Jeanine: I like to think my life has really come full circle. My mom’s family has been in Augusta for generations and now we’re back in Augusta.
Jaidan and Jeanine Nugent | Augusta, WI
Jeanine: In April 2013 I had taken a break from teaching to work on my Masters so I could become a Director of Special Education. We had just returned from a trip to Arizona when Jaidan started to not feel well. She wasn’t running a fever at home, but I was worried she may become dehydrated so took her to the Emergency Room in Rice Lake.
Upon arrival at the ER, we were immediately taken back to a room where the wonderful staff and medical team quickly realized she wasn’t doing well. Her blood pressure was around 50/30, her heart rate was at 212, oxygen at 38% and she had a temperature of 107 degrees. She was airlifted to St. Paul Children’s in Minnesota where she was put into a medically induced coma for 15 days.
I always say that God must have put a stupidity bubble around me because while she was in the ER I saw them intubating her and putting cardiac panels on her and everything, and I remember sitting there thinking, ‘Is someone going to give her saline so we can go home soon?’ I just really didn’t understand the seriousness of what was going on.
Jaidan: All I remember is that my room was full of frogs, stuffed frogs, and gifts from people.
Jeanine: It’s true. Her room was completely full of frogs that people sent because it was part of our mantra. People were always saying they were sending prayers, but when you are in a Pediatric Intensive Care Unit (PICU) you become connected with families and individuals of various cultures and beliefs. For good or bad, Christianity can sometimes be triggering for a lot of different people. It was my belief that nobody should be even more triggered when their child is in the PICU, so her friends adopted the mantra of frog, which stands for…
Jaidan: Fully Rely on God.
Jeanine: It can also be Fully Rely on Good, or Fully Rely on Grace, or whatever you want it to be. And so when we say it was stuffed with frogs, it was packed. We left the hospital with three garbage bags full of frogs. It was a fun way to connect with so many people of different beliefs from around the world who wanted to send their blessings.
She spent seven weeks at Children’s Minnesota, and then we went to Gillette Children’s Hospital for rehab for nine weeks.
Jaidan: But Mom liked Children’s better than Gillette.
Jeanine: That’s true. I just felt like Children’s did a really good job of realizing the value of having the parent as part of the medical team. Gillette does a really good job in situations that are more routine. But with Jaidan, nobody really knew what was going on with her. They would think they had it figured out, but then something else would come up. There was never a neat box for her, and they struggled with how to handle that.
From that experience, I really learned how necessary it is to have parents as part of the medical team. I interview doctors now before they treat her, and ask for a different one if I don’t think they’re a good fit. I know now that that’s an okay thing to do. It doesn’t mean that the doctor is bad, it just means maybe they’re not the right one for us.
When we developed her medical team after she turned eighteen, I knew the endocrinologist that I wanted. I went to him and said, ‘Okay, now we know the other specialist she’s going to need, who do you want to work with?’ So I have learned a lot of advocacy through all of this. I think sometimes people view advocates as being kind of pushy, like it’s a negative thing, but really, it’s not. It’s a good thing. So since that terrible day in 2013, I have become a great advocate.
Jeanine: Once I finally figured out we weren't just waiting for saline and realized just how serious it was, I knew that going home we were going to need resources.
Jeanine: I didn’t know what resources those were, but being a special ed teacher, I knew there were programs out there that could help us. So I called Barron County Health and Human Services, and I remember saying, ‘I don’t know who I need to talk to. I don’t know what programs I need. I don’t know what programs are out there. Put me on all of them.’ We’ll figure it out later because I also know there are waiting lists for everything.’
We got her onto the Children’s Long-Term Support (CLTS) Waiver that would pay for respite for us. Our house had stairs that she was not going to be able to do coming home, so they modified it and we turned the garage into a bedroom and put a handicap-accessible bathroom down there. I realized afterward that there are so many people in need who don’t realize there are programs like that out there.
Jaidan was a neurotypical child for the first eleven years of her life, but the fever caused a pretty significant TBI, or traumatic brain injury. At the time we didn’t know what happened, but now we think that Jaidan went into an adrenal crisis, which caused the fever in the first place.
The way the doctors explained it to me is that the TBI has caused some delays between Jaidan’s process of thinking about what she wants to say, and her ability to physically say it. Her teachers were always surprised by how smart she was. All of a sudden, she’d come out with something that was absolutely on the mark, but it just took her a little while longer to say it out loud. We got really lucky living in Cumberland. The school adapted to her and she had a good experience going to school.
Jaidan: Yeah. I did plays and concerts and forensics at school. I was in the Secret Garden, Alice in Wonderland, and Little Mermaid.
Janine: When Jaidan turned 17 ½ we had to start getting everything in place to secure her guardianship. Some people who survive a brain injury are unable to manage all the things that are necessary for their physical health and safety. This was the case for Jaidan. While it’s said that “In Wisconsin, people under guardianship retain the right to vote unless the court expressly removes that right” our experience, and that of many of our friends was that that right was removed by default At first, I didn’t think it was a big deal, but Jaidan really wanted to vote. So we asked about it and were told, ‘Well, you have to talk with a judge. They’re going to want to know how you’re going to ensure that this is Jaidan’s vote and not just another vote for you.’ We needed to show that Jaidan could cognitively understand the voting system and explain how she would decide who to vote for to the judge.
