Ride For Life: Tapestry of love

It's Thursday night in the Gaetjin household and 10-year-old Gabe is finishing his math homework at the kitchen table. Beside him, his 7-year-old sister, Gracie, draws poodles in her notebook.

Parents Dana and J.R. have just returned from running the kids to piano lessons and are cleaning up from a quick dinner.

Another son, 10-year-old Andrew, rounds the corner and starts arguing with Gracie and Gabe about whether the baby girl Dana is expecting will prefer playing sports or dolls.

On the surface, it seems like a typical weeknight in a typical American home with parents juggling schedules and running kids in different directions.

But the Gaetjins’ lives weren’t always so typical. The West Manchester Township couple have survived separate, painful pasts and are working to build a happy life together.

Two years ago, an incurable, debilitating disease left both Dana, 40, and J.R., 41, widowed within weeks of each other.

Life, as they knew it, was turned upside down.

Amyotrophic lateral sclerosis robbed Dana of her husband of nearly 10 years and stole away the woman J.R. fell in love with. Gabe and Gracie lost their daddy and playmate, and Andrew was left without the mother who adored him. Dana and J.R. found themselves alone, single parents mourning their losses and those of their children.

Now, each member of this newly formed family struggles to hold onto the past while forging a future together.

Cindy’s startling discovery

J.R. and Cindy Gaetjin wanted a baby so badly that in 1994, after eight years of a childless marriage, they adopted an 18-month-old boy and named him Andrew.

In early 1998, they brought another little boy into their Dover Township home, only to lose him after two months when his young mother changed her mind about the adoption. They were devastated.

That summer, Cindy, 41, and Andrew attended a family reunion and came back with a disturbing discovery. Relatives who hadn’t seen Cindy for a while had noticed that her speech was slurred.

After Cindy told J.R., he began to notice it as well. They attributed it to stress from the failed adoption, but still, they went from one doctor to the next in hopes of finding something to explain the change. Finally, they visited a neurologist who called her condition motor neuron degeneration and suggested that Cindy go to Johns Hopkins Medical Center in Baltimore for a second opinion.

The day they saw the neurologist, J.R. stayed up all night, researching the diagnosis on the Internet, hoping to make sense of it all.

“I got 3,000 hits, and they all pretty much pointed to Lou Gehrig’s disease,” he says.

But it wasn’t until they went to Johns Hopkins in March 1999 that the enormity of the disease struck Cindy. She realized she wasn’t going to get better.

J.R. remembers Cindy bursting into tears the moment they walked through the door of the medical center and saw other patients waiting for treatment for different conditions.

“It was pretty much nonstop crying from then on,” he says.

On the drive home, worn out from an exhausting day of tests and tears and meetings, Cindy started asking questions about what everything meant.

J.R. had just one question for her: “How much do you want to know?”

A biathlete’s search for answers

Later that month, 37-year-old Gene Gladfelter was cast as Jesus in the Easter passion play at Shiloh United Church of Christ. He had trouble projecting his voice, but neither allergy medicine nor steroids helped. One day, he noticed the muscle between his thumb and forefinger was gone, with only a flabby pouch of skin left in its place.

He thought he had been using his computer mouse too much. His wife, Dana, thought he should see a doctor.

That summer, Gene — an avid biathlete — ran, biked and went through a series of nerve conduction and neurological tests. He took part in his first triathlon at Gifford Pinchot State Park and started lifting weights to recoup lost strength in his arms. He gulped Gatorade before and after training to prevent the dehydration he thought was causing his muscle problems.

The neurologist told him it looked like a progressive neurological disorder. Gene didn’t know exactly what that meant. The doctor told Dana it was probably ALS but that such news was best broken to a patient in stages.

“That was the hardest part for me,” she says. “Because we never kept things from each other.”

As the end of summer approached, Dana couldn’t take it any longer. She wanted Gene to know what he was up against so he could do the things he wanted in the time he had left.

She figured their family doctor was the best person to tell him, so she arranged to meet Gene there for an appointment after work the Friday before Labor Day weekend. She remembers being worried about driving there separately because she didn’t know if Gene could handle driving home after hearing the doctor’s heartbreaking news.

