He'll be there

Omaha dad Tim Cacioppo has ALS. Despite his diagnosis, he's doing everything he can to keep his family's life as normal as possible, while imparting life lessons now and preserving some moments for later.

By Michael O'Connor / World-Herald staff writer

Saturday, May 14, 2016

While coaching his son’s hockey team, Tim Cacioppo tried snapping on the chin strap of a player’s helmet, something he’d done hundreds of times before.
But Tim’s thumb buckled, like it was on a hinge. He couldn’t get it to work.
He told his wife, Natalie, and at first they weren’t worried. Maybe his thumb was just cold because of the chilly Omaha ice rink.
But then Tim recalled other changes. He was occasionally slurring his words. And sometimes his leg twitched.

From top to bottom: Tim Cacioppo with daughter Anna; sons Salvatore and Vincent; and son Sebastian.

Tim made an appointment with a physician, who referred him to specialists. In May 2013, a neurologist delivered the diagnosis: ALS, or Lou Gehrig’s disease, a progressive and fatal neurological condition.
Tim was only 43, a stay-at-home dad to four children under age 12.
Despite the crushing diagnosis, Tim promised himself not to put his family’s life — or his role as a dad — on hold, but to keep life as normal as possible. Leaning on his faith, Tim resolved he would share as much as he could with his children during his time left, whether it was how to drive or how to cook his favorite recipes. And knowing he would be gone for milestones like graduations and weddings, he was determined to somehow have a presence at those moments.
For years, Tim grocery shopped, cooked the family’s meals and made sure the kids finished their homework. He dropped them off at school and picked them up. He drove his kids and classmates on school field trips, led a Cub Scout pack and coached his children’s hockey and soccer teams.
In the summer, he led his kids on trips to the zoo, children’s museum and botanical garden. He set up a Slip ’N Slide in the backyard, organized whiffle ball games and broke out finger paints on rainy days.
He worked part time for a company that cares for plants at malls and offices, but mostly only on weekends and evenings, when Natalie was home from her computer job with an Omaha construction company.
ALS — amyotrophic lateral sclerosis — slowly robs muscle strength, shackles body movement and silences speech. Tasks we take for granted — holding a pan, swallowing food, chatting with your child — become difficult, then impossible.
Patients on average live two to five years after symptoms first develop, so Tim knew he didn’t have much time for what he considers his most important role in life — being a dad.

In May 2013, Tim Cacioppo, an Omaha father of four, was diagnosed with ALS, a fatal neurological disease. (Brendan Sullivan/The World-Herald)

Skating with Vincent

The kid who never stopped moving

Tim was a kid who never seemed to stop moving. At 5 months old he pulled himself out of his crib, and still escaped after his parents placed a net over the top to block his exit.
He grew up with two sisters in central Omaha’s Aksarben neighborhood, taking to sports in a hurry. Hockey. Baseball. Soccer. Wrestling. Football.
Tim didn’t mind getting banged up on the ice rink or ball diamond. His mom jokes he got stitches every two years whether he needed them or not.
He was an OK athlete and loved hockey best, but stopped playing at age 11 because late-night practices left him too sleepy to get up for classes at Holy Cross Catholic School.
Tim showed a rough-and-tumble side, but a nurturing one as well.
His parents, Patti and Richard Cacioppo, cared for foster children, mostly babies, and Tim helped. Even as a preschooler and then as a young boy, Tim sat on the couch, cradling babies, feeding them bottles. He made funny faces and silly noises, hoping for a smile.
He began baby-sitting outside the home when he was 11, taking jobs his older sister couldn’t because she was booked.
Tim learned cooking from his mother and his Italian grandmother, watching his nana make marinara sauce, mostaccioli and double-crust pizza. She didn’t work from written recipes, but talked as she cooked, explaining each step, each spice, tasting as she went.
Tim attended Gross High School and, after graduating in 1988, enrolled at the University of Nebraska at Omaha.
He worked part time to pay for college, and one job led to something much more important than tuition money.
Natalie thought Tim was handsome and funny when they met in 1993 while working at the Omaha Marriott.
As their relationship grew stronger, Tim and Natalie talked about someday starting a family. He told her he longed to become a dad and wanted lots of kids, even picking a number: eight.
And they discovered they shared a common goal. Neither wanted children in day care.
They married in 1999 and their first child, a boy they named Salvatore, was born May 29, 2001, their second wedding anniversary.
Tim became the parent who stayed home with their son because Natalie had a good job and he knew it would be a good fit for him.
Tim couldn’t wait to show off their new baby. When Salvatore was just 8 weeks old, Tim and Natalie packed their Honda Accord with diapers and onesies, setting out on a 1,200-mile round trip to visit relatives in Indiana and Kentucky.
When holding a newborn, some dads look like they don’t know which end is up. Not Tim.
All those years helping his parents with foster babies paid off. He knew how to cradle his baby’s tiny head, slip on jammies, bathe him and change a stinky diaper.
Natalie didn’t need to read a baby book. She learned by watching Tim.

