Down syndrome in 1957, the prognosis given to our parents was quite grim, “she may never sit up, walk or talk,” with the advice to immediately put her on our state institution’s wait list. The doctors were unable to give any words of hope to my parents.
The contrast between my birth at Johns Hopkins four years earlier where my mom was a beloved medical social worker was stark. Our mom was given medicine to stop her milk without her permission. Elizabeth was not brought to her room following delivery for over 24 hours. Elizabeth had no health issues, just that troubling extra chromosome.
Years later when my mom was reflecting on that first week of Elizabeth’s life in the hospital, she shared that in a phone conversation with me I had asked for mom to “give Elizabeth a kiss from me.” Mom was shocked to realize that she had not yet kissed Elizabeth. She quickly rectified that … and believe me when I say that Elizabeth then received more hugs and kisses daily than many people receive in a lifetime.
How does one measure a life well lived?
Elizabeth exceeded all expectations.
She shared a compliment or kind word in every conversation … ask my husband about her affirmation of his ability to push the button to open the garage from the car … we still smile at that memory. She learned to bake bread and help prepare meals, drew wonderful pictures and wrote frequent letters, participated in the Special Olympics (running, skiing and bowling) and was a meticulous and diligent employee in three sheltered workshops. Elizabeth loved to square dance, studied the snare drum, sang in choirs, volunteered in her church nursery and especially adored her nephew and niece. How she would have loved to have held their children.
During the last four years of Elizabeth’s life, she experienced a rapid decline with early onset Alzheimer’s. Frequent and severe seizures tapped her strength. During her final three weeks on our planet, our daughter, Annie, flew to Pittsburgh from Alaska to assist me in providing care to Elizabeth in our home with hospice support. Over and over again as we were caring for her needs, Elizabeth would whisper, “I love you, Thank you, Kiss me.”
Throughout my sister’s 56 years, her pastors and Sunday school teachers became dearest and lifelong friends. Elizabeth’s memorial service in 2012 was packed with folks who had known and loved Elizabeth for decades. All those gathered sang her favorite hymns. Three pastors gave tributes through cascading tears. Her Bible was well worn. She left notebooks full of scripture verses that she had carefully copied. After the service, a lovely young woman who had grown up in our church sought me out and said with regret, “I wish I had gotten to know Elizabeth better.”
Our son, Loy, has worked with the life skills class at Service High School for over 14 years. I delight in hearing about the incredible partner’s club, wheelchair soccer, basketball and the exuberant participation in the Special Olympics Polar Plunge. Aunt Elizabeth had a significant impact on our son’s life.
Remember to not dismiss someone who seems limited by a perceived disability … their gifts to you may be life changing if you just take the time to truly get to know their hearts.
Mary Alice Donaldson and her husband David are retired longtime Anchorage School District music teachers who remain active playing their instruments in our community. They renewed their membership to St. John in 2015. maryalicedonaldson@gmail.com