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Hard Times: 7 brain surgeries and still ‘full of life’

Elizabeth Marsh says it hasn't been the big things that have helped her family get through brain surgeries and heart surgeries. It's a lot of "little things."
Credit: Elizabeth Marsh
Allison Marsh dances in the car to Rachel Platten's "Fight Song."

In this series of hard times and hope, we will hear from Minnesotans about the toughest time in their life – and what got them through.

ZIMMERMAN, Minn. - When Elizabeth Marsh became pregnant with her daughter Allison, she had no idea what the little girl would be up against.

Before Allie was born, Elizabeth found out there was fluid on her daughter’s brain. It's a condition called hydrocephalus. At 7 months old, she needed brain surgery to insert a shunt.

It would be the first of seven brain surgeries, along with related abdominal surgeries. Allie also has developmental delays as a result of an abnormal brain structure.

Elizabeth’s husband, meanwhile, began having cardiac issues and needed a defibrillator put in. At one point, Allie came into Mercy Hospital for seizures while Andrew was already recovering there from one of his procedures.

“From the beginning of our journey we’ve been constantly blessed, and I feel like there’s a presence of just God knowing that we’re struggling,” Elizabeth said.

She backs that up with a story. Once during a particularly hard time, she was at the grocery store. A couple in front of her paid for her entire cart of food.

The woman turned around and told Elizabeth that her husband had wanted to pay because he felt a prompting from God. Somehow, he knew that they needed support.

Credit: Elizabeth Marsh
Elizabeth Marsh with her daughters, Allison and Madison.

Best friends

Allie is now 10. Her sister, Madison, is 8.

The girls' aunt says everyone calls Madison the "little big sister."

"She watches out for her," Sara Rowe said. "She's really taken on the role of supporting her big sister."

Still, Elizabeth says sometimes it can be hard for Madison to understand why her older sister gets so much attention – even if a lot of it's from doctors. Both girls go to therapy to help them process the difficulties that other kids in their age group never experience.

“I feel like their relationship is very strong,” Elizabeth said. Madison is “just her sister’s biggest support."

“They’re best friends," Elizabeth said.

Credit: Elizabeth Marsh
Allison, 10, and her sister Madison, 8, are best friends.

It’s the ‘little things’

Throughout the brain surgeries for Allie and the cardiac surgeries for Andrew, Elizabeth says the things that have helped them get through are not big. They're small.

Andrew's workplace held a bake sale during Allie’s longest hospital stay, 50 days in 2016. Their neighbor came by to pick up their yard waste.

“Little things like that, that help pick you up,” Elizabeth said.

She recalls recently, the first Easter where they couldn’t be with friends and family in person, another family brought them a meal. That same day, the Marsh family brought flowers to a parent in Zimmerman.

“We’ve had support from friends, family, strangers,” she said. “I always feel like overall we’ve had a pretty wonderful experience with everything, even despite our challenges.”

Allie and Madison are involved with an organization called HopeKids, Elizabeth said, and the family also leans on their church community.

“Giving out that love and support and then also accepting it, and realizing that other people want to bless you,” she said.

Credit: Elizabeth Marsh
Allison Marsh just played her fourth season with the Minnesota Wild special needs hockey team in Blaine.

Elizabeth said a lot of their coping methods are practical. They work to focus on the positive. They listen to uplifting music.

“We try to have fun and go out and do things,” she said. “My husband and I like to joke around and laugh.”

Sara Rowe has seen firsthand how Elizabeth's outlook helps her get through.

"Just appreciating the good days," Sara said of her younger sister. "I know she has a lot of good days and she appreciates that. I’ll talk to her and she’ll say 'Hey, we had good day today, learning went well, behaviors went well.'"

Credit: Elizabeth Marsh
Andrew, Elizabeth, Allie and Madison at a Minnesota Wild hockey game.

Sara says the darkest days for the family were the early ones, when there was so much uncertainty around what would happen to Allie.

"We were headed to the hospital before she had one of her surgeries and I thought, to watch your child wheel down the hallway to go have a brain surgery, I can’t imagine how anyone could possibly make it through that without totally losing it," she said.

One of the lessons Sara has learned from her little sister is to face one challenge without worrying about the next one.

"I don’t know how she does it but she gets through it," Sara said. "She faces the challenges unbelievably well and takes one thing at a time, says 'OK, we’re gonna get through this and let’s see what comes next.'"

Credit: Elizabeth Marsh
Elizabeth Marsh, Madison (8) and Allison (10).

‘We’re not in control … and that’s OK’

Right now, Elizabeth’s church is holding its gatherings virtually. But the last time she went in person to a women's group, she remembers feeling a lot of stress. Allison’s next brain surgery was approaching on March 13.

Elizabeth saw a friend there who also has a medically complex child.

“Seeing her fully just let it go and rely on God and just being able to find joy in every single day,” Elizabeth said.

She realized something that day.

“We’re not in control of every situation, and that’s OK,” Elizabeth said.

Elizabeth continues to navigate these difficult days with her family. She is home from work as an LPN. Even though she has child care access as an essential worker, doctors have deemed Allie too high-risk to attend during the COVID-19 pandemic.

“I want us to find hope and joy and love in each thing that we do,” she said. “And it may sound cliché, like I know you’re gonna have bad days, everyone has bad days. But everything could always be worse.”

While on paper Allie has a "slew" of medical challenges, Elizabeth says when they go in to meet with new doctors, she usually hears, "Wow, she's doing amazing."

“She has always been our smiley, happy-go-lucky, just full of life, loving, caring daughter,” Elizabeth said.

Would you like to tell your story of hope and resilience for our Hard Times series? Email ehaavik@kare11.com.

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