After the doctor told him, Gene wanted to know how it happened — how he got the disease with the big, long, scary name. The doctor explained it like a bolt of lightning — you don’t know who it’s going to strike or when or why.

Gene declined Dana’s offer to drive him home and took a roundabout way back to the house. That weekend, they shared the news with Gene’s mother and sister.

Dana doesn’t remember Gene crying over the diagnosis, but she can’t recall exactly how either of them reacted. “It’s all kind of a blur,” she says. “It was more of kind of a numb feeling — that you just can’t believe it.”

A new house for Cindy

J.R. and Cindy had decided if they were going to deal with a debilitating physical illness, they needed to move to another house — one with a single-floor plan that would allow Cindy to be a full participant in all aspects of family life.

But they didn’t know where the money for a new house would come from. Estimates of how much Cindy’s care might cost made the financial picture fuzzy. “There’s so many questions about what you need to survive this illness,” J.R. says.

One morning, over breakfast with some friends from church, J.R. voiced his financial worries and his desire to find a house for Cindy. The other guys said the solution was simple: They’d build one.

For months, volunteers from Grace Fellowship Church in New Salem volunteered their time to build a house for the Gaetjins. Others snagged donated materials here and there, snatching up discounts and wholesale prices wherever they could.

Members of the congregation prayed for physical healing and Cindy, shy and quiet though she was, decided to address them all one Sunday in late summer. She thanked them for their prayers and told them that healing of a different sort had already taken place.

“It was an internal healing and peace,” J.R. says. “She knew she would have an impact on others’ lives because they would see the strength she had and why she had it.”

By the time they moved into their new house that fall, Cindy was using a walker to get around and speaking was becoming more difficult each day.

The couples meet

In November 1999, Dana convinced Gene to quit his job as an engineering liaison for Automated Production Systems in York. “I told him I wanted him to enjoy his life,” she says. Not long after, they saw a newspaper article about J.R. and Cindy and the house their church built for them.

At Gene’s next appointment with his neurologist, Dana mentioned the article and asked the doctor if he knew the Gaetjins. It turned out that Cindy was his patient, too, and the doctor agreed to give her the Gladfelters’ phone number.

“The dynamics were the same. We both had young children,” says Dana, adding most people with ALS are older. “We hoped to get the boys together to help support one another.”

After the holidays, the two couples met for dinner and kept in touch over the phone.

“Cindy was about six months ahead with her diagnosis, so when I had questions, I called J.R.,” Dana says.

She asked him how he liked the care Cindy got at Hershey Medical Center. J.R. warned Dana that if she wanted a power wheelchair, she had better place the order well in advance.

They swapped strategies for dealing with day-to-day caregiving responsibilities and vented their frustrations.

Who else but Dana would want to hear what J.R. went through each night to get Cindy ready for bed — swabbing her mouth to clean what a toothbrush couldn’t, smearing Vaseline on her dry lips and remembering to recharge the wheelchair?

Who else would understand why it took 45 minutes to straighten sheets so the wrinkles wouldn’t keep Cindy up all night?

And who else but Dana would know the frustration of trying to interpret the needs and wants of a loved one who communicated less and less each day?

For J.R., it was a relief to have someone who knew exactly what he was going through.

“We could yell and scream and nobody would think we were bad,” he says. “With people who aren’t in it, it’s hard to really open up.”

Fighting the battles

The Gaetjins and the Gladfelters fought their individual battles through 2000.

J.R., Cindy and Andrew traveled to Disney World for the first time thanks to another generous gift from members of their church.

The Gladfelters’ church took up collections and people in Gene’s childhood community of Stewartstown gathered donations to help pay for an addition that would give Gene a first-floor bedroom and handicapped-accessible bathroom.

They sponsored basket bingos, coordinated sock hops and dress-down days. Altogether, they raised $20,000.

In September, Dana and Gene took a trip to Ireland with money raised from a pig roast that friends of the family held that summer. The organizers had instructed Dana to use the funds for something fun rather than medical expenses.

The couple visited James Joyce’s stomping grounds in Dublin and toured the Guinness brewery.

“Gene loved all things Irish and he always wanted to go,” Dana says.

