is honored with a Brick from Greg Sullivan.
A Modern Day Pioneer Woman, A Pursuer of Adventure, A Reveler of Beauty, and A Survivor of Adversity.
To understand the resilience, the industriousness, the passions, the beauty of Janet Sullivan, it is helpful to envision a modern day embodiment of the pioneer woman. This is not a story about survival. This is a lesson in living.
It was just our first date, well that's not quite right because a date is more scheduled and planned. This was a rendezvous with life and destiny it just happened. A college football game, a dance, an embrace under the street light. That was September 25, 1976.
Life has a way of tempering hopes and dreams with a heavy dose of reality. Only a couple of months had passed since the "rendezvous" and we were headed to Roswell, NM for a college football bowl game. Just past 4 a.m. the car hit a guard rail and went airborne. It took a few months to recover from the injuries, but we emerged with an urgency not to postpone life. The following July, at ages 19 and 20, we were married.
Connie, Janet's niece, was our flower girl. Janet and Connie's mother were very close. We were living in Lawrence and had just enjoyed our first Christmas together in Coffeyville, Janet's hometown. It was a blessed time with her family but especially with Connie, because kids make Christmas. The holiday plan was for Deanna, with husband and daughter, to follow us back to Lawrence and see our new "home" (apartment). Connie would then stay and spend the Christmas break week with Aunt Janet and Uncle Greg. Life was good.
Only a few hours passed before the call. The Highway Patrol said they were sorry to inform that Deanna had died in a crash on the ice slick highway. They wanted to make sure that we had Connie that she was safe. It was an instant void for Janet. Losing her best friend, her closest confidant it was like her own soul had been separated from her body. Janet held Connie for dear life. She embraced life in the face of death.
It is God's gift of life. We waited four years to start our family. The birth of careers and a business had delayed the baby making despite strong maternal pulls. Janet was the perfect pregnant mom. She only ate healthy food, swore off not just alcohol but pop and tea as well. She was beautiful. The glow was real.
Whitney was born March 28, 1981. She was a beautiful and healthy baby. It was a time of reorganizing priorities and juggling demands for, besides a new baby, we had just purchased our first home. Despite the birth of new frenzied craziness, a baby has a way of placing life in order. There were lots of changes. We took lots of drives; lots of photos; lots of videos; lots of Kansas day trips; lots of middle of the night wake-ups; lots of baby at work; lots of work at home; lots of bouncing; lots of love.
Three years passed before we were ready to give Whitney a sibling. Grant was a much happier baby and taught us a lot about being better parents especially about schedules and demands on our time (bed time, eating time and quiet time).
We had the perfect home in North Riverside. We had purchased more than we could afford but converted the unfinished basement into an apartment where we lived and rented out the upstairs to make ends meet. With Grant's arrival we were able to move upstairs and then rent the basement. We had the perfect little family. And it was at this time that we became active in our neighborhood Methodist Church. All was right; well, sort of.
Janet thought three year old Whitney walked awkwardly so she took her to the pediatrician. He told us it was nothing. Whitney was just clumsy, she'll grow out of it. But when school age came she was still developmentally delayed, so we sent her to a special kindergarten class. The next year was met with good success in a regular kindergarten class at our neighborhood school.
But the journey had begun to find out why Whitney was different. Physical Therapist. Occupational Therapist. Speech Therapist. Neurologist. Optometrist. The therapists worked with her on her delays. The neurologist did an EEG to look at her brain waves. But it was the family eye doctor during a routine eye exam that came up with the first big piece of the puzzle. Whitney had an eye disease that was very rare for her age Retinitis Pigmentosa (R.P.). It is a degenerative eye disease manifested by limited peripheral vision and night blindness that progresses to total blindness.
It was a devastating revelation to us. But it did help explain why Whitney awkwardly bumped into things or stepped on her toys instead of walking around them. But we needed answers. What became clear was that Whitney had a unique package of problems; that the problems were of a genetic origin. Unfortunately for Whitney, the testing began: EEG (brain impulses), ERG (retinal impulse exam done in the hospital under anesthesia), EKG (heart exam), blood assays (lots of needle sticking), Nerve Conduction Study (sending electrical shocks throughout her body), muscle biopsy (tissue sample), MRI (pictures of the brain), lots of poking and prodding, lots of pain. One by one we eliminated any match to an existing syndrome. We were left with a rare retinal degeneration in combination with degeneration of the Cerebelum, the part of the brain that remembers how to do the repetitive muscular movements like eating, walking and writing. It was a difficult time, similar I imagine to that pioneer family crossing uncharted territory, not knowing what lies ahead, just dealing with the hardship of the day. Embracing life in the face of death.
