My name is Hope Fuglesten. I am 22 years old. I graduated in
2016. I was born with Spina Bifida. I have probably had 20-30 surgeries. The
reason I have gotten through all my surgeries is because of my family and friends
support and encouragement. If I didn’t have them I don’t know where I would be
In my spare time I like to hang out with my niece and nephew,
and family. I also love to go to UND Hockey and basketball games. I also enjoy
volunteering at The Arc, Upper Valley. The employees at The Arc are really
I want to thank Rachel Hafner, and The Arc, Upper Valley for
letting me volunteer.
If you are looking for a place to volunteer, I would
recommend looking in your community.
Back in 1970, I was teaching pediatric nursing at the nursing school at St. Michael’s Hospital in Grand Forks and I took my students on a field trip to the institution in Grafton. None of us was prepared for the devastating experience we had there. After what I saw at the institution, I welcomed the 1980 lawsuit The Arc filed against the state of North Dakota for the appalling way the residents of that institution were treated. Little did I know that in a few years I would have a child with an intellectual disability.
I had a career I loved as a nurse, I had a husband and
four great kids, ages 18, 16, 13 and 11.
And then it happened! We were
surprised to learn that I was pregnant with number 5. It was a shock to our whole family. My 16 year old’s comment was, “Well Mom,
better you than me,” to which I replied, “You got that right”.
Because of my age, we knew that the risk of the baby
having Down syndrome was higher. I
wanted to know if the baby had it so we could get prepared. The kids wanted to know, but my husband said
it didn’t matter to him; we would care for and love the child regardless of
what he/she had, if anything. But the
kids and I prevailed and testing was done.
The test revealed that our baby girl did, indeed, have
Down syndrome. The first few weeks after
the diagnosis were quite devastating for me.
It felt like I was living a nightmare and a black cloud was hanging over
me. My 11 year old was crying one night
and when I asked her what was wrong, she said, “What am I going to do when the
kids tease me about having a r——-d in the family?” So we went into action.
The first thing we did was ban the word r——d from
our vocabulary. We forbid it to be used
anywhere around us. This was in
1984! Long before the R word movement
that is now prevalent.
I knew someone who had been involved in The Arc, Upper
Valley, although I didn’t know much about the organization. So I called the office and asked if they had
any information about Down syndrome.
They sent me a book about Down syndrome which was pretty positive, thank
goodness, because back in the 80s there was a lot of negative information about
people with intellectual disabilities.
Most evenings our family had dinner together and the conversation around
the table often was about Down syndrome.
We looked at pictures of children with Down syndrome and we developed
the one-minute response that the kids could use to explain Down syndrome to
By the time Mary Jo was born, everybody was
ready. My 16 year-old had band practice
the morning she was born. When she
announced that her baby sister had been born that morning, the band played
“Happy Birthday” for her. The kids’
friends brought gifts for the baby and clamored to see her. When Mary Jo was a couple weeks old I brought
her to the 11 year-old’s school and let her take her to her classroom to show
all of her classmates. They were
thrilled. And my husband formed a
special bond with that little girl that was evident until he passed away. Now that he is gone and the four older kids
are living in other parts of the state and country, she is my partner and pal
and keeps me busy.
Although Mary Jo’s Down syndrome brought with it a
number of medical and physical challenges (she has had 4 open heart surgeries
and 8 other surgeries plus numerous other procedures, hospitalizations, etc.)
she is vibrant, busy, active, curious, sometimes lovable, sometimes not as
lovable, but always a fierce self advocate and is actually proud of having Down
When Mary Jo was about 4 months old, I received a call
from The Arc asking if I would serve on a committee. I agreed.
I don’t recall what committee it was, but it was the beginning of a long
association with The Arc.
Over the years
I have served on committees, served on the board of directors for many years, and
served in just about every office on the board including president. I also served as president of the Arc of
North Dakota for several years. I have
testified at the legislature in Bismarck, once bringing Mary Jo along to attend
a dinner with some legislators when we were trying to get the Workers with
Disabilities legislation passed.
I tell everyone that we need to constantly support
organizations like the local, state and national chapters of The Arc and other
organizations that advocate for people with various intellectual
disabilities. Because of their efforts,
life for people with intellectual disabilities is profoundly better than it was
However, as we have seen recently there are always challenges to the benefits and services that are provided to support people with disabilities, usually in the name of state or national budget problems. They try to solve them by decreasing benefits and supports for the most vulnerable in our population.