Jaidan: I asked my uncles, aunt and grandpa, who are you voting for? What is your person going to do? And they can only talk about why they like the person, but they can’t talk bad about the other person.
Jeanine: That’s what she told the judge. I told the judge that for good or bad, we have a very large family with varying political opinions. Nobody gets uninvited from holidays. We can discuss politics without yelling or screaming, and we respect other people’s points of view. So Jaidan talks to lots of people, listens, and over time hears a lot of opinions. She and Grandpa like voting together so they go over the ballot on My Vote Wisconsin to see who is running and to determine if she needs to find out any additional information before she decides who she is going to vote for or how she is going to vote for a specific topic.
I have spoken with Jaidan about the fact that just because people are voting for someone else, it doesn’t make them bad. People have different things that are important in their lives. Things that may be our top priority might not be the top priority for someone else.
Jaidan: I just want to make sure that everything is safe for me and the people I love. In Augusta, there were some potholes that made it hard for me and Grandpa to take our walks. I said something to the Mayor and he worked with the city to get them fixed. If you don’t talk to people or vote things can’t get better.
Jeanine: And unfortunately, with the way the laws are written if a person with disabilities wants to work or do things for their own personal fulfillment and enjoyment, it can often mean that they lose access to essential benefits and services, or the ability to be taken care of. So voting and advocacy is important to us.
Jaidan’s Traumatic Brain Injury (TBI), makes it difficult for her to handle artificial fragrance oils found in things like lotions, soaps, candles, and wax melts.
Jeanine: This and her love of arts and crafts led to her experimenting with essential oil lotion bars and wax melts and the start of ‘Miss Jaidan’s Creations’.
We met Nick and his mom Jennifer from Nick’s Dog Treats while participating in Augusta’s Annual Fall Fest Vendor event in October 2020. When we moved back to Augusta in November we kept running into each other and quickly became close friends.
Jennifer had worked as a job coach and saw how many people with special needs didn’t have access to meaningful employment, meaning the ability to do something that makes them proud. Nick has Cerebral Palsy and uses a wheelchair, making her even more concerned that he would have a hard time gaining employment, so they started Nick’s Dog Treats and opened a shop.
In 2022, Jaidan and I opened Journey Mercantile, a maker’s market, in Fall Creek, WI selling locally made items including Nick’s dog treats. In 2023 my father was diagnosed with cancer and Jennifer saw me struggling to keep the shop open and be a full-time caregiver, now for two people, and offered up an amazing opportunity. Close the shop in Fall Creek and bring our products to Nick’s Dog Treats & Coffee Brew’s new storefront. The store is thriving and between Jennifer’s experience as a job coach, and my teaching background we’ve created an amazing team, all with various ability levels and strengths. What do you do at Nick’s, Jaidan?
Jaidan: It’s more like, what don’t I do at Nick’s? I do everything. I help make dog treats, I help bag dog treats, I help put stickers on dog treats, I help bag coffee.
Jeanine: It’s a little bit of everything. Jennifer and I have coined the phrase co-caregiving as we literally have a shared Google calendar with everyone’s appointments on it so we can determine who will be running people to appointments, picking people up, working the shop, delivering packages, etc. Connecting with someone who understands the emotional and physical aspects of being a caregiver has been amazing for us both, especially when we can see the other needs a break or help many times before they even realize it themselves.
Jaidan: I also like to bake. I bake gluten-free and dairy-free because I am lactose intolerant, and my friend Autumn has Celiac’s.
Jeanine: Probably the recipe that everybody loves the most is her pumpkin cranberry white chocolate chip muffin. It’s phenomenal. We try to use ingredients that are easy to find at your local store, or things that you’d have at home already, and things that aren’t too expensive. The other recipe that people always like is,
Jaidan: My Chex mix. I want to write a cookbook, too.
Jeanine: Everyone is always asking for her recipes, so we are working on getting them uploaded to her blog. She’s good with technology, so it’s something she can really do with little assistance, which is great because I always seem to run out of hours in the day, but Jaidan is good at filling her time.
Jaidan: I just started making my own earrings that we are going to start selling.
Jeanine: She is also very involved with volunteering and is actually a fifth-generation Augusta Lion’s Club member.
Jaidan: I help with Bingo, and do Meals on Wheels, and help with Bean and Bacon days.
Jeanine: That’s like a community festival because we have a huge Bush’s Beans plant here.
Jaidan: And I exercise at the community center.
Jeanine: It’s actually the Augusta Senior Center, but Jaidan started going for chair aerobics and has helped them transform the energy of that place to feel more like a community center for all ages.
