At 27, Judi was elated about giving birth. It was her first child. She had a naturally cheery disposition.
But in the delivery room at Sinai Hospital on W. Outer Drive in Detroit, something didn’t seem quite right with the new baby, Lindsay.
“It was pretty quiet in the delivery room,” recalled Judi Markowitz, of Huntington Woods, now 62. "The doctors said something was wrong, but they weren’t exactly sure what. I was horrified.”
“The words weren’t making sense,” she would later write in her just released book, “The View From Four Foot Two,” a title that refers to her daughter’s adult height. “The only birth defect I knew about back then was Down syndrome -- of course in 1979, everyone was less politically correct and I asked my doctor ‘Is my baby a mongoloid?’ The doctor said she didn’t seem to have the shape of a down syndrome baby but they needed to do tests.”
Judi Markowitz with husband Jeff and daughter Lindsay
What followed was a lifetime of challenges: Tests, surgeries and physical therapy, learning about a rare disease called Marshall-Smith Syndrome, dealing with insensitive and incompetent doctors (some of whom she ended up suing unsuccessfully), being told her daughter would likely never live beyond two, hearing adults and children make incredibly hurtful remarks, and ultimately loving unconditionally.
Today, Lindsay is 34. She’s believed to be the oldest person in the world out of about 23 living people who have been diagnosed with Marshall-Smith Syndrome, an extremely rare condition that includes multiple birth defects, advanced bone age, respiratory difficulties and mental and physical impairments.
Anxious to tell her story, Judi Markowitz, an English teacher at Berkley High School, tried for about two decades to write a book. After many false starts, she succeeded, and in January published “The View From Four Foot Two,” published by Sunbury Press.
“I just wanted people to know Lindsay’s unique situation and her life and our lives as it effected us, and that we really live a life,” Markowitz said.
“She’s definitely made me a better person. I think I’m more insightful, more intuitive. More responsible. When you have children you have to be responsible. But this is above and beyond and you just do it because you just love someone. Lindsay needs 24/7 care.”
Adds Jeff Markovitz, 63, her second husband who took to Lindsay as if he were the biological dad: “Lindsay’s not our burden. She ‘s our joy. The burden is the rest of life.”
Doesn't Speak
Lindsay doesn’t speak. She communicates with a nod of the head and gestures. She’s often happy, going on family outings, trips abroad, rides in the car.
“She likes going for walks," says Judi. "She likes shopping. She likes getting her nails done at school. She’s got great nails and she’ll show them off. It’s hysterical.”
But on the day her parents are being interviewed, she seems rather shy and introverted, uncomfortable and upset. It’s not clear if she finds it distasteful being the focus of the discussion or sitting with a stranger. As parents they try to be intuitive, but they don't always know what she's thinking.
“We don’t know how high her knowledge is,” says Jeff. “We’re not 100 percent sure of what she really knows. Sometimes we’re really surprised. I think there’s also manipulation. She’s definitely a lot smarter than she’s showing. She’s not showing all her cards.
Lindsay attends a special needs day program for adults in West Bloomfield called New Gateways.
During the week, Jeff and Judi get Lindsay ready to attend the program. Judi takes off to work at school. Jeff, who is retired, puts her on a van that takes her to the program. After school, Judi returns home to the mom role.
Jeff marvels at his wife’s energy.
“This is a full-time teacher, and with Lindsay, that’s a full time job,” Jeff says. “She’s a person who is really going 20 hours out of 24 hours a day. The commitment is incredible.”
From birth, the challenges mounted.
Judi said the doctors had no idea what the diagnosis was for Lindsay. So they started leafing through medical books to try and figure it out.
“It totally freaked me out,” she said. “It was a lesson in absurdity. They pulled out these books and they’re flipping pages. She was a noisy breather and they kept looking. ‘Does this match? Does that match?’ They knew nothing. It was really surreal.”
Finally, after a couple months, a radiologist at Mott Children’s Hospital in Ann Arbor figured out it was Marshall-Smith Syndrome. At the time, she read that no one with that diagnosis ever lived past two.
“I thought it was a death sentence,” she recalled. “ But I took the high road. If I don’t know anything and they don’t know anything, I have to take the high road.”