So to The Arc, Upper Valley I say “Keep on keeping on. We need you.”
Thank you so
much to The Arc, Upper Valley for sponsoring the Wings for All event last
September. This was such an amazing event and came at the best time of our
When I saw the ad for the event, we were a couple months away from my son’s Make-A-Wish trip. My son Oliver is 8 years old and has Down syndrome. He has some very serious health complications that hospitalize him often. Oliver has had many life flight trips, but had never flown for fun, so this airport rehearsal event was perfect for his needs.
believe Wings for All was happening so close to our trip. I signed up
instantly. I knew Oliver would be nervous to fly because he would think he was
going to a hospital. The event itself was so fun. It was so organized and as
close to a real flight as it could be.
Oliver did get
nervous in the tunnel waiting to board plane. He didn’t want to step foot
through the door of the plane. Because this was a practice event, no one got
nervous about him holding up the line, or worrying about dealing with impatient
people who just don’t get how hard stuff like this can be for many people.
calmly to Oliver that it is just chairs in there, he watched his sister go in
and come back out. He slowly peeked through the door and was so excited to see
rows of chairs! He marched right in and found a seat! He was so proud of
Our daughter Piper had never flown at all, so this was so beneficial for her as well. They were both able to explore the plane and meet the crew. I haven’t flown since before 9/11 so there have been so many changes. It was so helpful to know what to expect, how to pack to make things easier, as well as how much time everything will take.
All of this made a world of difference when Oliver’s trip came along. Our Make-A-Wish trip was scheduled to fly out of the Twin Cities. Oliver was nervous, because the airport was packed, but he knew what to do at security. He knew the tunnel wasn’t scary, and marched right on the plane.
Make-A-Wish trip had some ups and downs due to weather and health issues, and
we hope to take the kids on a Disney re-do some day! I hope next time we can
fly out of Grand Forks. Such an asset to have that airport so close. The staff
was so accommodating and friendly!
I would love to do the Wings for All event again, just to keep him familiar with the process in case we ever do get to go somewhere fun again! Thank you so much to all who made this event possible!
Note: Wings for All is one of The Arc of the United States’ national initiatives, an airport “rehearsal” program specially designed for individuals with autism spectrum disorders and other disabilities; their families and aviation professionals.
The Grand Forks Event was
planned and organized by The Arc, Upper Valley and made possible by a generous
award from NDAD’s Faye Gibbens Memorial Grant.
Event partners included Allegiant Air, Grand Forks Regional Airport
Authority, Avflight GFK, and the Transportation Security Administration.
Kim Rygg is a busy woman. Her life is filled with work, volunteering, swimming, bowling and performance art, just to name a few.
Born with Down syndrome, Kim is soft-spoken and polite, but does not hesitate to stand up for herself.
In junior high school, when another student called her the ‘R’ word, she immediately reported it to the school principal.
“It was just awful, “ said Kim.
Fortunately, that’s the only incident of bullying Kim can recall from her time in school.
A few years ago, her doctor told her that she should cut down on the amount of soda she was drinking and exercise more. She showed tremendous willpower by giving up soda completely and exercising two hours a day on the treadmill and stationary bike. The result was a loss of 50 pounds over three years, sparking her interest in fashion.
Kim puts her unique sense of style to work by volunteering weekly at True Colors, an upscale women’s resale and consignment store. She enjoys putting together outfits and dressing the mannequins for display.
But fashion is just one small part of Kim’s life. She participates in swimming and cheerleading through Special Olympics and works at Holy Family – St. Mary’s School, a private K-5 elementary school in Grand Forks, where she assists teachers with projects and helps out in the kitchen.
Kim’s mother, Lois Rygg, says that she never gets bored. “Kim can always find something to do, even if it’s just pulling weeds in the yard.”
She and her mother used to spend most of the summer at the family lake cabin, but that has been reduced to just weekends, due to Kim’s busy schedule.
“Kim isn’t willing to give up any of her activities, so that pretty much dictates when we can be at the lake,” laughed Lois.
Kim has done some international traveling, as well. Along with her mother, she has been to England, France, Italy and Germany. Her favorite memory is of being serenaded during a gondola ride in Venice.