Both couples struggled to explain the disease and its inevitable consequences to their children. Right after his diagnosis, Gene told Gabe, then 5 years old, that daddy had an illness that would eventually kill him. Then he worried he shouldn’t have been so forthcoming.

But both families decided it was best to be open and honest from the start so the kids would be prepared.

Gene drove Gabe to school and had “dates” with Gracie at Rutter’s each morning before dropping her off at preschool. “He would get a cappuccino and she’d get a slushie,” Dana recalls. She says her husband used a cane when he went out because he feared people would think he was drunk because of his slurred speech.

Dana says Gracie became very tuned in to anyone who was ill after watching her father fall in the bathtub one evening while she and Gabe were brushing their teeth. And it took some explaining on Dana’s part before Gracie could understand it wasn’t her fault when she jumped from her favorite tree in the front yard into her daddy’s arms and knocked him over.

Dana, a Creative Memories scrapbook consultant, dealt with her husband’s eroding health by channeling her energies into making memory books for each of her children.

“That’s how I got through some of that stuff,” she says. “I wanted them to have tangible things so they could remember.”

Letting go

By Thanksgiving, both Cindy and Gene were in wheelchairs.

J.R. spent more of his time caring for Cindy and had to rely on friends and members of his church to help him take care of Andrew and routine chores.

Accepting the help was a hard step to take, but he knew he had to rely on the support of others if he was going to make it through it all.

“You give up the autonomy of ‘I can do it all,’ and you have to learn how to be flexible,” he says. “Fixing things is what a guy does, but with this, you can’t fix it.”

A lady from their church cut Cindy’s tops and dresses down the back, attaching strips of Velcro to make it easier for her to dress. A mother-daughter duo came to the house to bake Christmas cookies with Andrew so Cindy wouldn’t miss out on the experience. Others stopped in on a regular basis to shape and paint Cindy’s fingernails so she would feel pretty.

“Cindy’s nails were always a big deal to her,” J.R. remembers.

He watched his wife deal with excruciating pain as her muscles stopped doing the things she willed them to. Each night, it got more difficult to make Cindy comfortable in bed.

“It always reminded me of ‘The Princess and the Pea,’” J.R. says. “No matter what I did, I couldn’t get her comfortable.”

He and Andrew had some heart-to-heart talks. Andrew’s biggest worry was what would happen if his dad died, too. He began to detach from his mom as she slipped deeper into the grip of the disease.

Eventually, the pain got so bad that Cindy had to decide if she wanted to risk losing her alertness and take medicine to help her cope. Narcotics, feeding tubes and breathing apparatus became part of her daily routine.

J.R. says he and Cindy decided to say their goodbyes before she lost her lucidness “because we both knew what was going to happen.” From there, it was a slow downhill slide into a coma.

Lord calls Cindy home

As the trees began to bud and the flowers blossomed, a group of men from Shiloh United Church of Christ started making plans for the first Shiloh One Miler race to benefit the ALS Clinic at Hershey Medical Center. Then, about a week before the June 2001 event, Cindy stopped breathing.

J.R. was in the living room, watching the NBA playoffs. When he went to check on his wife, he found her cold. He made some phone calls and woke Andrew to tell him that his mother had gone home to God. He had explained to Andrew before that when Cindy died, she would go to heaven where she would get a new body and feel no pain.

The two spent some quiet time with Cindy until funeral directors came.

Cindy’s Australian shepherd, Tucker, wouldn’t leave her side or let funeral directors in her room. The dog became so depressed during the next couple of months that J.R. thought he would die as well.

Andrew handled things better. J.R. remembers him being very inquisitive about the cremation process and funeral arrangements. J.R. took off work the week after Cindy’s death so he and Andrew could establish their own routine.

Before the start of the Shiloh One Miler, Gene Gladfelter held a moment of silence for his deceased friend, then completed the race in his wheelchair.

Gene’s final race

On July 16, Gene stepped up to the starting line of his final race.

His arms had weakened to the point where he could no longer feed himself. So he decided it was time to stop eating.

It was a decision he and Dana had talked about many times and discussed with Hospice counselors. Gene, always fiercely independent, didn’t want to be a burden to his family and couldn’t bear the thought of his children seeing him hooked up to a ventilator and feeding tube.

“That was his way of taking control of something he had no control over,” Dana says. “He called it his last race.”

