embracing the unexpected trip vickie piepkorn

story by | patricia carlson

People ask Vickie Piepkorn how she does it. What is it like raising a child with special needs?

The best way she has found to describe it is by sharing an essay called “Welcome to Holland.”

Written by Emily Perl Kingsley [the mother of a special-needs child] the essay talks about a person’s excitement for a much anticipated trip to Italy. Bags packed, itinerary planned, ticket bought, plane boarded…Italy bound! Imagine the disbelief when the plane lands in Holland, not Italy. Holland wasn’t the trip planned, but in the end there is a lot of beauty, amazing people and a bounty of blessings. That’s the Holland Vickie knows and she couldn’t imagine living any other way.

Vickie wanted to be a mom ever since she was 9-years-old and her mother brought home her new baby brother.

“I thought, ‘This is fantastic!’” she remembers with a chuckle. “This is my little baby!”

Vickie eagerly settled into her new role as her mother’s helper. Vickie’s dad, Dick Johnson, says it was apparent early on that Vickie was destined for motherhood.

“Kids have always been way, way up on her list,” says Dick. “There’s no doubt about that.”

Vickie put her love of children to work and earned her undergraduate degree in Elementary Education and a master’s in School Counseling. While student teaching, she started dating her husband, Dave, a fellow Fargo North high-school graduate.

“She was beautiful with an outgoing personality!” Dave recalls of Vickie.

The couple married in 1990 and when the time came to expand their family, Vickie was beyond ready.

Alex was born in 1995. Vickie had been teaching for seven years, and now she and Dave made the decision to embrace her role as a full-time mother at home.

“My mom had been a stay-at-home mom and I knew that was what I wanted and needed to do, too,” states Vickie. “I was blessed that I could be home.”

Being married and having a child was “awesome,” says Vickie, her eyes lighting up at those early memories of chubby cheeks and gummy smiles. But she also longed to remain active—in body, mind and spirit. As a teacher Vickie had always been engaged in her school and in her students’ and their families’ lives. As a mom, she wanted to be a part of the mothering community in Fargo. She wanted to meet other moms and their children and be a part of something bigger. So she and a couple of friends started a local group at First Lutheran Church in North Fargo called Mothers of Preschoolers [MOPS], based on an international support agency dedicated to moms and their preschoolers. MOPS groups still meet today at churches all across Fargo-Moorhead, including the original group Vickie and her friends founded.

“I love to be active and motherhood did not change that,” Vickie says. “If anything, it empowered me. I like to be a part of something. I’m not a sideline sitter. I think it’s a good thing and it certainly keeps me busy.” a second son

Vickie’s life was about to get even busier—less than two years after Alex arrived, she became pregnant again.

Will was born in the spring of 1997. He was a big, healthy baby and Vickie and Dave couldn’t believe how lucky they were to have two beautiful sons.

But as Vickie explains how the early months of Will’s life passed, while her chin quivers with the effort of holding back tears, something didn’t seem right.

“It was so deceiving. He looked totally normal. But in my heart I knew almost right away that something was off,” says Vickie, her words thick with emotion.

The months passed by and so did Will’s ability to meet certain milestones. He didn’t look around like other babies. He couldn’t sit up. Although his markers were all within normal range, Vickie couldn’t shake her concerns.

“One day, I wrote on a piece of snowman paper—it’s silly the details I remember—all the things between six and nine months that Will couldn’t do,” says Vickie, tears finally spilling down her cheeks. “Our doctor said, ‘Huh. I think we need to do some checking.’”

Vickie didn’t know it yet, but she had just landed in Holland.

A New Community

“He had, and has, all of his parts and he looked so normal that I swear he was going to be normal,” says Vickie. “But doctors told us he would more than likely have developmental delays and would not likely develop like other children.”

Compounding the news of Will’s special needs was the harsh truth of his condition. Doctors had no diagnosis. The only conclusion they had was based on the results of an MRI showing abnormal white brain matter that would most likely translate into developmental delays.

Doctors told the Piepkorns Will’s developmental delays would involve his verbal language skills, his eyesight and his muscles. But Dave and Vickie were encouraged to start Will in therapy immediately to help those abilities he did have.

Under that amount of stress and concern, Vickie could have withdrawn from her family and friends. She could have felt isolated and alone, as so many parents do when they learn their child has special needs; but that’s not Vickie. She’s a fighter. She’d take the boys to MOPS, where she could engage in grown-up conversations with other moms and let her children play. She arranged play dates for Alex. As much as possible, she encouraged her sons to play together. She researched heaps of holistic and naturalistic treatments and found tons of local therapy agencies who could work with Will and show Vickie how to help him as he grew older.