One of Kim’s greatest pleasures is acting and singing in L.I.S.T.E.N. Performing Arts productions. She’s appeared as Sandy in Grease, Dorothy in the Wizard of Oz and Sophie in Mamma Mia.
Stage fright is not in her vocabulary. “She never gets nervous,” says Lois.
Kim is usually at True Colors on Friday afternoons, so stop in to say hello. She will be glad to help you find the perfect handbag or accessory for your own personal style.
Merlin Johnson knows a thing or two about running a hobby farm. He grew up on one, near Lisbon, ND, along
with his parents and two younger siblings.
When he was born, more than seventy years ago, he was very
sick and spent quite some time in the hospital. His parents knew that he was likely to have
developmental delays, which become apparent by the time Merlin was old enough
to attend school.
There were no special education classes back then and after
an attempt at sending Merlin to public school, where he lasted exactly one day,
they chose to keep him at home. Soon,
the authorities began to make periodic visits to the family, pressuring them to
send Merlin to live in the state institution at Grafton.
“It was really intimidating,” said his sister, Peggy
Johnson. “I remember sitting on the
stairs and listening to the conversations.”
Merlin and Peggy’s parents were adamant, however, that they
would not send their son to such a place.
“I didn’t realize the full scope of it until I was an
adult,” Peggy said, “And I’m so proud of my parents for standing up to everyone
and protecting my brother’s rights, because that just wasn’t done back in the
Their father ran his own road maintenance business and kept pigs, sheep, chickens and cows. So instead of spending his days in an institution, Merlin learned all about raising animals. He helped feed the animals, milked cows and helped his father fix things around the farm.
Merlin said his favorite memories from his childhood were
milking the cows and playing with the family dog, Penny.
“Every dog we ever had was named Penny,” laughed his sister,
“Because he could actually pronounce the name.”
Merlin always had an active social life. He went everywhere with his parents and knew
everybody in the small town of Lisbon.
And everybody knew him. He was
very blessed to have enjoyed life to the fullest, a far cry from the
institutional life he may have led if his parents had not been so strongly
opposed to it.
When he was 57 years old, he moved with his mother to Grand
Forks, where his sister was a teacher in the public school system. Not long after, his mother passed away and
his sister assumed legal guardianship of Merlin.
For a while, he lived with Peggy, but she realized he needed
additional supports to become acclimated to the community in the manner he was
accustomed to. She began looking into a
group home setting, but Merlin was completely against it, as he thought it was
too much like a nursing home. He wanted
his own place.
Seemingly at a dead end, one day Peggy ran into an
acquaintance who happened to work at The Arc, Upper Valley, and was invited to
visit the office to learn more about community living options.
“I had no idea what our options were. The Arc was there for me when I needed help.”
One month later, Merlin was living independently in his own
apartment in a 4-plex and soon made friends with the other tenants in the
building. With staff to assist him when
needed, he learned to ride the City Bus and began exploring the community.
Now in his seventies, he is officially retired. He loves to play pool, a pastime he enjoyed
with his father; has been involved in league bowling, takes walks with friends
at Special Olympics and attends L.I.S.T.E.N. dances every Friday night. He likes to take a trips to Devils Lake to go
He says his favorite things about Grand Forks are that it’s
a good town and he has his own home.
Merlin and Peggy have a close sibling relationship. Being seven years older and blessed with an
excellent memory, Merlin recalls when Peggy was born and watching her drink
from a bottle.” Consequently, he still
sometimes refers to her as “Baby,” in a teasing manner.
They enjoy many outings together. On the day they were interviewed for this
story, they were at Perkins for pie and coffee.
Before too long, Merlin was pointing at his watch and reminding Peggy
that he had dinner plans that evening.
Asked about his plans, he simply smiled and said,
“He goes to every pancake feed and benefit in town”, said
And with that, we parted ways. Because you never want to be late for
As an experienced self advocate who has lived independently in the community for over 47 years, Roberta Middagh brings her unique perspective to The Arc, Upper Valley’s board of directors, which she joined in 2017.
Along with her twin brother, Roberta was placed at the Life Skills & Transition Center in Grafton, ND (formerly called the Grafton State School) when she was just three years old. At the age of 19, she left the institution and moved to Grand Forks. Her twin remained at Grafton for another 13 years until he, too, was moved to Grand Forks.
