Growing up in Niagara Falls, Jan Fitzgerald never saw mountains. She fished with her father in the Niagara River, worked in a souvenir store at Niagara Falls and certainly knew about grand forces of nature. It was not until 1973 when she and future husband, Doug, drove to Paul Smith's College that she saw the Adirondacks and fell in love with mountains.
She graduated from SUC Buffalo with a degree in business and consumer studies. Doug, recently discharged from the Army, found that PSC offered him access to his lifelong dream of studying forestry and forest recreation. The couple moved up from Niagara Falls, beginning a journey neither of them could have predicted.
"When I first met Doug, I had never been camping. I had never been in a canoe. Doug had never been downhill skiing. We were married during homesick weekend from Paul Smith's in 1974. We bought camping equipment and a canoe with some of the money received as wedding gifts, Jan said.
(Photo — Randy Lewis)
They intended to become true Adirondackers.
Living in various cabins in the Paul Smiths area as young couples often do, they held a variety of jobs. Jan worked as a bookkeeper, as a registrar's assistant at PSC, and at the hospital. After Doug graduated, they both worked at the KOA campground in Wilmington. From not having ever seen mountains to commuting on the back road over Whiteface Mountain every day from Paul Smiths, Jan's life had changed completely.
Children make a family
Their first child, Jesse, was born in 1979. Doug taught for several years at PSC, and Jan worked at American Management Association, learning that she really liked accounting.
"At that time I thought I could work full time and be a mom to an infant. That lasted all of three months. I was missing too much with Jesse. I quit AMA and found part- time work. The following year I started working part-time for Bill Sweeney, CPA, during tax season, and continued working there after tax season ended. I learned a lot about tax law."
Doug and Jan began to build their log home in 1980. They chose property in the Saranac Inn area because it provided them with access to water, woods and nature's beauty. The summer that Jesse was two years old, they camped in a camper on their property and worked on building their house. They continued their outdoor adventures, often taking Jesse in their canoe with a baby life jacket on.
Jan laid most of the block for the foundation of their house.
"The other thing I built was an outhouse. I had taken a BOCES building trades night course; I wanted to overcome my fear of using power tools. My father had enjoyed buying old houses and fixing them up, so I grew up with that, and gravitated toward helping him with that kind of work, the fixing stuff, the building stuff."
Their second son, Brian, was born in 1982. During these years Jan and her family enjoyed skiing and snowshoeing in the winter, and in summer, canoeing and hiking trails like the Blue Dot Trail. They were busy Adirondackers, building both a home and their own life in the woods. Their third son, John, was born in 1985. Their house slowly rose up, closed in, and was finally lived in during the summer of 1985. "And that was the summer that John got sick," Jan said.
When John was six months old, he became very ill.
"It started at the end of summer. He had a seizure, or what I thought was a seizure," Jan said. "I had never seen a seizure before. I was giving him a bathand he made these strange movements over and over again. I knew something was wrong."
He was diagnosed with infantile spasms, a rare seizure disorder.
"He had been starting to sit up and crawl before this happened," Jan said. "Then came the seizures, and all development stopped."
Being in Burlington at the medical center that December was difficult for Jan's family. Jesse was in first grade, Brian was at daycare, and Doug was working for New York state. Their house was still barely a shell. Their experience created intense emotions for everyone. Doug stayed home with Jesse and Brian while Jan stayed in Vermont with John. Mother and baby boy left Burlington on Christmas Eve in 1985 not knowing if he would survive. If he did live through this period, doctors said there was no way of knowing what his future would hold.
"Also, I had no support system in Vermont," Jan said. "That still happens to moms and dads when facing medical challenges today, feeling so alone."
Their baby did survive; the seizures did stop, but John's mental development was delayed. This sudden change in her life left Jan reeling. She said, "Whenever someone gets this kind of diagnosis, it's natural to be looking for a cause and looking for a cure. Now I realize there is a reality that sometimes neither a cause nor cure can ever be found."
Another reality was that her life would never be the same. Her son's disability was challenging, day after day, hour after hour. "John had difficulty sleeping. When he didn't sleep, either Doug or I did not sleep." Jesse and Brian felt the amount of energy their younger brother was needing from her and Doug. They were little boys, and they were impacted, too.
Families are tested in unimaginable ways when adjusting to living with a child with disabilities.
"There was a lot of stress, loss of wages . and the disability on top of it. There was resentment and fear and the helplessness. When it's your child suffering, it hits you in your gut, and you have to reconcile yourself to your life and your child's life."
Babysitters were tough to find. "There were a few and we cherished them." Jan's life and the life of her son were totally intertwined.
John grew, and so did his skills. There were things he wanted to do to be like his brothers, especially skiing. He learned to ride a bike and go downhill skiing at Mt. Pisgah when he was eight years old. Downhill skiing became Jan's whole family's winter activity.
With maturity, John became more involved in activities and school. These steps were in no small part due to Jan's focused energies. "School is a challenge for kids with special needs," Jan said. "We decided what was important and focused on that."
Reading, arithmetic and sensory integration, which is occupational therapy, were priorities. Of them all, reading was most important to Jan.
"I knew that if you can read, you can survive in life," she said.
She had meetings with doctors, teachers, counselors and aides. She advocated for his right to participate in school like other kids. She wanted him to have as many opportunities in life as possible. She and Doug learned that you had to ask the question: How do you know what someone can do until they try? They encouraged John try a lot of things, and at 18, he became an Eagle Scout. He now drives a car, has a job, and uses a computer. He gives back to his community.
When John was 14, Jan decided she wanted to do something different with her life, something less financially driven, and more purpose driven. She helped initiate the northern sector of nonprofit Parent to Parent of New York state.
Experiences create change
Parent to Parent is a place parents of children with disabilities can call when they have questions. The families involved offer to help other families who are facing some of the challenges they have already encountered and learned from. They help address the familiar problem of feeling alone and overwhelmed. Parent to Parent provides information, contacts and support for those still 'shell-shocked' by their change in life circumstances. With her own experiences, Jan has wisdom to share. She says, "I do what I do to reassure people they are not alone. I have learned I can help create change. I want to inspire others and share the lessons I've learned."
In 1999, Jan got the northern New York office up and running as regional coordinator, moving into the role of fiscal manager for the statewide nonprofit organization. She eventually rose to executive director, a position she still holds.
When asked what gifts have come to her because of all this life learning, she says, "I like problem solving, taking a puzzle and putting it together. I've learned that facing fears helps a person let go of the need to control everything. I've recognized that everyone has challenges in their life, and how we use those challenges reflects our character."
A true Adirondack woman, driving the same winding roads we drive year after year, she has succeeded beyond her wildest dreams. She has raised three sons to be fine, caring young men. Using skills she gained from college, work and the realities of life itself, she runs a statewide organization that helps others learn to navigate life's highly charged curveballs.
If you see her out on the river or lake, gliding by in her new canoe with a huge smile on her face, wave to her. You'll know she's happy to be out there in the sun.
For more information about Jan's organization, check out: www.parenttoparentnys.org.