It's tough getting Shari Drake to talk about herself. Ask her how she felt about giving birth 24 years ago to a profoundly disabled baby boy and her answer is mostly bereft of emotion.
"I was scared," is how she'll sum up that paradigm shift in her life, which until then was the ordinary existence of a 26-year-old woman born, raised and educated in Norwich and who went on to marry, work and live in that city.
But ask about her son, Ryan O'Connell, who was born in 1985 with a rare disease that has left him medically and mentally fragile his entire life, and get ready for the emotional onslaught. Most of what will spill forth from Drake is filled with hope, love and that kind of single-minded protectiveness that only the mother of a special needs child can summon.
"Oh my gosh, Ryan! He's incredible. He's so funny. He's so smart. Did you know, he can talk with his eyes? He knows how to sign a bit, but mostly when he wants to talk to me, he does it with his eyes," she says with beaming maternal pride. "He's been like a miracle in my life."
Ryan was born with Cornelia de Lange Syndrome, a congenital disease that affects 1 in 10,000 babies and which causes both mental and physical developmental abnormalities and can cause a variety of medical problems.
Since his birth, Drake has been inexorably linked to her son in a way few other mothers can be. In just about every conversation with her the subject inevitably returns to Ryan. So attuned is Drake to him that she can, within seconds of seeing him for the first time in days, tell when he's not well. So accustomed is she to reading his eyes, his hand movements, his body position, that she can instantly ascertain his emotional state.
And every day of his life she has lived with the certain knowledge of something a mother fears most: Her child will die before her.
But each Sept. 11, when she marks Ryan's birthday and gets his cake, instead of thinking that it could be his last she reminds herself that Ryan wasn't even supposed to live long enough to celebrate his first birthday, let alone some two dozen more. At 24 Ryan, Drake says, is one of the oldest people in the state suffering from CdLS.
"He's like a little boy in an old man's body," she says.
Drake, now 50, got married in 1982 and a few years later she and her husband, James O'Connell, decided to have a baby. Most of her pregnancy, Drake says, was normal and she went about planning for her child's arrival in the usual way. She planned to take the requisite six weeks of maternity leave from her job as a secretary at Norwich Public Utilties and then, with childcare help from her family, return to work.
But during a routine exam in her seventh month, she says, her doctor told her something might be wrong.
"I thought he was kidding because he was always joking with me," Drake says.
She was sent to the UConn Health Center in Farmington for tests where doctors determined that there were abormalities with the fetus. She remembers little about the drive home that night except for the deep fear that had settled over her.
When she gave birth about two months later her baby was immediately whisked away for tests. It would take some time, she says, before they would even let her hold Ryan.
After he was diagnosed with CdLS, she says, doctors informed her he would likely not live to see his first birthday. That first year, she says, she and her husband focused on trying to feed Ryan and keep him happy. That was a tall order, she says, given that he was born with a cleft palette and, like many babies who suffer from CdLS, had an extreme case of reflux. Feeding him was nearly an insurmountable task, Drake says.
She had little time for recriminations or self pity, though there were dark hours, usually at night, she says, when she would cry or ask herself, "Why me?"
Ryan defied his doctors' predictions, however. He not only lived out that first year but began to thrive.
Like many other people born with CdLS, Ryan has a smaller than normal body, shortened arms and legs and tiny feet and hands. Walking was always difficult for him, though he can still do so today with the help of a walker. He has always slept in a bed with raised rails, much like a large crib, to protect him from falling out at night.
When he was about a year old he had a permanent feeding tube surgically implanted in his abdomen because of the difficulties he was having with chewing and swallowing food, a problem that makes him prone to contracting pneumonia.
By the age of four, Drake says, he had a vocabulary of about 20 words, loved to watch Sesame Street on television and had a hearty and infectious laugh. He attended a program at the Mystic Educational Center for children with special needs.
By then Drake had returned to her job as a dispatcher for Norwich Public Utilities. She and her first husband were living in a home on Sturtevant Street in Norwich and her mother, who lived just down the road, helped her care for Ryan.
She had no concept, she says, of how difficult it was to raise a special needs child.