“I didn’t get to see him much after I left Grafton, but when he moved to Grand Forks, I visited him every day at his group home. I still see him almost every day.”
They remain close and keep in touch with their many siblings and nieces and nephews who live all across the United States.
She enjoys a full social life, dining out regularly with friends and taking vacations to Nashville, TN and Branson, MO, among other places.
“Nashville was okay,” she said, “but I liked Branson better.”
Her choice of destinations is no surprise – she is a big fan of country music, particularly Hank Williams Sr. “I like all country music, but mostly the older songs from the 50’s & 60’s.”
Roberta has always been actively involved in the community as a volunteer and advocate. She helps serve the meal every year at the Inter-Agency Picnic, is part of Development Homes Speakers Bureau and worked on Self Advocacy Solutions’ Spread the Word to End the “R” Word Campaign. She helps prepare newsletter mailings for the L.I.S.T.E.N. Center and helps out with other tasks whenever she can.
She worked as a dishwasher at UND Dining Services in the Memorial Union, retiring in April 2016 after 29 years, and although she once had a roommate long ago, she has lived in her own apartment for most of her life in Grand Forks.
“I like my privacy,” she said.
Since retiring, she keeps busy playing cards with her friends at the L.I.S.T.E.N. Center and league bowling on the Development Homes team at Red Ray Lanes. She likes UND sports, but doesn’t attend the games, as she’d rather watch them on TV from the comfort of her home. She also does plastic canvas crafts.
Roberta had knee replacement surgery in 2015, and it barely slowed her down. However, it did prevent her from bowling in the last part of the league season that year, much to her dismay.
During her recuperation, she learned that her close friend, Beverly, whom she had known since childhood, had passed away.
“I knew her since we were little girls in Grafton. We were like sisters,” she said. “When I found out that she passed away, I was too upset to eat dinner that night.”
Losing her friend was difficult and although she still misses her, she cherishes the memories she has of their lifelong friendship.
Roberta is well-connected and knows her way around the community. She knows the city bus routes and although she doesn’t drive, she knows all the streets and intersections and can give incredibly accurate driving directions.
When asked what advice she would have for someone new moving to Grand Forks, she said, “I’d say welcome to Grand Forks. Here’s my phone number. Call me if you need help or just want to talk.”
As a person with a disability, why do I vote? Why does it matter?
I would like to credit a couple of teachers in school, who gave the class, as an assignment, to watch the local news and follow current events. This began my interest in what was happening locally and taught me that I was part of the community I had some say to what was happening.
Since World News comes on before local news, I got in the habit of watching that as well. World News expanded my knowledge of what was happening not only nationally and around the world, it exposed me to politics as well. I liked saying it was my eighth period of the school day, being I was learning. At times, I picked up so much information by watching the news, that it helped me to understand more of what I was also learning at school.
Through this exposure to politics, I learned as a person with a disability I should become familiar with the political aspect, and what is involved in creating policy. Let’s face it, my life depends on various policies, such as education, employment, health care, independent living, etc. I must have a say in each.
In addition to this, I learned what different politicians and political parties represented, and how they may help me as a person with a disability.
I have voted in every election since my eighteenth birthday, even if it has been only one measure. In recent years, I have voted early which typically has shorter lines. Being in North Dakota, you can’t count on the weather on election day.
When I get ready to vote, I spend time both on the internet and listening to different formats, trying to get up to speed on candidates and the issues.
At the polls, I use the machine, where it reads to me, I select my choice and then the machine marks the ballot and sends it back out to me. This offers a great feeling of independence. Every time I go, I feel liberated and like I am a part of society.
Brody and I, along with our families, were blessed with the birth of Miss Everly Anne on September 22, 2015. Everly truly has a heart of gold and brings so much joy to our lives!
She is the perfect mix of sweet and spunky and is the greatest fighter I have ever known. She has taught us more about life than we could have ever imagined.
You see, Everly was born with a very rare genetic syndrome called MMIHS (Megacystis Microcolon Intestinal Hypoperistalsis Syndrome). This is a life threatening syndrome with no present cure (for additional information visit
MMIHS.org). Because of this, she so bravely faces challenges each and everyday.
This is her story.
