COON RAPIDS, Minn. - A Minnesota family just returned from a “bucket list” road trip adventure to the Atlantic Ocean to bring joy to their 6-year-old son, who suffers from a rare seizure disorder.
Kari and Kirk Olavson planned the 2,800-mile, two-week journey after they recently found out their son Jacob’s health was in further decline.
Jacob Olavson, 6, starting having severe seizures just days after he was born. By six months old, his parents discovered the seizures had caused significant developmental delays.
Today, Jacob is in palliative care, spending most of his time in a hospital bed in his bedroom or in a wheelchair. He can’t speak or walk, struggles with his vision, and receives help breathing with a trach tube.
Only recently have geneticists come up with a diagnosis called early infantile epileptic encephalopathy-17, a seizure disorder affecting a handful of people in the world.
“It’s hard to see that because the prognosis isn’t great,” said Kari Olavson. “But living life is not sitting in his bed.”
Kari decided to act on the advice from another parent who'd taken a trip before losing her child.
“She said you will never regret going,” she recalled through tears. “And we told him he's going to see the ocean, which is like nothing he's ever seen before.”
It's how Jacob's Journey -- a cross-country adventure -- and a little boy's bucket list was born.
A bucket list trip would require a feat the family had never attempted before, taking a hospital room on the highway and turning their van into a traveling pediatric intensive care unit.
The Olavsons had to pack a ventilator, oxygen, suction machines, feeding tube gear, dozens of medications, and battery and power supply to keep his lifesaving machines running, all to bank on the therapeutic power of the open road.
With his little sister and uncle aboard too, the family took off for Chicago in the beginning of July. Jacob beamed from his backseat all the way to Pennsylvania, sailing ahead until a scare on a turnpike where they pulled over to fix an emergency with his trach.
“Jacob was blue, he went south pretty fast,” said the Olavsons. “But he recovered really quick.”
Jacob was alert at the hour the family reached one of their top destinations, the “Rocky” steps in Philadelphia, where the movie “Rocky” was filmed.
Kirk Olavson carried Jacob up a triumphant 72 steps, even hauling a backpack ventilator, cheering at the top.
In Sea Isle City, New Jersey, a few days later, they carried Jacob to the ocean for the first time, dipping his toes in the water, crossing off the tip top of his bucket list.
“He didn’t really like the cold water, but then we laid him back on the beach and he was so happy, under an umbrella. He was really relaxed too. I think the sound of the ocean, the waves coming in and out, you could tell he was very calm,” they said.
The Olavsons were amazed by the kindness of strangers along the way. A hotel maintenance worker in Pennsylvania offered to fix Jacob’s broken wheelchair. Their New Jersey hotel even gave Jacob a special beach wheelchair to get through the sand and shore.
“He changes everyone he meets,” said Kari Olavson. “You don’t have to talk to teach people lots of things.”
While Jacob’s life hasn’t always followed the scenic route, seeing his joy gave Kari and Kirk Olavson freedom in the uncertain road still ahead.
For this trip was never measured in miles, but moments.
“I feel really empowered,” said Kari Olavson. “I think that we put a lot of limits on ourselves, people in generally do that.”
“Maybe we were putting too many limits on ourselves before, keeping ourselves in a bubble. He taught me a lot, that he is a lot tougher than we think he is,” said Kirk Olavson.
You can follow Jacob’s Journey on his Facebook page or through #JacobsList.
Some of the bucket list goals the family wants to achieve include: go to a Minnesota Wild game, go sledding, fishing and camping, meet someone famous, go on a pontoon ride, go on a St. Croix River riverboat ride, see a concert, view a meteor shower, go on a Ferris wheel, ride a merry-go-round and be featured in a sidewalk chalk photo shoot.
See more in detail below.
Go to a drive in movie
Visit Mystery Cave in Southern MN
✔️Go to the Children’s museum
Go on a riverboat ride on the St Croix River
Visit Teddy Bear Park
✔️Go to the Minnesota State Fair
Go fishing at the river with dad
Go on a pontoon ride
✔️Go to a birthday party
✔️See a movie in the theater
Put his toes in the ocean
✔️Visit the North Shore of Lake Superior
Go to a Wild game
See a concert
✔️Get a Mohawk
Go for a hike
✔️Go on a road trip
Meet someone famous
✔️Go mini golfing
See a meteor shower
✔️See a rainbow
✔️Go to the zoo
✔️Go to the aquarium
Go on a Ferris wheel
Go on a merry go round
See the fireflies at Grandma and Grandpa’s
Climb the “Rocky” stairs in Philadelphia
✔️Spread joy to a stranger
Do a side walk chalk photo shoot
✔️Try ice cream
✔️See a movie location
✔️Ride a horse
✔️Visit a different state