Every October marks a month dedicated to spreading awareness for trisomy 21, more commonly referred to as Down syndrome. Down syndrome is a genetic condition in which an extra 21st chromosome is created during fetal development. The presence of the extra chromosome can result in developmental delays and may portray physical characteristics, such as eyes that slant upward, poor muscle tone and small stature. While these traits are considered common among people who have a trisomy 21 diagnosis, they can be present in varying degrees or not at all. Down syndrome is a diagnosis as unique as the person who has it. Every person with Down syndrome is different and no one’s journey is the same. This week, in honor of spreading awareness, three local mothers shared their personal journeys in navigating life with their children who have a trisomy 21 diagnosis.
Mallory Shuck is the mother of Taitym, a spunky 8-year-old enrolled in a full-inclusion classroom in Underwood Public Schools. Shuck learned of her daughter’s Down syndrome diagnosis when Taitym was 3 months old. Shuck had considered the possibility prior to diagnosis, but the reality of it was still a shock, as any chronic medical diagnosis is; however, the shock passed and life moved forward with a beautiful baby girl who brought more to life than Shuck ever imagined. “Everything is celebrated more. Every milestone and everything that may not be a big deal to anyone else, it’s celebrated! Lots of celebrating!”
Angie Polejewski, mother to Joe, 11-year-old Student Council representative at Kennedy Secondary School in Fergus Falls, shared a similar reaction to learning that her son’s trisomy 21 result came back positive. “You mourn the life you thought your child would have, all while feeling guilty because your child is right there,” Angie shared. “It’s like having a first child all over again. You learn a new way of caring for your baby, just like if you were a brand new parent.” Angie emphasized that after the fear of the unknown had passed, Joe was a constant source of joy for her and her family.
Tasheena Fiskum is newer on her journey. Mother to 1-year-old Aaryasan, Tasheena shared that the negative stereotypes had a very brief place in the forefront of her mind, but a moment of clarity when overseeing Angie’s son, Joe, interact with his teacher brought a whole new and overwhelmingly positive outlook into her life. “I saw him run up to his teacher and smile this big smile and I saw that he was happy and living a normal life and I knew everything would be OK,” Tasheena recalled of the experience. “I don’t treat (Aaryasan) any different than my other kids, he’s unique and he’s special and he is the same as any other kid.”
Mallory, Angie and Tasheena compared their individual journeys and, though all quite different, there were many similarities they were all able to share, like the realities of above average doctor visits and learning how to do life with a child who doesn’t develop at the average rate. The overwhelming similarity, though, is the amount of happiness and joy brought to their families by their children with Down syndrome. Each of the women beamed with pride when speaking about their children and their journey so far.
When reflecting on how to best spread Down syndrome awareness, the women agreed that getting to know the people in your community who have Down syndrome and building a relationship with them and their family is the best way to fight back against stereotypes. “Society has set up these stereotypes to hold (people with Down Syndrome) back, but the stereotypes are wrong,” Tasheena shared.
“I can’t tell you the number of people who have told me that, ‘at least (Taitym) will be happy all the time,’” Shuck said, adding with a chuckle that “Taitym is by far my sassiest child!”
“People mean well but they don’t always realize what they are saying,” Shuck explained of her encounters with people.
According to the mothers, spending time with people with Down syndrome and their families, incorrect assumptions are laid to rest and instead of seeing “a person with Down syndrome,” you simply see a person. You simply see Taitym or Joe or Aaryasan, a person, not a diagnosis.
For more information on Down syndrome, visit www.ndss.org or, even better, reach out to members of your community who are walking that path and share the joy of their journeys with them.