‘What keeps you up at night?’

When Janis Strutt’s daughter died unexpectedly, it was the end of something special. A smart, funny, spirited young woman was gone from the world. She had loved Harry Potter, going to church, Taylor Swift, and most of all her family, and now they were left to grieve without her. But in her wake, Morgan, who went to sleep at the age of 25 and never woke up, left behind an enduring legacy of love that will impact countless special needs people and the family members who work tirelessly to give them the support they need. 

Morgan’s Caring Connection recently celebrated its first anniversary, and already it is helping people find answers to some of life’s most difficult questions.

The non-profit organization exists purely to help families figure out how to best take care of their children, and themselves, both now and in the future. It connects them with vital resources and helps maneuver over and around a litany of barriers. For the families of special needs dependents, Morgan’s legacy is one that casts a light of hope in the darkness. 

For Strutt and her wife Kelly, who is Morgan’s biological mother, and siblings Mackenzie and Mason, the story is both universal and intensely personal.

“We started thinking about the challenges we faced,” explained Janis.

For any parent, life is full of questions. Some are goofy or comical. Others are daunting and dark. But for parents with special needs children, the questions persist, and intensify, rather than going away as the family ages. One of the biggest questions these parents face is: “Who will care for my adult child after I die or when I no longer can?” Estate planning is never as important as when human lives hang in the balance.

It’s a simple reality that for parents whose children will not ever be fully able to care for themselves, the story can only end in one of two ways: The first is that the child dies, leaving their parents to mourn. The other is that the parents die, or reach an age where they can no longer care for their adult children, and the family is let loose from its moorings to drift on a sea of uncertainty. These are not particularly cheerful things to think about, but for people who love their special needs children, they are profoundly important issues.

And it’s more than just estate planning. It’s hard to find an area in which Morgan’s Caring Connection doesn’t help families. The organization works to find answers, locate resources, and simplify the constellation of complicated issues many people face. It works to connect people with existing services, which can come in the form of anything from money to specialists.

They hold what they call “empowerment sessions” to share information that families need in a relatable, accessible way. 

“We try to make it conversational, short, to make it palatable,” said Strutt.

“I always try to ask the question: ‘What keeps you up at night?’” she continued. “A lot of things keep parents up at night, and they don’t know where to turn or who to trust.”

Morgan’s Caring Connection offers a directory of places people can turn for answers about healthcare, guardianship, estate planning, home-related services, education, recreation, independence and much, much more. 

Morgan was born with Spina Bifida and Hydrocephalus. As someone with both physical and cognitive disabilities, she would never be fully independent, which meant the entire family had to find ways to support her and help her grow for the entirety of her life.

“I always wanted her to be as independent as she could possibly be in her life,” Strutt said. “I looked at it as her quality of life, and also our quality of life.”

Part of their philosophy was to eschew arbitrary barriers.

“My wife and I never had any boundaries,” she said. “We were never like: ‘Oh, we can’t do that because Morgan’s in a wheelchair.’”

Instead, they met their challenges head on. But even for them, it was complicated and difficult. They know the struggle as well as any family.

Janis originally met Kelly on the dating app Match.com. They have now been married for 17 years, and their union, and their shared love for Morgan and all their children, are at the heart of the nonprofit’s mission.

“The biggest thing that really helps me understand what other parents are going through is I understand the struggles of not being able to figure things out,” Strutt explained.

She said Wisconsin has an array of resources for people, but in a “broken” system, where caseworkers come and go and no agency seems to communicate with any other, it can feel impossible to gain access.

“The bottom line is you don’t know what you don’t know,” said Strutt. “And if you don’t know, how can you advocate? How can you ask the right questions?”

Strutt said the parents of special needs dependents often end up paying for services themselves or don’t get services at all, simply because they can’t figure out how to access funding that exists but seems locked away behind various bureaucratic barriers.

None of this makes caring for a special needs dependent easy. But it does make it easier.  And that is quite a legacy for someone to give to the world after a brief 25 years.

“She was a good kid,” said Strutt of her daughter. “She was feisty.”

“She was a spitfire,” she added. People always told Morgan’s parents the girl was always kind and perpetually smiling. Strutt appreciates the feedback, and she also laughs the knowing laugh of all parents, pointing out that with her own family, Morgan was strong-willed and had no problem testing her parents and her siblings over the years.

“Morgan was always a bright light, is what so many tell us when they meet us or see us since she has passed,” said Strutt. “She was an honorary Hufflepuff as she had a very deep love for Harry Potter. She loved her music and going to Sugar River Church on Sundays.”

“You would never see her without her Apple products, whether it was an iPad, laptop, iPhone, Apple Watch or her headphones. She didn’t go anywhere without most of those things,” Strutt continued. “Mostly, she touched our lives and so many more people than we ever imagined. Just last night Kelly was at Toot & Kate’s and when she went to check out the bartender recognized her last name and said, ‘are you Morgan’s mom?’ and she of course answered, “yes”. She said he went on and on about how much of a bright light Morgan was and how he remembered her from school and how she was missed. We will NEVER know the impact she really had on this world, but we are constantly reminded of that over time when we least expect it.”

“It is because of her and our mission that we have an overwhelming support of volunteers that stand for our mission,” she said. “We are so very lucky that she was so remarkable because that is in part why we are so successful in so many ways.”

Visit www.morganscc.org for more.