There is something special about being a parent. And motherhood, well that brings a whole new level of love and joy to a life well lived. The anticipation of new life after nine months of pregnancy, filled with kicks and contemplation is what dreams are made of. Will my child like sports and music? Maybe both? Will my child be just like me, or a whole new person just waiting to introduce themselves? There is mystery and wonder in the waiting. But what about when a child is born with a disability, or is injured at birth? Or is born typical and has a tragic accident out of nowhere? What happens when the happily ever after is disrupted and you find yourself in a situation impossible to plan for?
This is a story of seven women who navigated the past five decades as a group rooted in a shared thread of tragedy but found joy within each other’s company. They created a safe space for sharing feelings, while learning how to live lives that didn’t go as planned. Their lives look different then they dreamed of, but with the love and guidance of a tight circle of friends, they found a way to thrive in the unknown, and create joy within the unexpected.
The Mollys are all mothers. They were brought together by disability, after having children born with disabilities back in the 60s and 70s. While that may not sound like that long ago, keep in mind there is still so much that is unknown when it comes disability care, treatment, and life span. Throw in the ever-changing societal pressures of equity, diversity, and inclusion—and how being accepted is the only real goal—and it becomes clear that raising a child with disabilities back in the 70s was not an easy task. The love was there, but what about the support and understanding? Back in the day parents were told to put children with disabilities in institutions, and many were told to just live life without ever looking back. Can you image being told not to visit your child? Neither can the Mollys.
Who are the Mollys? Vicki Stern, Judy Marder, Pat Glass, Mary Jean Loomis, Dorothy Janota, Joanne Varrey and Karen Pate are all mothers, with varied personalities and interests, and one big thing in common—these mothers had children with disabilities, in time without a lot of resources. Imagine for a moment having a child with a disability and it being decades before Google would allow for easy access to resources, specialists, clinics, care plans and care providers. Now add the human toll and imagine longing for other parents who understood the worries, fear and sadness that accompanies a diagnosis. It was, and still is a lot to manage, and they did it before support groups were a known thing and understood to be beneficial.
The Mollys came together as a frightened group of young mothers, and over the past 50 years have cultivated a close friendship most of us will never understand. They met monthly for decades, and only due to Covid took a break from regular gatherings. They all know life can change on a dime and spent hours in the comfort of a safe space where no topic was off limits. As they sat around the table a few weeks ago at lunch, they laughed as they mentioned they should have bought stock in Kleenex after all the tissues they have used over the years. They are different ages, now ranging from 77-92, come from different backgrounds, and barely had anything in common when they met over 40 years ago. But what unites them is the love they have for their children, and their desire to help their children thrive, while honoring the need to explore the feelings of grief, guilt and overwhelm that goes along with being the parent of a child who needs extra support to live a rich and full life.
Vicki is the mother of Nicole, who was born with a condition it seemed no medical doctors knew how to treat. She immediately kicked into superwoman and became an advocate overnight. She remembers a couple of doctors so uninterested in sharing their knowledge she fired them and asked for better care. Magically she was presented with five resumes the next day and proudly picked the only female doctor to treat her daughter. That doctor asked if she felt guilty about her daughter’s condition, and her response was, “guilt is a manmade emotion.” They worked together and did what they could, but her daughter was not going to recover. Vicki adores the Mollys and loves them for keeping her in their group long after her daughter passed while still a child. She is grateful for the love they give her, and the support she has had for over four decades.
Judy Marder is the mother of Karla, who lives in our Casey Court home. She is very hands on in Karla’s care and brings her home for visits every weekend. Karla has Rett’s Syndrome, and they were part of a nationwide survey that now offers historic data of the condition. Remarkably life expectancy for people with Rett’s is 18, and Karla is now 55. Judy is a current Living Well Board Member and has been very involved in the leadership aspects of the organization and legislative advocacy since Karla became part of the Living Well Family.
