It Takes a Village: How a local mom resurrected the courage to advocate for her daughter
The frailty of life and the uncertainty of its circumstances taught Kim Kowalczyk from Elburn, the importance of a robust family support system. At 21, Kim was mentally equipping herself for a life of single motherhood when she discovered her daughter Kailyn was carrying an extra chromosome and would be born with Down Syndrome. Immediately, she recognized her newfound freedom of adulthood would become elusive, quickly replaced by the counsel, dependence, and guidance of her family.
Kailyn was born with esophageal atresia (a condition where the esophagus is disconnected from the stomach). Unsuccessful surgical attempts to correct it occurred when she was 2 days old, and again at a month and a half, resulting in a permanent NG tube. Despite this and some of the characteristic delays many babies with Down Syndrome experience, Kailyn was a healthy and vibrant little girl. Kim, and her parents Kathy and Mike Kowalczyk, quickly adapted to the consistent flux of therapists rotating throughout their home. While entering the toddler stage of increased physical mobility, Kailyn abruptly suffered a unique medical condition that would once again impact the course of Kim’s life.
After losing complete motor control over the duration of two days and an emergency trip to the hospital, followed by a transfer to Rush University Medical Center in Chicago, Kailyn was diagnosed with Symptomatic Atlanto-axial Instability (AAI). An exceptionally rare condition affecting roughly 1% of Down Syndrome patients, it causes ligaments between the upper spine and base of the skull to become limp. Immediate spinal fusion surgery was needed to merge together Kailyn’s first through fourth vertebrae. A portion of her rib was also removed and melded to her spine. Despite minimal arm and leg movements, as well as fleeting facial expressions, AAI permanently eradicated Kailyn of all mobility.
“I slept in her hospital room every night for six months and my parents came by every day after work to have dinner with me and keep me company,” Kim recalls. “They were what kept me going so I could be strong for my daughter. Between my parents and myself, Kailyn would never be left alone while being a resident in the hospital. Someone always had to be there to advocate for her.”
Upon returning home, 24-hour nursing care was required. A hospital bed replaced the living room sofa and a ventilator, suction machine, feeding pump and pole, humidity chambers, and a wheelchair became the room’s accessories. “It is impossible to explain the amount of medical knowledge I had to learn in such a short amount of time. When there was a lapse in nursing, I was the only person who knew how to take care of her.”
For 20 years, this was the environment the family grew accustomed to.
Shortly following her parents' relocation to Elburn in 2017, Kim moved her growing family, which now included a son, Kyle, to Mike and Kathy’s subdivision, allowing her to sustain the level of support she had grown accustomed to. Kim relied on the emotional and physical foundation her parents helped provide. “I always thought I would feel a sense of independence and a little freedom by living some distance from my mom and dad. I quickly discovered how much they were a daily part of our lives and how I really craved being close to them.” A multitude of social and recreational opportunities became available in their new environment.
“Once we moved here a whole new world opened up for us,” Kim recalls. “My son quickly enrolled in the Kaneland Youth Football League and Wasco Baseball, which helped him get to know some of the kids at school. People also seemed to just be so welcoming here. We felt accepted and included right away.”
The special needs program at Kaneland High School exceeded Kim’s expectations in accommodating her daughter. “I was so impressed with the way the teachers went above and beyond to make sure she was successful every day.”
At her new residency, establishing friendships became natural for Kim. The neighborhood book club provided a way to combine her love of reading with having a social outlet every month. “As a single mom, it is very difficult to get time to do things just for yourself and this is perfect because it is located close by at a neighbor’s house.” The Elburn Town and Country Library became one of Kim’s frequented sanctuaries, not only as a form of respite but also as a resource to obtain different books she needed each month.
Thrive Beauty Lounge, a hair salon conveniently located within Kim’s subdivision, allowed her the opportunity to quickly take some time for self-care as well. “Not having to travel to get something like a haircut saves so much precious time for me, since I can barely take a moment to steal away.”
Recreational activities can be limiting when mobility is an obstacle. This can frequently make daily life isolating. Taking Kailyn for walks in public spaces would be one way for Kim to expose her to different places and people. Although intriguing, the beautiful, historic downtown areas surrounding them were difficult to explore when maneuvering a wheelchair. Consequently, Kim preferred taking Kailyn to open events where the entering and exiting of buildings wasn’t a challenge.
“One of Kailyn’s favorite things to do is go to the Geneva Farmer’s Market in the summer. All her senses can be stimulated there, which visibly uplifts her spirit.”
Kailyn’s aging out of the school system coincided with the abrupt nursing shortage that the family was experiencing. Kim soon had to decipher what the optimal living situation looked like for her daughter. Needing the 24-hour support of a medical professional required more care than Kim alone could dispense. After researching a multitude of live-in care facilities, Kailyn was eventually placed at Alden Village in Bloomingdale.
Originally the prospect of putting Kailyn somewhere besides with family seemed unfathomable, but Kim soon acknowledged the decision as a necessity, and ultimately, a blessing. "I couldn’t imagine not being with her every night and day. That was my life for over 20 years. Once she was moved in, however, I witnessed the attention and care she was getting, not to mention the social aspect of having roommates and others her age nearby.”
Shortly after, the COVID-19 pandemic sent the entire country, including the facility, into lockdown. At first devastated thinking Kailyn may feel as if Kim abandoned her, she soon became grateful that the timeline progressed in that way. “Her immune system was so fragile, so if she hadn’t been confined to a place where she was surrounded by medical professionals, with no exposure to other people, I hate to think what could have happened. I called and FaceTimed everyday with her so she could still somehow see me and hear my voice.”
With the COVID restrictions currently lifted, Kim is now able to visit Kailyn whenever she pleases. Enlightened by the numerous pivots her life’s journey has taken, Kim now credits all she went through for helping her establish a fundamental value system. “After everything I have faced, and witnessed my daughter go through, I just don’t become concerned with the little things. When the possibility of losing your child occurs repeatedly, and you see what life is like through her eyes, priorities change and you don’t take things for granted.”
The challenges Kim and her family have encountered enable them to appreciate the uniqueness and sensitivity in others, specifically those with special needs.
Kim believes, “My family’s support is what has gotten me to this point. I truly believe I have been given this experience to learn and grow and help others do the same.”