"He was my first baby, so I had nothing to compare it to," she says. She simply made it a priority each day, she says, to make sure he was as happy as she could make him.
"I was going to make sure that I would be his advocate, that I would be his voice and that he would have everything he would ever want or need; that he would be happy."
Once Ryan survived his infancy, Drake says, doctors warned her that because he was so medically fragile he probably would not live to be a teenager.
But he defied the doctors' expectations again, though he was in and out of hospitals throughout his childhood with serious illnesses like pneumonia. As he grew into adulthood he continued to have numerous medical setbacks, Drake says, and there have been countless times when she thought she would lose him. He lost the ability to speak and uses his hands, and eyes, to communicate with his family.
In 2001 he underwent back surgery because his spine had become severely twisted. Prior to the surgery doctors warned Drake that Ryan might not survive and she took the precaution of making funeral arrangements "because I knew if that happened I would be a wreck." She stopped short, however, of buying him a burial site in a local cemetery.
Despite Ryan's grim medical prognosis and the emotional roller coaster they had been through since his birth, Drake says she and her husband decided to have another baby. They knew the chances of having a second special needs child were slim to none and Drake says she wanted to experience another kind of motherhood.
In May of 1991, the couple's daughter, Shailyn, was born. Drake recalls delivering her and being amazed at the perfectness of a healthy newborn.
"I just kept looking at her and saying 'It's a baby! It's a baby!' She was so beautiful."
A few years later Drake and her first husband divorced. She got remarried in October of 1996 to Maurice Drake. Her second husband, Drake says, has been an exceptional stepfather to her children and has been especially devoted to Ryan.
As he neared adulthood, Ryan has had significant medical issues, the most recent and serious was in January when he suffered a twisted bowel, a common and sometimes fatal ailment for people with his disease. He was rushed to Hartford Hospital where he stopped breathing at one point. Drake remembers being at his bedside and sobbing before someone pointed out that Ryan was breathing again.
After that episode Drake secured a burial spot for his cremated ashes in a newly created area inside Grace Episcopal Church in Norwich, where her family and Ryan have been parishioners all their lives.
In 2003, after she was hospitalized for a week with pneumonia and was out of work for several weeks more with the illness, Ryan had to be placed in a special care facility in New Britain.
While she had always vehemently opposed the idea of placing her son in a group home, her illness, Ryan says, made her realize her own vulnerability. She worried about what would become of Ryan if something serious happened to her again. For that reason, she says, she placed Ryan in a private group home when a spot became available in June of 2006.
She expected to feel guilty but quickly realized what a godsend the decision was for her, Ryan and for the rest of her family. Ryan, she says, adjusted immediately to his new home. He's happy and well-taken care of there, she says, and gets round-the-clock attention.
He has his own bedroom, which is decorated with wallpaper and furnishings from his favorite show, Sesame Street. He goes on outings weekly, something Drake says she and her husband were starting to have difficulty doing with him because they were getting older and less physically capable of carrying Ryan and his wheelchair.
Each week Drake, her husband and daughter visit Ryan. They watch TV with him, rub his feet and play games with him.
"He's so happy there," she says. "It's been like a miracle for him and us. I used to worry so much about what was going to happen to Ryan when I couldn't take care of him anymore."
When Ryan first went into the home, Drake says, it was the first time in decades that she had any free time. It was such a novel experience, she says, she and her husband didn't know at first what to do with themselves.
"We went out all the time because we thought we were supposed to," she says. "I'm having a social life again. I can plan a vacation now and not have to worry about what will happen with Ryan. I just don't worry so much anymore."
More recently, Drake started taking courses at a local community college where she plans to get an associate's degree in general studies. She serves as an awareness coordinator for the CdLS Foundation and is mulling a career in communications.
A deeply religious woman whose faith, she says, has helped sustain her and Ryan, she admits her son has astonished her and others by living as long, and as well, as he has.
"He has a will to live and I just think he hasn't accomplished yet whatever he was put here to do," she says. "I always believed Ryan was put on this earth for a reason. He's made me a better person and I just look at every day with him as being a gift from God."