Pat Glass is mom to Colleen who lived with Living Well for many years, from the very beginning. Colleen had a large family, all who were dedicated to her happiness. Pat is grateful for both the ongoing support she gets from the Mollys and for knowing that her daughter had a safe place that was dedicated to her care for so many years.
Mary Jean’s daughter Brenda lives at our Upper 55 home and requires extensive daily care. Mary Jean is devoted to her faith and drives people to mass and sends prayer cards to people who request them. She says the Molly’s have special children, which may have forced them to live differently, but not to retreat. She says with a smile, “People are my hobby and just listening to people helps me feel a sense of purpose.” Being with a group of friends and having the support of women who understand her struggles has made her life lighter.
Dorothy’s son Bradly started with Living Well in the very beginning. During Covid his day programs closed, so her other son started bringing him home for visits. Dorothy and her husband were able to enjoy activities and hobbies outside of the home as they were not taking care of a child 24/7. They fell in love with square dancing and pickle ball and are grateful for a place like Living Well as it allowed all of them to have better lives. Their son had a safe and caring place with other children like himself. And they had time to engage in more than round the clock care. With homes like the original Dakota’s Children, the time they spent with their child was quality time, versus stressful and chaotic.
Joanne and her family were a part of the opening of Dakota’s Children as well. She has great business skills and was instrumental in the early years when forming this new model of care. Her husband was also super involved and did a lot of handywork at the early facilities. What makes Joanne unique is that all three of her children were disabled. Yet even with the heavy reality of raising three children with severe needs, Rod Carlson, Living Well COO (who has been with the company for 35 years) says Joanne was always happy and smiling. She was and is a huge cheerleader of the organization. Even after her children died, she was an ally for disability care and inclusion.
Karen is mother to Betsy, who was one of the very first to call Dakota’s Children home. She loved her red headed precocious daughter with all her heart. But she also knew as Betsy grew that she was not going to be able to give her the care she needed with other children at home, and responsibilities to tend to. Betsy cried a lot and needed lots of support as she was unable to move or care for herself. It was a struggle to find a places willing to let families visit when they wanted or spend quality time with their children. So, one day, as they searched for a place to help take care of Betsy, Karen and her husband Galen were told, maybe you should start a place for children like Betsy. So, they did. In less than a year they found funding, a plot of land, and other interested likeminded families desperate for a better way than sending their children to institutions. They became advocates before there were advocates, and with the humbleness of good Midwesterners and the tenacity of parents on a mission, Living Well was born. When talking about the Mollys Karen said with misty eyes, “You ladies saved my life.”
The Mollys are best of friends, even though they are completely different people. They support and love each other with a bond so close it is more like family. They have spent hours on Karen’s boat, even though Mary Jean is afraid of water—for the water is nothing to fear when you know your friends will dive in to save you. And that is in way what they have done for each other over and over and over these past 50 years. They lean into friendship, share their pain and their happiness, and they know that no matter what happens they will always have each other.
The Mollys would not have met had their children been born “typical.” And as much as that may have been an easier life, and this club is not one mothers dream of, just knowing they have so much love surrounding them is stunning. Seeing them lunching together and sharing their story with both smiles and tears, after 50 years of friendship, well that is enough to make anyone dream of a circle of friends so beautiful it makes the journey that much more incredible.
Thank you to these incredible and strong women for sharing their stories, their time, and their photos. Life goes by in a hurry, and they have proven that finding joy in the chaos is hard, but possible.
The Mollys named themselves after the Unsinkable Molly Brown, a socialite and philanthropist who famously made a near empty lifeboat return to look for passengers from the sinking Titanic. They did not all agree on the moniker, but in a way, it is perfect. When life gave these amazing women obstacles, they didn’t choose to sink or swim. Like Molly Brown they opted to try to help others, by paving a new way to care for people with disabilities. We adore these women, their story, and their huge hearts.