Like many moms-to-be, Pat Little-Upah spent the better part of her first pregnancy imagining life with baby. As her belly grew, her dreams did, too.
Pat just knew this child would be a girl, perfect in every way, and she looked forward to shopping excursions, proms, a wedding — all those things that mothers and daughters share.
On Jan. 20, 1973, Lisa was born 3 weeks prematurely and weighing in at about 4 pounds, prompting the medical team at the small rural hospital in Circleville, Ohio, to whisk her away to an incubator. Lisa had a hole in her heart and difficulty feeding.
Pat was shocked to learn three days later that Lisa had been diagnosed with Down syndrome and would be transferred to a neonatal intensive-care unit in Columbus.
“They said, ‘You might have to put her in an institution,’ and that was kind of it,” Little-Upah, of Tempe, said. “I had never even had an interaction with a person with Down syndrome.”
The first night after Pat was discharged from the hospital, she sat up all night in her rocking chair, thinking about the plans she’d made.
“And in some wayS, I buried the child I dreamed about for nine months, and I accepted the child that I had been given,” she said.
Eight years later, Lisa would save her mother’s life. More on that later.
A life of service to country
Pat grew up in a military family. Her father was in the Navy, her mother in the Army, and both served in World War II.
“My mom was my role model,” she said. “She was an amazing nurse, and I wanted to be just like her.”
After nursing school, Pat enlisted in the Army and was on active duty in Vietnam in 1968, caring for wounded American soldiers and Vietnamese civilians. After 10 years in the military, she became an ER nurse in Cleveland and then went into psychiatric nursing.
Pat moved to Tempe in 1981 and began building a career with Banner Health. Then, in 1991, while in the Army Reserve, she was activated to serve for six months during Operation Desert Storm. That required creating a patchwork of care for Lisa among her father, her stepfather and her teachers.
“I went off to war, and, of course, Lisa didn’t understand,” Pat said. “When I came back, she refused to see me at first.”
After serving for 30 years in the Army Nurse Corps, Pat retired in 2004 with the rank of colonel. She has since collected numerous civilian and military awards, including the Armed Forces’ Legion of Merit in 2008 and the 2012 YWCA Women in Leadership Award for military service. In 2014, she was inducted into the Arizona Veterans Hall of Fame, and is vice president of its society.
Pat retired in 2012 after 10 years as the CEO of Banner Behavioral Health Hospital, the Banner Psychiatric Center and the Wendy Paine O’Brien Adolescent Center.
Since then, she’s been volunteering and developing programs for local veterans’ organizations, such as Honor House, of which she is board president, and on the board of Veterans First. She has served on committees to improve services at the VA Medical Center in Phoenix, and is working to build a Fisher House in Phoenix, where family members of veterans hospitalized at the center may stay.
“So many veterans from Vietnam, Desert Storm, Iraq, Afghanistan, they don’t know where to turn sometimes,” Pat said.
She noted that homelessness and suicide, especially, are on the rise.
A life of service to individuals with disabilities
She also volunteers at The Centers of Habilitation in Tempe, which provides daily social, recreational and educational opportunities to adults with developmental and physical disabilities.
Lisa, now 48, she spends her weekdays at the center, working on independent skills and enjoying community activities. She looks forward to seeing her friends and teachers, and to being in the sensory garden. It’s a beautiful shady space with flowering trees, raised garden beds, a water feature, swings, hanging ribbons and wall murals that guests helped paint.
“Many individuals with disabilities find a sense of calm when out in nature,” Pat said. “Lisa particularly likes the swing. She’s always liked to rock to music.”
The center was closed for much of the past year’s COVID-19 pandemic, and that was challenging for Pat and, especially, for Lisa, who doesn’t understand the concept of time.
“I would drive her to the center and through the parking lot so she could see that the backyard was empty, and that there were no cars or clients, and she would understand then,” Pat said.
Since the center reopened on April 1, Lisa has become more like her old self, more talkative and social. She loves music, and doesn’t think twice about grabbing a live microphone in the center to sing “God Bless America.” Other favorites — anything by Whitney Houston, “C is for Cookie” by Sesame Street’s Cookie Monster, and “You are my Sunshine,” which mom and daughter sang all the time years ago.
A life of service to Lisa
Pat feels blessed that Lisa has been relatively healthy all her life, that the hole in her heart spontaneously closed in toddlerhood, and that she recently survived pneumonia after being placed on hospice care.
“God truly blessed us when He allowed her to live and continue to be part of our lives and continue to grow old together,” she said.
As a child, Lisa surprised her mother every day, not fitting the mold of the quiet, docile individual with Down syndrome that Pat had read about.
“She was a very loving child, but she was mercurial, and she had some ups and downs and real struggles.”
Lisa attended special-needs schools in Ohio, Tempe and Phoenix, graduated from high school at 22, and moved into a group home a year later.
Placing her there was one of the hardest things Pat ever did.
“When you have a child who cannot speak and defend herself, and you put them into the care of essentially strangers, it is very difficult. You worry, you don’t know what will happen, you don’t know if you made the right decision for your child or not,” she said.
“Lisa now lives in a group home where she has 24/7 care, with two other adult women, who are like big sisters to her. She has chores, independence, friends.”
On Mother’s Day, as she does every year, Pat will celebrate her daughter’s milestones — mountaintops, she calls them. A visit to the park is likely because Lisa loves listening to music and watching kids on the playground.
And Pat undoubtedly will think, as she does every Mother’s Day, of D.J., her second born, a boy, born a year after Lisa. He was struck by a car and killed when he was just 7 years old.
And this is how Lisa saved her mother.
“I look at Lisa,” Pat said. “After my son was killed, I was emotionally wrecked, and at times very depressed. I didn’t want to get out of bed, I didn’t want to continue, but I had to, because of Lisa. At times, she would hug me and sing, ‘Jesus Loves Me.’ I needed her, and she needed me.”
None of this was part of Pat plan’s for motherhood, but she doesn’t dwell on what could have been.
“You celebrate more of the little things. You realize how precious life is, particularly when you’ve also lost a child,” she said. “Every moment is precious.”