A Mother’s View
Author Judi Markowitz Offers A Peek into Her World of Raising A Child With A Rare Disorder – She is both a miracle and a medical marvel — Lindsay Weiner, 34, of Huntington Woods is also a testament to the strength and healing power of a mother’s love. Lindsay is believed to be the oldest person in the world with Marshall-Smith Syndrome (MSS), a rare, incurable condition marked by multiple birth defects (advanced bone age, respiratory difficulties, and mental and physical impairments). Only about 23 people worldwide are currently living with the diagnosis Lindsay’s mother, Judi Markowitz, writes about in her newly released memoir, The View from Four Foot Two (Sunbury Press).
Markowitz, 62, is a 12th grade English teacher at Berkley High School; she also teaches a Detroit film class at CASA (Center for Advanced Studies and the Arts) in Oak Park. She was 27 years old when Lindsay was born in 1979. Judi also has three sons, Todd, 33, Chad, 29, and Eli, 25, who were all healthy babies.
“There are 30 million people around the world with syndromes you have never heard of,” Markowitz explains in the book’s introduction. “And, there are 30 million mothers who, like me, were informed of the syndrome their baby was born with in words that sounded something like this: Your child is not normal. Blah, blah, blah. Your child will be different from all the other children. Blah, blah, blah. Those eyes you’re staring into right now belong to someone who’s damaged. It is not your fault. Or, maybe it is your fault. Blah, blah, blah. You have just delivered a functioning baby, but you have also delivered yourself a life sentence.”
Doctors told Markowitz most people born with Marshall-Smith Syndrome don’t live past age 2. But Lindsay is living proof that medical professionals don’t always have all the answers. Judi says despite the overwhelming diagnosis, she proceeded with life as if Lindsay wasn’t disabled, determined to make each day beautiful for her child. She temporarily stopped teaching and focused on her daughter’s well-being.
“Don’t think I was in denial,” she writes. “We all have our battles; some are minor and others are fought on unforgiving terrain. We also have choices … For me, it basically boiled down to two: I could allow myself to be consumed with grief, or I could face the hard, cold facts and move forward. There was no gray area here. I chose to enjoy life with Lindsay, whatever that might hold.”
Over the years, Markowitz has had to overcome some seemingly insurmountable challenges. She’s dealt with grief, anger, pain and fear, the breakup of her first marriage, the trials and tribulations of finding the right doctors for Lindsay, and the cruelty of strangers.
“It took me a long time to reconcile my outrage at the ignorance of people, at their uncomfortable stares and rude comments,” she says. “This didn’t happen overnight.”
She also has experienced incredible joys — marrying Jeffrey Markowitz (her best friend in high school whom she dated in college), watching her children grow, taking family trips and carving out a life that works for all of them.
“To us, this is our normal,” Jeffrey explains. “We’ve never looked at it as a burden the way other people might.”
Judi adds, her sons grew up with acceptance, love and compassion for their sister and their actions taught others to be more insightful.
“Lindsay helps me to look at people with understanding and a nonjudgmental attitude,” Chad says.
Judi’s eldest son, Todd, a rabbi in Israel, says his relationship with his sister helped him find his calling.
“Through contemplation of my sister’s condition and circumstance in life, I became profoundly cognizant of Divine providence, gaining an understanding that HaShem alone runs the world,” he says. “My mother also lives with these ideals.”
In the book, Markowitz recounts her own deeply personal religious journey. Initially, she became disillusioned with Judaism and lost faith. She looked at other religions including Jehovah’s Witnesses and Jews for Jesus, but grew disillusioned with these groups as well and returned to her Jewish roots.
At one point she sought answers in Rabbi Harold Kushner’s 1981 book, When Bad Things Happen to Good People. The rabbi’s son, Aaron, was born with Progeria, a rare genetic condition that causes children to age rapidly and to die young.
“[Rabbi Kushner] deviated from traditional beliefs and came to the conclusion that God does not let these things happen, that he is limited,” she says. “But, after soul searching for many years, I simply could not abandon the notion of a God who is in total control of this universe, whether we like it or not. Now, 30 years later, I have finally surrendered to the belief that I may not know God’s purpose, but I do know that God is with me and my family.”
Markowitz and her family belonged to Temple Emanu-El in Oak Park where Lindsay had a bat mitzvah. They now attend the Woodward Avenue Shul in Royal Oak or Aish HaTorah in Oak Park. She says she’s become more religious over time.
“I truly believe that due to all of my prayers — and anyone else who prayed for Lindsay — that I was given a miracle,” she writes. “It just took a while to recognize this. There were only 18 cases of MSS reported in the world’s medical literature by 1982, when Lindsay turned 5 — and she was alive. By beating these statistics, God had granted her the opportunity to be something special and that was the miracle.”
Life With Lindsay
Markowitz describes her daughter as “energetic” and says she loves to be on the go. She says her family has worked together to give Lindsay an action-packed life. Lindsay has taken ice skating lessons with an aluminum walker, attempted horseback riding, participated in a bowling league using special adaptive equipment, and traveled with her family to more places than most able-bodied people.
She constantly requires one-on-one assistance and cannot read or write, but has attended various school programs, including one at Andover High School in Bloomfield Township. Lindsay graduated from Wing Lake Developmental Center for impaired students.
“She is non-verbal but she can answer questions by shaking her head ‘yes’ or ‘no,’” Markowitz explains. “Lindsay will also walk us to her desired location in order for her needs to be met. Nothing makes her happier than sitting in the front seat of the car and heading out to go shopping, visit friends and family, frequent a local restaurant or take in a movie.”
Lindsay attends a day program in West Bloomfield and also has respite care workers who assist her. Because of her advanced bone age, she stopped growing early; as the book’s title indicates, she’s 4-foot 2. She underwent a lifesaving tracheostomy (surgery to create an opening through the neck into the windpipe) when her airway was closing off and two hip replacement surgeries.
Researchers are still looking for the mysterious origins of Marshall-Smith Syndrome, once believed to be a spontaneous occurrence. Judi has traveled to the Netherlands to meet with a geneticist and multiple families of children with the disorder. A gene was recently discovered that might be the cause of the syndrome. A portion of the profits from the sale of her book, which Markowitz wrote off-and-on over the course of 20 years, will be donated to the Marshall-Smith Research Foundation in the Netherlands.
“I’m very glad and proud that Judi could write this story,” Jeffrey says. “We have a unique situation and the love and energy in our household has helped Lindsay to make considerable progress through the years.”
While the family has come a long way, they still constantly battle the fear of the unknown.
“The weight of MSS is daunting, but now I can’t imagine life any other way,” Judi tells her readers. “When Lindsay smiles with delight and her face glows with happiness or when she places her small hand in mine as we walk together, I am truly filled with joy … We certainly know there is no crystal ball to foretell what life has in store for us, but we do know that we have been witness to a miracle on several fronts.
“Jeffrey and I have nothing but profound gratitude for the gifts that Lindsay has brought to our family; we appreciate the best of each day and always have a prayer for tomorrow.” ■
Robin Schwartz | Contributing Writer
The View from Four Foot Two is available at Sunburypress.com, Amazon.com (paperback and Kindle), BarnesandNoble.com (paperback and Nook), and the Book Beat in Oak Park ($16.95).