Gene did raise his wheelchair up to snatch an ice-cream sandwich from the freezer once, but the same resolve and discipline that helped him train for biathlons kicked in to take him through the rest of the race.

Dana respected and understood her husband’s wishes, but that didn’t always make things easier.

When Gene begged for Sierra Mist to moisten his dry mouth, Dana resisted the urge to bring him a glass, reminding her husband, “If I give you this, you won’t cross the finish line.”

“It was one of the hardest things I had to do,” she says. “I had to just keep thinking ‘this is his wish.’”

When a volunteer caregiver gave Gene soda the second or third day after he had stopped eating, Dana got upset.

“When your body goes through that, you naturally ask for those things, but once you get dehydrated, to get rehydrated can be very painful,” she explains. “I knew it was not what he wanted, just what his body was telling him to ask for.”

And Gene, proud as he was, didn’t want anyone but Dana to care for him. “That’s understandable,” Dana says. “But I would get frustrated because it really did wear on me after a while.”

Toward the end, Gene let a couple of his college buddies come to help out when lifting and rolling his body was more than Dana could handle.

Dana helped Gene stay strong and steadfast in his resolve by asking him if he could see the finish line.

“I just kept saying to him, ‘You’re soon going to be riding your bike on streets of gold.’”

Their pastor told Dana that the decision was a testament to Gene’s faith — that he was at peace with his God. She drew strength from the pastor’s words.

“I think it was one of the most selfless things anyone could have done,” Dana says. “Love is a funny thing. It would have been for selfish reasons that I wanted him to stay.”

On Tuesday, July 31, 15 days before his 40th birthday, Gene crossed the finish line.

Dealing with loss

Gene had already picked out pictures and music for his memorial service, so that weekend, the Gladfelters gathered with family and friends to celebrate his life. Dana told Gracie it was a party for her dad, so she showed up in her sparkly red party dress.

Once Gene was gone, Dana was ready for the quiet that came after the storm of volunteers and family members and funeral personnel.

“I was ready to be by myself and get back to whatever normal life was,” she recalls.

After Cindy’s death, J.R. and Andrew took a trip to the Presidential Mountains in New Hampshire just to get away for a bit and spend some time together. When they visited Mount Jefferson, J.R. pulled out some of Cindy’s ashes and the two scattered them there.

“I just thought that would be something special for Andrew and I to do together,” J.R. says.

Dana, who had quit her job as a cardiac registrar at York Hospital just before Gene stopped eating, focused on getting Gracie off to kindergarten that fall and helping Gabe adjust to second grade.

Sometimes, when her son’s anger would get out of control, Dana would remind him of words his father had written, advising Gabe not to blame the world for his loss and to get rid of his anger through physical activity rather than taking it out on his mother and sister.

From time to time, Gracie would ask questions and Dana would answer them as well as she could. She did her best to keep her promise to Gene that his children would never forget him.

Before his death, the two of them had gone through his race T-shirts and sent some off to be made into quilts for Gracie and Gabe. After Gene’s cremation, Dana bought necklaces for each of their children that held some of his ashes “so they can have their dad with them if they want to.”

J.R. was more worried about Andrew than he was about himself. He kept so busy he didn’t have much time to dwell on his loss and loneliness.

“You do wonder if you’re going to live by yourself forever,” he says. “But I was so focused on Andrew that the only time I would really reflect on those things was after he went to bed.”

Neither Dana nor J.R. wanted to spend the rest of their lives alone and felt that their deceased spouses would want them to remarry so their children would grow up with both a mother and father.

But neither suspected they would end up together.

A romance blossoms

J.R. and Dana kept in touch and hung out at each other’s homes, eating dinners and watching television together. Gabe and Andrew challenged each other to video games and chess and started to fight like brothers. The two families went to the movies, raced go-carts and played together in the snow.

None of the children wanted to let their parents out of sight for long. But that was OK because neither J.R. nor Dana felt much like dating.

“You just feel so different from the rest of the world,” Dana says. “J.R. was the only person I wanted to spend any time with; he was the person I felt closest to.”

The two had seen each other through everything. They had seen each other at their best and at their worst.

“We had pretty much been through it all already,” J.R. says.