Jeff and Judi Markowitz in their kitchen in Huntington Woods
Judi, who was teaching at Novi Middle School, became a stay-at-home mom. Lindsay needed round the clock care to do the most basics: Eat, go to the bathroom, get dressed. After a few years, she started teaching part time and eventually worked her way up to full time again, splitting her day teaching English at Berkley High School and a Detroit film class at the Center for Advanced Studies and the Arts in Oak Park.
A Jew Who Turned to Jesus
After the birth of Lindsay, Judi started questioning why this had happened to her. She was Jewish, and grew up in Oak Park, a predominately Jewish suburb.
But she started wondering if “Jesus could heal my baby. I was grasping at anything -- after all, Jesus was Jewish, right?,” she wrote in her book.
“ The main thing I knew about the New Testament was that Jesus performed miracles....His name was now entered into my prayers as well, and I begged Jesus to save Lindsay.”
She said Jews for Jesus and Jehovah’s Witnesses came knocking on the door “at a time I was at my absolute lowest.”
“I might have been grasping at straws by speaking to them, but at least it appeared that I had new forces to help me and to help Lindsay.”
But she said after a year, she grew disillusioned with those groups and returned “to the familiarity of Judaism.”
In time, she said she and her then-husband Neil Weiner took a gamble and had more children. They went on to have three healthy boys, who are now grown.
Growing up, the brothers became very protective of their sister. Sometimes strangers would stare. Sometimes friends would make untoward remarks.
Judi recalled one time when the family went to the Huntington Woods pool and a friend of her oldest son, Todd, said Lindsay was ugly. Todd told his mom, who recalled saying “I just said ‘ignore him.’ Todd never played with that kid again.”
“A lot of times they wanted to stare people down if they starred at Lindsay,” Judi recalled. “They would and I would have to tell them ‘don’t do that. They have no information. They’re not educated. and your actions have to educate them.’”
Insults in the Medical Field
Even, in the medical field, things weren’t always that much better. While she was pregnant with her second child, she took Lindsay to Henry Ford Hospital in Detroit. A doctor brought one of his residents along, who looked at Judi and Lindsay and said: “I’m sure you’re hoping this won’t happen again.” They finally found a great doctor, Dr. Benn Gilmore, who performed a tracheotomy at Ford Hospital to help Lindsay breath at age 13 months.
But she sued two of Gilmore’s colleagues at Ford for malpractice, alleging poor and “lackadaiscal” care. But the case was tossed because there was there was no “standard of care” for children with this rare diagnosis.
“I was absolutely bewildered by this conclusion,” Judi wrote in her book.
Meanwhile, she found challenges in watching her friends’ healthy children grow up and celebrate different milestones, like graduating, driving and dating.
“Watching all those healthy kids reach their milestone was a killer for me,” she recalled. “Yet, I persevered and went to every single event. The children were the epitome of health and I marveled at this gift and wondered why Lindsay had been denied.”
The challenges of having a disabled child didn’t help her marriage with her high school sweetheart Neil Weiner. His job often took him on the road, and he seemed to find reason to extend his stays away from home.
After 20 years, the marriage ended.
“Neil and I did not survive the onslaught. Our boat gradually sank,” she wrote in her book.
“In our divorce agreement he was to spend every other weekend with all the children at his apartment,” she wrote. “As time went on, however, those weekend visits came to a screeching halt.”
After her divorce she started dating her now-husband Jeff Markowitz. They both went to Oak Park High and were friends. In college, they dated for some time.
Judi now had four children, one of them disabled. It wasn’t the most inviting scenario for a life-long bachelor who was 42. But that didn’t scare Jeff away.
“I was really in love forever, ever since I met her,” says Jeff. “I guess I was really willing to try anything.” The two married in 1997.
Judi says it took her several years to realize her prayers had really been answered.
In her book, she writes:
“I truly believe that due to all of my prayers -- and anyone else who prayed for Lindsay -- that I was given a miracle. It just took a while to recognize."
The book is available at The Book Beat in Oak Park, Sunbury Press, Barnes & Noble and Amazon.
