On the “About Me” page, I mention that I am involved with several organizations devoted to serving individuals with intellectual disabilities. A week ago, a member of one of those organizations passed away. Her name was Donna Lee Preston, and she lived an unexpected life.
Donna was born in another era for individuals with Down syndrome. She was raised in a time when institutionalization was the medically-recommended option following birth and before the modern era of early intervention, inclusion in public schools, and opportunities for post-secondary education and community-based living. But that is what made her life all the more unexpected.
Norman is Donna’s older brother by 23 years. He told me how, when he returned home from serving in World War II, his mother told him she was expecting. After her delivery, the doctor told her parents that they should not expect Donna to live long. Factually, that was correct medical advice. At the turn of the 20th Century, the average life span for an individual with Down syndrome was nine years old; in the 1980’s, it was mid-twenties; today, it is 60 and rising. When she was born, no one would have expected Donna to live 64 years—or how she lived those years.
Bucking the trend of institutionalization, Donna’s parents brought her home. As George Will put it following the birth of his son with Down syndrome, “that is what parents do with newborns.”
When Donna was growing up federally-mandated early intervention was not even an idea. Unlike my daughter, who received physical, speech, and occupational therapy, along with developmental intervention and nutritional counseling, Donna’s parents did not have any of that. But, that did not keep Donna from thriving.
When Donna reached school-age, the choices were limited. There was one—one—school in all of Jefferson County she could attend. To get there would require Donna to cross a well-traveled street, change buses at a busy hub, and then be dropped off at an intersection of two more busy streets. Donna’s mother Freeda chose to educate Donna at home. And, she did.
For her entire school-age years, Donna was “home-schooled” before that term was popular. Freeda taught Donna to read and write. While the values of currency eluded Donna, the appreciation for money, in general, did not (more on that in a bit).
Moreover, Freeda ensured that Donna got to experience the world. At her visitation, a video showed Donna visiting family in Florida and going on all sorts of trips with her mom via airplane, since Freeda did not even drive. Again, the unexpected experience of travel, given that Donna’s surviving parent had limited means of independent travel in her own hometown.
Though already having a full life, Donna really flourished once she left the comfort of the only home she had known. Though her siblings and niece and nephews had supported Donna moving out of her mother’s home for some time, her mother would not hear of it—and for entirely justifiable reasons. Imagine the world outside the safety of home when Donna was born. Abuses were occurring at institutions throughout the United States. Freeda was not about to expose her youngest daughter to such risks.
Times had changed, however, by the time Freeda received her final reward. The decision of what community Donna would move into fell to her brother Norman. Since the 1970’s, he had heard of the quality care provided by Cedar Lake. Then, it was simply Cedar Lake Lodge. By the time Donna was in need of its services, Cedar Lake had expanded into community living. And, so, that is where Donna went to live. And, live she did.
Donna held a job, participated in activities at the YMCA, and enjoyed the company of her roommates. As her niece emphasized, Donna loved her job—and her paycheck. Donna would always say, “I have to go to work so I can get my check!”
Even when Donna began to slow down, her family extolled the quality of care she received. Wheelchair-bound, Donna was moved from the community-based residence to Cedar Lake Lodge. There, she made many friends with fellow residents and, particularly, with the staff. Norman shared how on Donna’s last day there must have been at least 60 staff members who visited Donna. To hold her hand. To give her a kiss. To say good-bye.
On her final day, in addition to those many staff that visited, Donna was surrounded by her family and key staff members with Cedar Lake. Martina, Vice President of Community Services, spent the whole day with Donna. Mark, the chaplain, was there, along with his assistant Katie, who sang “Amazing Grace” at Donna’s bedside. Donna’s final moments were spent surrounded by those who loved her.
This all would have been very surprising not only to Donna’s parents on the day she was born, but also the doctor who predicted she would not live long, and the many in society who could not envision such a full life: sending handwritten birthday cards to relatives, no matter how distant; enjoying listening to the Beatles; being active in church; having a job; and, traveling all over. And, yet, this was the life Donna lived.
Donna lived an unexpected life. No one could have predicted the life that she did lead—no one ever can about any life. Donna Lee Preston, RIP.
Per Donna’s obituary, the family has asked that expressions of sympathy be made in the form of contributions to Cedar Lake Lodge, via mail at 3301 Jericho Rd., LaGrange, KY, 40031 or via online.
Postscript: I serve on the board of directors for Cedar Lake Lodge in an unpaid, volunteer position.
Question: What stories do you know of someone living an unexpected life?