When I was 26 weeks pregnant, an ultrasound revealed our baby had an enlarged bladder. Weekly ultrasounds and meetings with specialists took place in order to monitor the prognosis. At 39 weeks I was induced in Fargo, North Dakota and Everly graced us with her beautiful presence.
To look at her you would never know that her insides were not working properly. We got to spend the first day like most parents, in complete awe of this little human that we brought into the world. However, the next day challenges presented themselves and we were forced to face some pretty hard truths in the days to come.
Everly began spitting up large amounts of bile. She was quickly admitted into the NICU and had surgery the very next day to fix a meconium
backup in her small intestine. We prayed this would fix our baby and we would be headed home soon. Unfortunately Everly continued to spit up bile and further complications were identified.
Everly spent the next month having various tests administered around the clock to try and uncover why her bladder and intestines were not working properly. After one month in Fargo, Everly was airlifted to the Children’s Hospital in Milwaukee, Wisconsin where they specialize in gastrointestinal care.
It was there that Everly was diagnosed with MMIHS. MMIHS affects the motility of the bladder and intestines and because of this Everly is unable to digest food or drink by mouth. Instead, a tube delivers a nutritional supplement (TPN) directly into her bloodstream through her central line. Her stomach also houses a g-tube for medication administration. We also use this to drain her bile when it exceeds the capacity of her intestines.
An ileostomy was her most recent surgery in order to minimize abdominal bloating, help rid her body of waste, and hopefully improve intestinal motility.
Everly is also catheterized every four hours as her bladder is unable to consistently empty on its own. In addition to her inability to eat and drink, many other challenges exist due to this syndrome. For example, it is not feasible for Everly’s chest area to get wet due to a possible infection in her
central line. Everly’s life depends on existing in an environment that limits her exposure to much that could be detrimental to her health.
Extreme outdoor temperatures are of further concern. Hot weather could result in Everly’s dressings losing adherence to her skin. A total seal is absolutely necessary as the area needs to be kept completely sterile. Cold weather may affect Everly’s tubes in a negative way as well.
A simple cold or virus could result in ER visits and possible hospitals stays. The consequence of a fever/temperature is always a trip there and the outcome has been an admittance more than once. Infections could prove fatal for Everly, being she has a central line running directly to her heart.
Everly has spent 150 plus days in hospitals and has been airlifted three times. Clinic appointments and pharmacy runs occur on a weekly basis, with trips to the children’s hospital taking place every couple months. We have also completed a week long transplant evaluation in Omaha, Nebraska. The medical community is also in contact with us on an almost-daily basis.
At home, Everly requires around-the-clock care and monitoring. Her medical care includes feeding tubes, ostomy bags (empty and change), administering meds, venting her tummy, charting input vs. output, changing fluid amounts, TPN hook up and disconnects, answering and
making calls to set up appointments and get weekly lab results, various medical appointments, central line dressing changes, g-tube replacements, catheterizations, learning new procedures, tummy measurements to check for distention, temperature taking, sponge baths in order to keep
her central line dry, flushing tubes, checking the pump batteries, picking up supplies, researching and analyzing EVERYTHING!
Everly is also hooked up to two pumps throughout the day. Her TPN (nutrition) pump runs for 16 hours a day and fluids for 16-24 hours. Therefore, her cares also include following very closely behind her with sometimes two backpacks weighing up to 13 pounds.
Everly certainly faces many medical challenges on a daily basis but this does not define her. She is a two year old who is so curious about the world! When she is feeling well, you will most likely find her out playing at the park, walking her babies in her toy stroller, going for bike or
stroller rides, attending library, gym bin, dance and music classes, or enjoying preschool (withmom in tow). She also loves to lick foods simply for taste (pickles, peppers, apples, etc.)!
Everly continues to teach us important life lessons with a huge smile on her face! One of the most important lessons she continually reinforces is to live each day to its fullest. She has an amazing love for life, which is something I greatly admire about my daughter.
Hi, my name is Breanna Foy. I have enjoyed working at The Arc, Upper Valley thrift store and True Colors. I like to have things organized. Everything has its’ own place.
My job at these stores is to size and straighten clothes, organize the shoes, find the extra hangers, and I also greet customers. This job is perfect for me. It allows me to use my strengths, work hard, and have fun.
Thank you The Arc, Upper Valley, for this awesome experience.