To fully understand Janet's journey you also have to appreciate her work day. Besides the heavy responsibilities of motherhood and running a household, Janet has been living the all American "dream" of owning your own business. The "dream" scene usually conjures up visions of independence, control and financial rewards. In reality the responsibilities are overwhelming to your customers, to your creditors, to your employees. Couple those responsibilities with the marriage-survival-risk of working with your husband. It is a very trying experience. First trying to combine two people with different personalities and different workstyles. And secondly, trying to separate the workday partnership from the home-life partnership. But Janet successfully applies her gifted artistic talent with a strong accomplishment-oriented drive to "get the job done". It all adds up to a tremendous amount of stress. And stress takes its toll.
"I'm sure it's nothing," said the doctor. "You're just 33, so we'll just watch it." Maybe it was a woman's intuition. Maybe it was knowing life was not in order. After six months she told the doctor to get it out anyway. The draining process immediately led to surgery to remove the cancerous tumor. In the face of death, Janet gave life a great big hug. Janet explained chemotherapy as an attempt to kill the spreading disease by taking the body as close to death as possible. Need a lesson in living? Janet went through this period with zestful passion for life. She didn't miss a day of work. She didn't shy away in public. She emerged from chemo a stronger person. Her hair wasn't an inch long baby soft and baby fine when she burned her wigs. Her first purchase was a short, sexy mini-dress.
That period of personal, physical and mental trials though didn't distract Janet from her toughest job, being a special mom to special children. Whitney was at the end of first grade and the child study team held a staffing to talk about Whitney's physical challenges and needs. We were blind-sided by the school psychologist who had decided that Whitney didn't belong in a regular classroom because she was mentally retarded. Our kids and life in general had taught us that you have to pick and choose your battles. You just can't physically and mentally fight them all. But this was devastating, so we sent out the battle cry. Janet and I ended up in a downtown law office sitting across the big conference table from USD 259's Director of Special Education, Director of School Psychologists, and their legal representative. It was really intimidating. They agreed to have Whitney tested by a private psychologist. He found that a standard I.Q. test needed to be adapted because of her physical shortcomings. He determined that her mind was good; her body was just failing.
The next few years weren't easy for Whitney. But she loved school and worked hard. The gap between her and her peers kept growing. Janet worked hard at helping Whitney fit in with her classmates. She was a home room mother at school, a Brownie troop leader, a Sunday school teacher. But it hurt watching kids at recess change the "kootie" tag game into the "Whitney" game. It hurt when the music teacher intentionally left Whitney standing on the side of the stage alone while rest of her class did their performance. It hurt when the other kids in her Sunday school class mimicked her at church. But those hurts are part of being the mother of a "special child."
Over a two-year period, Whitney went from a talking, walking child to a 15 year-old in a wheel chair fed through a tube. This disease reduced her from a teenager with hopes and dreams to an invalid needing 24-hour care. These were difficult days watching this disease manifest itself. But we also blessed with many very caring and giving people. We learned that a lifetime is really just one day--this day. We've learned how to make the most of it.
During Whitney's journey we realized that Grant has the same disease. You would think it would get easier the second time. But it's actually a harder trip to make, knowing where the road leads. Grant is Janet's love child. She doesn't understand why God won't bargain with her, for she would gladly trade her health for the health of her children.
The pioneer woman of 200 years ago was characterized by hard work, determination, perseverance, and an incredible spirit of adventure. But she is not just defined by her hardships, but by her ability to find solace and serenity. Janet finds solitude through gardening the best medicine for mental health, she says, is crumbling dirt between your fingers. She is a voracious reader. She has a passion for planning trips. Janet loves to travel and making memorable trips for her special family. That means taking roads less traveled, the back roads and blue highways. Just ask her about the lobsters on Bailey Island, Maine; or the crawfish house somewhere in the bayou-boonies of Louisiana; or the hidden petroglyphs in Wyoming; or the majestic formations at Tent Rocks in remote New Mexico; or the clothing-optional hot springs tucked away in the forest-covered mountains near Jemez Springs, NM.
The pioneer woman can also be identified by her faith. A continual growth process, this faith journey alternates between "why me Lord" to "thank you God." I think that Janet's pioneer spirit is best summarized by her hand-written note hanging next to her computer at work:
"Cherish your yesterdays;
Dream your tomorrows;
But Live your today."
Submitted by Greg Sullivan, in love and admiration to his heroine
September 18, 1998.