Cooking with Salvatore, left, and Vincent

Dad is sick

In late spring 2013, a few days after his diagnosis, Tim and Natalie gathered their young children around the dining room table and told them the news: Dad is sick.
He will get weaker. His “muscles will go away,” they gently told their kids, and he will die.
Tim and Natalie didn’t say how much time he had left, not wanting to lay everything on them at once.
Over the next few days, questions bubbled up from Salvatore, Vincent, Sebastian and Anna — ages 11 to 5 at the time.
Anna, the youngest, asked if medicine would help dad get better. Tim and Natalie tried explaining. Medicine won’t help. Dad has something doctors can’t fix.
What’s the disease called? Vincent asked. It’s known as Lou Gehrig’s disease, his parents told him, after the baseball star who died from it in 1941.
Vincent’s face fell. The 10-year-old had watched a documentary at school about Gehrig that explained how long patients live.
“That means,” the boy said, “you’re going to die in five years.” He turned away, so upset he wouldn’t even talk to his parents.
Later that evening, Natalie sat in a bedroom alone with her son, her arm around the boy.
Vincent was scared. Dad was always there for the kids. Who would take care of them when he was gone, Vincent asked. Who would take them to school? Pick them up? Fix dinner? Who would watch them in the summer?
She tried reassuring her son. Don’t worry. You will be taken care of. We will find a way.
Natalie had looked for her own answers and had accepted that it was God’s will for Tim to face the disease, so others with hardships could learn from him.
By the time they told their children about the disease, Tim and Natalie had researched ALS and talked with his specialist, Dr. J. Americo Fernandes of the University of Nebraska Medical Center and Nebraska Medicine.
They knew there’s no cure and that it attacks nerve cells that control muscles.
The most common cause of death is respiratory failure. Patients simply cannot take a breath.
When Tim was diagnosed in 2013, the disease had already begun its march through nerve cells controlling every breath he took, every word he spoke, every step he took.

Sebastian plays with dog Bonnie as Tim uses his iPad. (Brendan Sullivan/The World-Herald)

Tim dances with Anna at a wedding reception in Indiana in 2014 — a dance captured on video for his daughter to look back on at her own wedding one day.

Dancing and driving

Anna wore a white-and-black dress with a shiny jeweled neckline when she stepped onto the dance floor with her dad.
Two summers ago, Tim, Natalie and their children traveled to Indiana for a cousin’s wedding, gathering with relatives afterward for the reception.
Of all the milestones, the thought of missing Anna’s wedding someday hurt Tim a lot. She is his only daughter, his youngest child, 7 at the time.
But they would get a chance for a father-daughter dance, one captured on video she will watch years from now, when she gets married.
Half way through the reception, as arranged by Tim’s mother and sisters, the DJ called Tim and Anna to the dance floor, and cued up the song “Butterfly Kisses,” about a father watching his little girl grow up and then seeing her get married.
Tim took Anna’s hand and led her to the dance floor, her curly blond hair pulled back with a bow as he wrapped his arm around her.
Father and daughter swayed to the music and then he twirled her once, twice, three times, as colored lights swirled around them.
Tim’s oldest child, Sal, dreamed of driving and learned by watching his dad take the kids to school and hockey practice.
Never follow the car in front too closely, Tim would tell his son. Always signal your turn. Don’t look at your cellphone.
On a balmy summer day last year, 14-year-old Sal, still too young for a learner’s permit, got his first behind-the-wheel lesson from dad.
Tim and his family had driven to a barbecue at a friend’s house in the country, and as the cookout was winding down, Sal and his dad stepped into the family’s white 2003 GMC Yukon.
Sal slid behind the wheel, turned right out of the driveway and cruised down a gravel road. Watch your speed, dad said.
He drove a half-mile, turned into another driveway, slowly backed out, then pointed the SUV toward the barbecue.
As the sun hung low in the sky, Sal pulled the Yukon into the driveway where they began, feeling safe with his father beside him.