Dana doesn’t really consider the time she and J.R. spent together as dates; she just missed the daily companionship and conversation that her marriage to Gene had provided.

“(J.R. and I) were such good friends and it seemed so natural,” she says. “There’s no one else on earth who knows more what I went through.”

Gene’s biggest fear was that he wouldn’t be around to parent his children. Cindy had explained to Andrew that his dad would meet someone someday and that was OK. Eventually, the kids started asking what things would be like if Dana and J.R. got married. Where would they live? Whose church would they go to?

Dana and J.R. were reluctant to tell friends and family about their blossoming romance for fear of what people would think.

“They don’t realize we’ve been alone for so long,” Dana says. “It’s not like we left our spouses. . . . I felt like I was a single parent for a long time.”

Their fears proved unfounded. Most people they told weren’t surprised by the news and seemed understanding of the situation.

A little more than a year after Gene and Cindy’s deaths, J.R. and Dana got engaged at the York Fair.

Combining families

That fall, the two families visited each other’s churches, then decided to look for a new place for their combined family to worship together — a place where all of them would feel comfortable.

“We decided that because we both had been so involved in each of our churches prior, that we needed to find something that was ours as a family,” Dana says. “But it was very difficult to venture out and do that because we were both very connected to our faith communities.”

On Feb. 1, they married in a ceremony at Friendship Community Church in Dover Township.

Dana didn’t walk down the aisle and no one gave her away. Instead, she entered from one side of the church with Gabe and Gracie, while J.R. and Andrew came in from the opposite end.

The two families came together at the front and addressed the gathering themselves before exchanging vows. Five small flames joined to light the large unity candle and Gracie ducked down to hide beneath the altar when J.R. kissed the bride.

“I guess she was embarrassed that we were kissing,” Dana says with a smile.

She and J.R. had purchased special rings for their children — gold bands with three circles intertwined in the center, symbolizing their two families becoming one. After exchanging their own rings, Dana slipped one on Andrew’s finger, while J.R. gave Gabe and Gracie theirs.

“People probably think we rushed into getting married, but I think one of the reasons we did was for the kids,” Dana says. “They needed stability.”

But things weren’t ready to calm down for the newly formed family just yet.

They bought a new house so everyone could have their own space. Andrew left the Christian School of York to attend West York’s Norman A. Trimmer Elementary.

And then, Dana discovered she was pregnant.

She and J.R. had talked about whether they would try to have a child of their own. But they decided against it.

“We decided three would probably be plenty to keep us busy,” J.R. says. “But God had other ideas.”

At first, they were shocked. It had happened so soon and despite their plans to the contrary. But then the joy took over.

At Easter, Dana and J.R. set out a fourth Easter basket and got the children guessing. All three were excited and curious to watch her pregnancy progress.

Holding on to the past

Cindy’s dog rests on the carpet of the Gaetjins’ living room and a framed stitching of the 23rd Psalm she made hangs over the couch where J.R. sits to watch Gracie practice piano. Andrew doesn’t talk much about his mom, but Gracie is eager to show off the Daddy box in her room.

It holds the shirt Gene was wearing the day Gracie was born, a poem he had published in a magazine and some of the cross necklaces he wore around his neck. Gracie pulls out her dad’s eyeglasses and tries them on for fit, but they make her parents’ engagement photo look fuzzy, so she takes them off.

Andrew doesn’t have a Mommy box, but he has photos of his mother and some items she kept safe for him, including an afghan she crocheted and a baby blanket she made to hold his first-born child.

“That’s one of the things she sort of wanted to do as a legacy,” J.R. says.

If Gabe doesn’t want to eat his vegetables at dinner, Dana reminds him that was one of his father’s favorite foods. “I’ll tell him ‘your daddy would eat anything, so you should try it.’”

In the fall, Dana gave in to Gabe’s pleas to play football. She and Gene had steered him to other sports because they didn’t want him to get banged up by the physical contact. But Dana decided Gabe needed an outlet for his energy.

At the first practice, Dana watched Gabe suffer inside the sweltering uniform and helmet as he went through strenuous physical drills. She wondered if she had made the right decision. On the way home, Gabe said he loved it and told Dana, “You know, it’s in my blood, mom.”