Jaidan: I like the chair aerobics because it’s nice and easy. Usually, when I try to do each exercise at home, it’s go, go, go, go, go. But the chair exercise is not really fast-paced. And I get to be with other people. I’m also the counter in the class counting the exercises.
Jeanine: If you don’t count, what happens?
Jaidan: They go, “It’s one, two, three, okay. What’s the count? Where was I? Two, three, five?”
Jeanine: She has her little community of people there, too, and everybody is really great. It’s nice because the couple of times that Jaidan has been in the hospital or something, they always call me early in the morning to get the Jaidan update so they can tell the ladies from class.
I love the intergenerational relationships she is building and the things they can teach each other. I think that is something that is starting to fade in our society. I love that she is such an active member in building this community, something not everyone expects from her.”
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“Everybody is always surprised by Jaidan.
Jeanine: Once, a couple of months into Jaidan’s hospital stay, I was talking to the emergency room doctor who admitted her on that first night and he said, ‘I didn’t expect to see her the next day when I got there. We all realized that you were not understanding how serious this was, and we conferenced about whether to tell you. But we agreed that we didn’t think you’d be making any different decisions than what you were, and we were doing everything medically that we could.’
And in the hospital, everybody who walked into her room would come out saying, ‘There’s just something positive in there.’ The chaplain at the hospital even used to come back after her rounds just to sit with Jaidan. She said, ‘I don’t know how to explain it, but there’s something very peaceful about your daughter.’
The doctors said that they didn’t know how much of her recovery was medical and how much was positive energy or prayers or whatever you want to call it.
Jaidan: Or the puppies that came over. They would be on my bed for puppy therapy.
Jeanine: When you have experiences like Jaidan’s, you start to realize what you can control in life and what you can’t. We have been through a lot of really difficult stuff with Jaidan’s health and my parents’ health, as well. I have always been a control person, but going through all this made me realize that you can’t control these things. But at the same time, it has taught me that positivity may not fix it, but it won’t hurt either. But a negative attitude will. It’s just impossible to be crabby around Jaidan. She’s just happy.
Jaidan: I’m happy just being here. I especially love baking and making my essential oil lotion bars and wax melts. Every time we go to the hospital, I get medicine and they take really good care of me. And I say, ‘Sorry about my mom.’
Jeanine: In the hospitals, I can get a little bit neurotic, but Jaidan takes a basket of the lotion bars for the nurses with a note that says, ‘Thank you for taking care of me. Sorry about my mom.’
You can see that in the way she interacts with family as well. Jaidan loves having all our family around, but she also likes having things calmer, so she will get excited when family is coming over, but when they arrive, she will go to her room when it becomes too much. We have learned that that’s okay. She still loves having the energy around, it’s just what she needs to do. And it doesn’t mean she’s sad. She’s fine with it.
Jaidan: And I hang out with my friend Autumn a lot.
Jeanine: Autumn has been Jaidan’s best friend since they were in Kindergarten. We always laugh because often when we would go pick up Autumn, she’d get in the car and say, ‘So, are we pretending this is just for a couple of hours?’ It always turned into a sleepover. This was quickly followed up with, ‘Are we pretending it’s just going to be us, or should we go pick up the rest of them now, too?’
So our house was the one where all of the friends hung out. Jaidan likes things calmer, so her friends knew that she would go to bed at 8:30 or 9 o’clock, and then they just did their own things after that. They were cool with that, so it was fun for everyone. The next morning, Jaidan got up early, waited for them to wake up, and then we all went to a coffee shop together. Her friends have always just adapted, and it has been great.
Jaidan: I like traveling with my mom, too.
Jeanine: We love going on road trips and traveling. We liked Arizona, Door County, and Myrtle Beach. Jaidan has been to forty-five states. We went to Hawaii when she was little, but we have found that air travel seems to bring on the adrenal failure, so we just do road trips now.
Jaidan: We listen to a lot of audiobooks, and I like going on ghost tours and learning about the history of the places.
Jeanine: So we do a lot of traveling, coffee shopping, and taking selfies everywhere we go, and we love it. We have a great time and a fulfilling life.
It’s interesting because when people hear about Jaidan, they’ll often say, ‘Oh, I’m so sorry.’ And obviously I wouldn’t wish it on anybody, but at the same time, I look at the role she has played in so many people’s lives and it’s almost like God or the universe said, ‘We need Jaidan in this role.’ So even though this is not the path we intended, it is such the right life for us. This is absolutely where we are supposed to be in this world, and this is exactly what we’re supposed to be doing. I can’t imagine anything else.
Jaidan: And most important, FROG.
Jaidan and Jeanine’s story was produced by Alexandria Delcourt. You can find Miss Jaidan Creations here and you can find Nicks Dog Treats here.
To learn more about Guardianship and Voting visit this Disability Rights webpage.
Photo one: Jaidan and Nick at Nick’s Dog Treats & Coffee Brew; Photo two: Jaidan and Jeanine after voting; Photo three: Jaidan and Autumn baking in the kitchen; Photo four: Jaidan baking in the kitchen; Photo five: Jaidan, Jeanine, Nick and Jennifer