Salvatore cooks burgers for the family. (Brendan Sullivan/The World-Herald)

Helping Salvatore with his tie

The videos

When your last name is Cacioppo, you better know how to make great spaghetti and meatballs. Tim always nailed it.
He wanted to pass along recipes to his kids and soon after his diagnosis began recording videos of him whipping up the family’s favorites. Using a video camera on a tripod, Tim filmed more than a dozen cooking videos: chicken dumpling soup, smoked chicken sandwiches, T-bone steak and made-from-scratch peanut butter brownies.
In one video, he stands in front of a metal mixing bowl loaded with ground beef for meatballs, a dish his kids love.
“Handful of Parmesan cheese,” he says, dropping it into the bowl.
“Handful of parsley — fresh out of our herb garden.”
“Basil — a half a handful.”
He’s wearing a black T-shirt, with “Peanuts” cartoon characters on the front, as rock music plays in the background.
Tim made other videos. In one set, he offers words of love, support and congratulations to his children on their high school graduations. In another video, one meant for his grandkids, he reads, “The Giving Tree,” his favorite children’s book.
Tim came up with all the ideas for the videos himself. He didn’t make a list, but knew what he wanted to cover.
Natalie liked his plan from the start because she knew the videos would help their children remember their father. She knew that for their youngest children especially, their memories of dad would become distant.
Natalie works in information technology so she knows all the tricks for protecting digital files. Tim’s are safe, each backed up twice, including on a hard drive at her parents’ house.
In another of his recipe videos, he plops tortillas onto an iron skillet for chicken quesadillas, offering tips for keeping the smoke alarm quiet: “In this house, make sure the vent is on; ceiling fan going; and you might want to crack the back window.”
A moment later he adjusts the camera so it shows him better, then waves, flashing a wide smile.

Tim greets Sebastian after his hockey game. (Kent Siever/The World-Herald)

Despite the crushing diagnosis, Tim promised himself not to put his family’s life — or his role as a dad — on hold, but to keep life as normal as possible. (Kent Siever/The World-Herald)

Hockey dad

Young hockey players whizzed across the rink at Omaha’s Tranquility Iceplex on an overcast morning this winter.
Tim sat on metal bleachers with Natalie as they watched son Sebastian take the ice for a game. Sebastian wore No. 1 on his red jersey as a winger for the Mavericks, a youth hockey team winding down its season.
Tim’s eyes widened as he turned his head side to side, watching his son skate.
“C’mon, boys,” Natalie shouted.
She knew her husband would not miss this game, just as he hadn’t missed the dozens of other hockey and soccer games, track meets, Girl Scout ceremonies and other events since his diagnosis 2½ years ago.
Natalie and Tim never really set out a plan for keeping life as normal as possible for their children. It was what Tim wanted and Natalie knew it was smart, even though as each month passed it became tougher for him as ALS slammed his body.
He carried 180 pounds on his broad-shouldered, 5-foot-7 frame before ALS, but had dropped to about 130, because he can’t take in the calories he used to. He once loved digging into a plate of lasagna or taking a juicy bite from a thick rib-eye.
Now muscles for chewing and swallowing are too weak for solid foods. Meals consist of a liquid formula flowing through a quarter-inch feeding tube inserted in his belly.
He can still drive and walk, but his legs are weak, his steps small. The dad who spent afternoons whacking a whiffle ball in the backyard with his kids now gets winded walking up the basement stairs.
Arms that once lifted kids out of car seats can’t carry a big bag of groceries. His fingers are so weak he can’t button a shirt, tie his shoes or close a Ziploc bag.
Before ALS, Tim spoke in a strong voice that carried — perfect for shouting instructions to players when coaching hockey or calling down the hallway for his kids to finish homework. His voice now sounded like a loud whisper, his words fuzzy and slurred.
As Tim watched his son skate, an electronic notepad with a keyboard rested on his lap. He got it last year when his voice began fading. His fingers still worked well enough to type phrases into the notepad, which converts them to spoken, electronic-sounding words played over speakers.
“Ref, you need glasses” and “Can we get a call?”
Tim smiled as he told a visitor how the notepad keeps him in the game, then turned his attention back to the ice.
The other team scored first, leading 1-0.
Minutes later, Sebastian’s team scored and Tim brought his hands together for two loud claps. Sebastian didn’t shoot the goal, but Tim locked eyes with his boy and pointed at him with approval.
In the third period, as Tim’s eyes traced his moves, Sebastian skated up the ice with the puck and slapped a shot at the goal from 15 feet away. The other team blocked it, controlling the puck for a moment, before Sebastian stole it back.
When the buzzer sounded, the game ended in a 1-1 tie.
Tim stepped carefully down the bleachers and smiled as he walked slowly to stand with other parents, waiting for his boy to step off the ice.