Dana and J.R. don’t worry whether their house is in perfect condition or obsess over whether they can get hair appointments in time for the holidays. J.R. says such matters seem insignificant “when you’re worried about life and death issues and whether your kids are going to be traumatized.”

Dana adds, “Gene and Cindy taught us there are much more important things than the trivial things people worry about.”

Making a future

J.R. won’t ever be able to forget the girl he fell in love with so long ago.

As he sits on the sidelines, watching Andrew’s in-line hockey practice at The Blast in Emigsville, the theme song from the movie “Titanic” comes over the loudspeaker and his thoughts turn to Cindy.

“Titanic” was his first wife’s favorite movie and their trip to see it in the theater was one of the last times Cindy left the house. “She was always mesmerized by that whole story,” J.R. recalls.

He remembers, but he doesn’t obsess. He has a new family now that he loves very much.

Dana always thought that having children was something she would only share with Gene.

But she has seen how God can teach her to love someone else. “It’s never in a disrespectful way to (Gene),” she says. “I see it more as respecting him because we had a good thing and when you have that, you want it again.”

The first time Gracie called J.R. “Dad,” Dana didn’t know how to feel. “In some ways, it broke my heart because I don’t ever want her to forget her Daddy,” she says. “But it also made me happy because I knew she felt that attachment.”

Gabe isn’t that comfortable yet, but no one is pushing him to forget the past. “I sort of understand it,” J.R. says. “I’m not here to replace their dad.”

And Dana won’t replace Andrew’s mom.

Sometimes, when Gabe acts with disrespect, Dana just ignores it. “You pick your battles as a parent,” she says. She knows everything her son has been through and understands his pain.

But J.R. says that’s no excuse. “To me, that’s a cop-out,” he says. “It doesn’t matter where it’s coming from because you still don’t do that.”

Both Dana and J.R. know their parenting styles may differ at times and that they’ve asked their children to make many adjustments. They agree the good has outweighed the bad in their choice to combine families.

As they sit around the kitchen table after a night of piano lessons and homework, they’re thinking of the future. The baby in Dana’s belly is hiccuping and the boys are discussing what their new sister will be like.

Any day now, she’ll arrive. Dana says they’ll call her Emma because the name means whole or complete.

“She completes our family.”

Reach Jennifer Vogelsong at 771-2034 orjvogelsong@ydr.com.

A MOTHER’S WORDS OF COMFORT

Dana Gladfelter helped Cindy Gaetjin assemble a memory book for her son, Andrew, so he could remember and feel close to Cindy after her death.

The two women included tidbits any child might want to know about his or her parents — that Cindy’s favorite color was blue and that she liked brownies, fudge, Rice Krispie treats and sand tart cookies for dessert.

The book also includes information about Cindy’s most mischievous childhood experience, her first job, and her first date. It opens with this letter from Cindy to Andrew:

“These are answers to questions that you weren’t old enough or didn’t have enough time to ask before I went home to our Lord. I pray you will find comfort in reading this, especially when you start to miss me.

I hope that your Dad will marry again so that you can have another Mom to love and who will love you as much as I did. I desire for you to have fond memories of me and of us, as I will have as I watch you and Dad from heaven. I was blessed to have you for my son even though our time together was cut short.

I was always proud of you. You meant the world to me. Please don’t be sad or angry that I am no longer with you. I will be waiting with open arms for you and Dad when God decides it is time for us to be reunited. But until that time, take good care of yourself, love and serve God, be strong in your faith and steadfast in the morals that are instilled in you. I love you Andrew . . . always and forever . . . remember that and you will be just fine.”

top

NOTES FROM DADDY

Dana and Gene Gladfelter put together memory books for both Gabe and Gracie to help them remember their father after he was gone. The albums, filled with photographs of special father-son and father-daughter moments, include Gene’s observations and his notes to each child. Here is a sampling of what he wrote:

In Gabe’s book:

“Most of the time when I was holding you, it was to hold on. You never kept still. . . . There was always something to go after or somewhere to explore.”

“Becoming a father made me feel a nobler calling in life.”

In Gracie’s book:

“Dear Grace, I hope one day this book shows you how much I’ve loved you. I’ll always love you. Your Daddy.”

“It was always a special time when you