Moved to action by loss of baby
Benton Degerstrom only lived on this earth for 25 days, yet his tiny, courageous little spirit will likely be felt for years to come even by those who never knew him.
Parents Amy and Sean of Lake Park have recently launched a charitable foundation in Benny’s name called “Benton’s Hope.”
“We started thinking about this even while Benny was still alive,” said Amy, sitting next to Sean as the both of them choked back tears that always seem to be mixed with a smile when talking about Benny.
For the Degerstroms, paying it back with a local charity is a way to honor their son and the community he was born into.
When Benton was born on September 3, 2013 in Detroit Lakes, doctors knew almost immediately that something was wrong.
“He was having a lot of trouble breathing,” said Amy, who says her baby was transferred to Fargo where he stayed for a week while doctors tried to figure out what was wrong with him.
Amy, who had a cesarean section, was not allowed to go with him to Fargo because she herself had to be cleared from surgery. That took five days.
Sean would carry the weight of the world on his shoulders as he drove back and forth between Detroit Lakes where Amy was recovering and Fargo where Benton was struggling.
“The doctors in Fargo said they had never seen anything like it before,” said Sean. “And these were doctors that had practiced 40, 50 years, and they were calling all over the country trying to figure it out.”
Benny was transferred to the Minneapolis Children’s Hospital where a team of doctors began their quest for answers.
They would come Sept. 19 when the Degerstrom’s only child was 16 days old.
“It was a birth defect in his lungs,” said Amy, as Sean added, “It was five different conditions they had never seen together at the same time before.”
With that diagnoses came the news that little Benny wouldn’t live very long.
The Degerstroms say there’s no way for a parent to really take in that information.
“It was just basically… shock,” said Amy, who says although it was never really discussed, she and Sean began filling Benny’s days with nothing but positive vibes and love. Benny was alert and interested in the world around him during those next precious days.
Amy and Sean wanted to create as many memories as they could with their blonde haired little boy.
“Sean listened to the Vikings games and twins games with him, I listened to the Beatles,” said Amy. “We told stories and read books and tried to have as much of our family and friends as we could there because we really wanted them to know him and meet him and see what a cool little dude he was.”
The Degerstroms say it’s amazing how much life a person can fit into 25 days when they know it’s all they’ve got.
“It’s also amazing how much your perspective shifts as well,” said Amy. “And one of the things we took from that is, why wait?”
“Anybody that faces a loved one with a non-recoverable illness, it makes you think, what am I waiting for?”
The Degerstroms didn’t wait to begin planning how they would keep Benny’s sweet, good energy alive.
“It became about… this isn’t the end,” said Sean.
The Degerstroms went through what most parents would consider a nightmare. But for the couple known for their commitment to community, it wasn’t a nightmare they faced alone. That community rallied around them as well.
“As we went through our journey with Benny, the things that helped us the most were those little things,” said Amy, who says so many people showed them acts of kindness like paying their utility bill or giving them a gas card.
“When you’re going through something that is life-changing and traumatic, you don’t want to think about that stuff,” said Amy. “You want to be able to focus on your child and your family.”
When the Degerstroms formed Benton’s Hope, they did it under the umbrella of the Dakota Medical Foundation, which would take care of the paperwork side of running a charitable organization, and they did it with the idea that they would help in a lot of little ways.
“Our goal is to pay it forward for all the kindness we received,” said Sean. “…to help individuals who go through something like we did.”
Benton’s Hope will provide care packages to families of acutely ill babies both during the babies life and if need be, after it.
“A journal, a book, a stuffed animal, some sort of blanket, things for making foot and handprints, and a resource list,” said Amy, who says just having information readily available to parents in the midst of the crisis can be helpful.
The kit will also include little items that the Degerstroms know parents might not think of but might want once they’re at the hospital — things like camera memory cards, gas cards, a list of what to pack and what to expect upon arrival at a NICU.
Funds raised through Benton’s Hope will also go towards special projects designed to help make these parents’ lives go just a little bit smoother during their time of need.
The organization has already raised some money, which will be distributed in the form of little grants.
The first on their list — two iPads that will connect the hospital in Detroit Lakes and Essentia Health NICU in Fargo.
“So if a child is transferred but a parent can’t follow (like in Degerstrom’s case), you can still have that more immediate, real-time contact,” said Amy, who knows how hard it was to not be with Benny for the first five days.
“Sometimes Sean had to make decisions on his own because I wasn’t there, and although we talked on the phone, there is something comforting about getting to see them. And although a lot of people have personal phones that do this, you can’t have them on in the hospital, especially in the NICU.”
The Degerstroms, who are coordinating the efforts with the hospital staffs, should see their gifts up and running sometime this month.
The iPads will already be set up with Skype and Facetime options so that people in crisis don’t have to think about starting up accounts and figuring out how they work.
“The nurses will be trained on how to use them, parents or family members just have to be there to see their people,” said Amy.
“We want to start small and expand,” said Sean, who says the idea is to get several health care facilities in the region connected so that it goes beyond NICU floors and onto other areas of the hospital.
This is the first of many dreams the Degerstroms have for Benton’s Hope.
While the initial focus is on parents of acutely ill babies, the plan is to expand into areas that also help the community in areas like youth sports and health — that is what Sean works in — and arts and history — which Army works in.
Between friends and Essentia Health where Sean works, the couple has a few fundraisers set up.
“We’re also really open to partnering with people who might let us join them in their fundraisers,” said Amy, who adds their organization also has about a dozen volunteers called “Benny’s buddies.”
“And we’re always looking for more buddies,” laughed Amy.
For more information about the fund, call 218-238-5584 or firstname.lastname@example.org.
Contributions can be made online at impactgive-back.org Click on “See nonprofits” and DMF – Benton’s Hope.
“It’s not necessarily that we want to change the world in one fell swoop, but piece by piece we want to give those little pieces of aid that we got,” said Sean, “…to provide comfort where we can provide comfort, help where we can help.”