“When Southeast Early Intervention Services came to my house for the first time it was like a lifeline,” recalls Vickie. “They were the first ones who helped me see I wasn’t living in my own little world. When you go to one-on-one therapy services you don’t get a chance to see other parents and their children with special needs. But Southeast showed me all these cool toys and gadgets designed just for kids like Will so I knew there had to be more. I knew that there were more people in Holland just like me!”

Just as she had felt as a rookie mom taking Alex to MOPS, Vickie felt part of a community and she wanted to know more and do more to stay involved with other parents raising children with special needs. So she joined the Experienced Parent Program support group offered through Southeast Human Services.

“I met parents whose kids had life-threatening complications. Or who had articulation problems. Or were born without an arm. It was such a huge variety,” says Vickie.

It was through that support group that Vickie developed some of her closest friends, like Brenda Schmid of Fargo, whose daughter Hannah also has special needs.

“As she spoke about Will she focused on the things he was able to do,” recounts Brenda. “As she continued to describe some of the milestones he had not met yet, she began to cry. My heart hurt for her as I felt her same grief, fear and pain.”

Brenda says she and Vickie grew especially close because their children were the same age, and as moms they had a similar outlook on life and parenting.

“When someone asks what is ‘wrong with her,’ I simply say nothing is ‘wrong with her,’ this is how God made my daughter and God doesn’t make mistakes. I don’t like her to hear me talk about her medical condition and disabilities, because that is not who she is, it is what she has,” explains Brenda. “It is important that our children are confident and comfortable with who they are. And they are probably some of the most confident, happy and peaceful souls you will ever meet.”

The support group and early intervention therapy agencies gave Vickie her first foray into the world of special-needs parenting. She embraced every moment, every learning experience, every new type of therapy, every parent’s story. She was learning to love Holland.

Advocate

As Will got older Vickie became increasingly interested in advocating for special-needs families. She knew firsthand the TRUST it took to load her son onto a school bus and hope that the driver and aid could, and would, meet his needs. She understood the FAITH parents had to have in their child’s teachers, paras, other school staff and students that their child would be treated well throughout the day. She recognized the importance of a strong, steady SUPPORT system for families. She grasped the FEAR families faced, especially if their child was non-verbal and non-mobile like Will.

“He and many of his friends are vulnerable. They are not able to speak for themselves, care for themselves or defend themselves. They, and we, rely on others to do this for them. This presents a whole new set of challenges and a whole new level of trust,” says Vickie. For all of those reasons, Vickie decided she couldn’t let another family of a special-needs child fall through the cracks. She not only wanted to be a voice for Will, but a voice for all special-needs families. She started small, joining the Experienced Parent Program at Southeast so she could help mentor other families walking through the door for the first time.

“It was great!” says Vickie. “I was like, ‘I’m the veteran now! Will’s five!’ Families could ask us all sorts of questions and we could help them navigate the information out there.”

She took Will to sessions at Riding On Angels’ Wings, a non-profit therapeutic horseback riding program based in Felton, MN. And then Vickie was introduced to the folks in Moorhead behind Hope, Inc., whose mission “is to provide mobility, educational and recreational opportunities for children and young adults with mobility challenges and their families.”

“Talk about an amazing experience,” Vickie says. “They had bikes, walkers, anything to get kids moving. And it introduced us to a whole new, cool set of people.”

One of those people is Kevin Anderson, who works for the Moorhead School District as an Occupational Therapist and teacher for students with physical and health disabilities. He remembers the first time he met Vickie.

“She was so eager to provide movement opportunities for Will and she was actively involved in activities,” says Kevin. “While some parents came with hesitation and caution, Vickie was extremely enthusiastic.”

That enthusiasm came in handy when some of the original members of Hope, Inc., including Kevin and Adair Grommesh and Jim Stanke, wanted to expand the program to offer year-round activities for families. The families who had benefitted from the program, like the Piepkorns, jumped on board to raise awareness and funds.

Vickie says she couldn’t imagine not giving back to a program that had done so much for her son and her family.

“I really believe in the mission of Hope, Inc., to provide sports and recreational equipment for kids with mobility challenges and their families,” explains Vickie. “The program Hope, Inc. has developed is huge. Swimming. Sled Hockey. Fashion shows. Soccer. Even a play with singing and costumes. Anything that comes up, our families are like, ‘Let’s try it!’”

Several years ago Vickie expanded her outreach with the program by serving as a board member of Hope, Inc., and for the past two years, she has been President. Kevin says Hope, Inc. is lucky to have such a vivacious and tenacious advocate.

“I am most impressed by Vickie’s infectious personality and positivity. Despite the challenges of raising a son with significant physical and developmental disabilities, she is always willing to volunteer her time and advocate for children and families affected by disability.”

