‘My One Big Thing’: A Temecula Man Recalls How 2 Women Shaped His Life

TEMECULA, CA — Ed Hubler’s 79th birthday gift on Oct. 8 will be the same as it has been for decades: His daughter Rita.

Oct. 8 is Rita’s birthday, too — her 60th. Hubler’s entire adulthood has been wrapped up in Rita.

“I believe that in our lifetime we all have one thing, one big thing that truly defines us, one thing that changes who we are, one thing that alters our entire existence,” Hubler told Patch. “And my one big thing was the birth of our daughter Rita, who was born on my 19th birthday.”

Rita is profoundly disabled. She can’t see or hear. Her intellectual disability is severe.

Ed and Judy Hubler knew something might be wrong at the 12-week prenatal appointment when a blood test confirmed she tested positive for Rubella, or German measles.

At that time, “the truth wasn’t really known about what happens to babies in the womb during the first trimester when the mother contracts German,” Ed said.

A Cruel World Awaited

Judy’s pregnancy ran long.

“She didn’t want to come out, so we had to kick her out at 40 weeks, but do you blame her?” Ed said. “This world can be brutal. Why leave a nice, safe bubble to come into a cold, hard world?”

Ed says that in retrospect. The world has been all of that and more to Rita, he said.

Rita fought for her first breath. It took the medical team at St. Mary’s Hospital in Long Beach 45 seconds to coax it out of her. “Even then, she wasn’t taking breaths fully on her own,” Ed said. “They had to help her.”

Judy barely saw her daughter as she was rushed past to the NICU.

“As they rushed past me, I was thinking, ‘What is going on?’” Ed said. “When I was finally able to see my wife, she had tears streaming down her cheeks. She and I did not know why my wife was not holding our daughter after her birth. My wife carried this beautiful baby girl, gave her life, and now she was wondering, ‘What if I never get to meet her? What if she doesn’t make it?’”

Seeking answers — any information, really — Ed showed up at the NICU. In the “coldest bedside manner alive,” the doctor explained Rita had been diagnosed with congenital Rubella syndrome, or CRS. Some women miscarry; in other cases, the baby doesn’t survive long after birth.\

“If she lives, she will stop mentally developing at 2 months old, and if you are lucky, she will live maybe 6 months to a year at the most, but with very little quality of life Here is some paperwork on the diagnosis. Any questions?” Ed recalled the doctor saying.

“I could feel the walls closing in on me,” he said. “How was I going to tell my wife, the mother of our first child?”

Rita remained in the NICU for 16 weeks. Judy remained at her side, then and during the 4½ years Rita lived in their home.

‘Her Love Was Unconditional’

Ed and Judy ran off and got married when they were 18 and 16. They met when Judy was 14. Her zest for life was a powerful magnet. Ed said he fell in love with Judy Mayfield the first moment he saw her

Being a wife and mother was all she ever wanted. Her own childhood had been painful. She was unplanned, and her emotionally cruel mother always introduced her as “a mistake,” Ed said. Not only that, Judy was born during the winter holiday season, on Dec. 29, and never had a separate celebration, or even a birthday gift, until she and Ed started dating.

The last thing Judy would say about her and Ed’s daughter was that she was a “mistake,” though plenty of other people would.

“Her love was unconditional,” Ed said. “In her heart, she was going to raise her child.”

Rita defied the doctors’ expectations.

“Our very small, strong, young daughter eventually learned to eat, which they said she wouldn’t, because of my wife’s constant love and touching,” Ed said. “Our daughter showed them not to put labels on her, or tell her what she could or could not do. From day one, she had inherited my wife’s strong personality, stamina and the will to survive.”

Doctors and researchers at UCLA Health were astounded when Rita reached her first birthday. When she turned 2, “they couldn’t believe it,” Ed said.

“When she turned 3, they were absolutely going crazy,” he said. “This beautiful little girl was still alive.”

‘What Is Wrong With Your Baby?’

Recalling the day when Rita was fully diagnosed at about 6 months and doctors said she was unlikely to live past her first birthday, “we decided that we would not let this tear us down,” Ed said. “It just made us stronger for her.

“The times my wife and I sat on the couch with Rita either in my arms or her arms brought us closer together,” Ed said. “Rita did that for us. It didn’t separate us, or anything else; it brought all three of us closer together.”

It wasn’t the day-to-day care of her daughter that exacted such a toll on Judy, but the whispering, stares and judgments of others.

When she took Rita to town in her stroller, other mothers herded their children way. She faced a barrage of unsolicited advice and prying questions, such as, “What is wrong with your baby?” Ed said.

“Because Rita looked different, other mothers kept their children away, rather than trying to explain to them that there are children who are born with disabilities, and that not all children are born healthy,” Ed said.

Worse were the calls to authorities by neighbors who accused the Hublers of abusing their daughter. Rita was prone to seizures, and “it wasn’t uncommon to have the Long Beach police pounding on our door at 3 or 4 in the morning,” Ed said.

It all took a toll on Judy. Her psychologist urged her to leave Rita with caregivers long enough to go out to dinner with Ed.

“We could see through the window that the staff was taking care of her,” Ed said. “It was one of the best dinner since Rita was born, just the two of us.”

Later, the psychologist recommended an overnight stay. That separation left Judy in tears.

‘The Hardest, Best Decision’

When Rita was about 4½, Ed and Judy had to make the difficult decision that they needed help and moved her to a group home in Beaumont, where she lives today.

“It was the hardest, best decision we ever made,” he said.

Ed and Judy were satisfied Rita would be well cared for at the Beaumont facility.

“These people who work in these facilities, who dedicate their lives to the care of these individuals, we ought to thank them,” Ed said. “It’s a thankless job, to be quite honest, but they work they do and the care they give is unbelievable.”

Sometimes a person has to dig deep to find love returned.

When he visits Rita, Ed strokes her cheeks. That’s a technique Judy used to calm her seizures when she was a baby.

“It’s a small thing that is everything,” Ed said. “In my mind, I see her eyes light up. She knows her daddy is there.

“I believe disabled people, especially Rita, know love,” he continued. “The care these children require — especially in Rita’s case because she can’t talk, can’t tell you what she needs,” Ed said. “From your inner strength, you learn by her behavior what she wants — love, being cuddled, the simple things that you realize, if you pay attention, just by being with these people.”

About the time Rita moved to the group home, Judy began to yearn for another baby. Their son Brian was born when Rita was 9, without the challenges of his sister. It didn’t make Rita “less than,” as some people had been determined to define her.

Judy died in January 2018 after a two-year battle with pancreatic cancer. She and Ed had been married for nearly 53 years.

The question still comes up. Should children like Rita have never been born?

“I am a Christian,” Hubler said. “I believe we shouldn’t abort babies because we’re afraid they might have some disability. Our life with Rita has taught us more than we could ever have imagined.”

About Patch People

Patch People is a recurring feature telling the stories of readers, including their interests, passions, challenges, triumphs and seminal moments that resulted in profound change, with a goal of making us all feel a bit more connected. Or, you may want to talk about something entirely different, and that’s OK, too. Readers can submit their stories through this form or by email to beth.dalbey@patch.com.

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