Tim picks up the kids at St. Thomas More School. Just getting in and out of the family’s SUV can drain his energy, but Tim says he’s always enjoyed bringing the kids home from school. (Brendan Sullivan/The World-Herald)

“You don’t want to leave this earth,’’ Tim (middle) said. “(But) heaven is a lot better.” (Brendan Sullivan/The World-Herald)

Soaking it all in

A school bell rang on a cool afternoon last month as Tim waited for his children at St. Thomas More Catholic elementary.
Students dashed out and soon his own four kids piled into the family SUV and Tim drove them to their tan ranch home on a hilltop near 46th and Center Streets.
Picking his kids up from school has always been one of his favorite parts of being a stay-at-home dad. He won’t give it up, even though just getting in and out of the SUV drains his energy.
At home Tim stretched out on a living room recliner, a position that makes breathing easier.
He and other ALS patients face a tough decision on a medical procedure that assists breathing and can extend their lives.
Doctors create an opening into the windpipe and insert tubing connected to a ventilator machine. The machine helps with breathing and when necessary can take it over completely, requiring a 24-hour attendant or family caregiver.
A ventilator can stretch a patient’s life by months to years, and just a small percentage choose it, largely because of the expense, diminished quality of life and burden on family.
Tim chose to forgo ventilation for all those reasons, knowing the decision ultimately was best for him and his family.
“You don’t want to leave this earth,’’ he said. “(But) heaven is a lot better.”
As he lay on the recliner, a medal of St. Benedict rested on his T-shirt, fastened by a small pin. The Italian saint was known for his holiness and wisdom, and Tim’s father gave him the medal for strength.
Tim prays every day that God will take care of his kids and that Natalie, his wife of nearly 17 years, will get along without him. Last summer they linked hands and renewed their marriage vows, with their four children standing beside them.
It was now nearly 5 p.m. and the family dog, Bonnie, barked as Natalie arrived home from work.
The two youngest, Anna and Sebastian, had soccer practice in an hour, so that meant a quick dinner. Natalie slid a frozen pepperoni pizza into the oven and fixed a salad.
Anna nibbled a crouton while Sebastian shot baskets in the backyard and Vincent grabbed a handful of nacho chips as he stepped into the kitchen with a book.
Tim pulled himself from the recliner, rinsed out his feeding tube at the kitchen sink, then took his seat at the head of the table.
As they ate, Natalie and the kids bantered, in that easy way families do.
Who had gym today, mom asked.
I did, Anna said. Whiffle ball.
What’s your favorite HGTV show?
“‘Property Brothers,’” someone piped up. Natalie and the kids riffed about possible spin-offs, like “Property Cousins” and “Property Nephews-in-Law.”
Tim watched and listened, quietly soaking it in.
Contact the writer: 402-444-1122, michael.oconnor@owh.com

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