Just because Will is now a teenager doesn’t mean Vickie is slowing down anytime soon. If anything, her friend Brenda says, Vickie is more determined than ever to make sure other kids with special needs who are coming up the ranks get even better access to activities and programs than Will had when he was growing up.

“These are groups she never dreamed she would be involved with until she had Will and he introduced her

Will visits TNT weekly through his curriculum with Fargo Public Schools. Nate allows Will the opportunity to climb, crash, swing and jump just like any kid. Vickie loves the exercise that Will gets to experience at TNT and says Nate has made her a true believer in the benefits of physical movement for all children. For his part, Nate says Vickie is making an impact every day on the special-needs community across Fargo-Moorhead and families are benefitting whether they know her or not.

“Vickie wants the best for every child, and to do so she wants to impact the present and future,” says Nate. “She is involved to help parents understand what is available to them and their children, and help guide organizations in their programs. We as community organizations need involved parents like Vickie to further our impact.”

A Diagnosis

For 14 years, Vickie, Dave, Alex and Will lived without a diagnosis for his condition. Then two years ago doctors approached the Piepkorns about meeting with a new geneticist at Sanford Health. Although not having a diagnosis hadn’t weighed very heavily on her heart, Vickie agreed to give it a try.

“We’ve never been able to narrow the specifics down on what Will had so what did we have to lose?” she remembers thinking.

to the world of special needs,” says Brenda. “She does it because she loves Will and wants him to have the best life possible, filled with opportunity.”

For instance, when Kevin proposed a research study at TNT Fitness, on the benefits of physical activity for children suffering from mobility challenges, Vickie jumped at the chance to get Will involved. Her willingness to be a part of it introduced Vickie to yet another agency and group of people who are devoted to enhancing the lives of special-needs families.

Nate Hendrickson is one of the instructors at TNT Fitness. He was immediately blown away by Vickie’s willingness to try new things and think outside the box.

“I have never heard her say, ‘Will can’t do that,’” says Nate. “She is about taking her experiences and using them to improve the future for Will and all kids.”

Vickie has been equally impressed with TNT Fitness and their staff. “Their mission is truly to help all children of all abilities.”

Several tests later they finally had an answer. Will has LOMGNT1, which is a complicated acronym for an extremely rare recessive genetic disorder. It’s essentially a neuromuscular disease; the closest associated disease is congenital muscular dystrophy. Vickie and Dave are both carriers of this recessive gene and they had a one-in-four chance of creating a child with LOMGNT1. Alex does not have it, but he could be a carrier.

Did Will’s diagnosis change anything? No.

“I asked, ‘Is it life threatening?’ No. ‘Is there a cure?’ No. ‘Then where do we go from here?’ And that was it,” states Vickie. “I was like, ‘Whew.’ That’s our Will. He’s unique. He’s awesome. Knowing a diagnosis didn’t change that.”

Brothers Bond

Vickie has embraced life in Holland. So, too, have Dave, Alex, and the rest of their extended family.

Vickie’s father says Will has made all of them better people who are more patient, compassionate and understanding.

“I had never been involved with someone that close or within our family who had special needs and Will came along and there was this unbelievable natural flow,” says Dick. “It’s the best thing to happen to our family. I’m sure that my grandkids look at kids with special needs now in an entirely different way than if they hadn’t had Will in their family.”

The bond between the Piepkorn brothers is incredibly tight. Alex is Will’s protector, entertainer and confidant. Vickie says the first thing Alex does when he comes home from school is find Will and talk to him about his day. It warms her heart to know that Will’s condition has not defined his relationship with his brother.

“Will has always just been my brother. He brightens my day every day, no matter what,” explains Alex. “I don’t think anything is wrong with him. I treat him like you would treat any brother. Maybe I’m a little overprotective, though.”

This year, the boys are students together at Fargo North High where Alex is a senior and Will a freshman. When Alex had an opportunity to take a class with his brother, he jumped at the chance.

“The class is called Social Inclusion and we get to spend time together every day and sometimes I can take him out and walk around,” says Alex. “It was very important for me to be with Will at school this year as it is my senior year and I wanted to be with him as much as I could.”

Vickie couldn’t be more proud of the bond between her sons. She’s grateful that Alex was such a trooper during the countless therapy appointments he attended for Will’s sake as a youngster. And she feels blessed that Alex allowed, and allows, her to live a “regular” life as a parent, too, albeit with a unique outlook.

“Having a ‘typical’ child has offered us an amazing opportunity to keep all things in perspective. We don't get too worked up over the everyday types of situations,” says Vickie. Will helps us to keep the important things in perspective.” life in holland

So what’s life really like in Holland, anyway?

A roller coaster, that’s for sure.

At first Vickie felt frightened, unsure, isolated.