After passing a curious child at the supermarket, Melissa Schlemmer, a mom of three, was dismayed to hear the child’s mother subdue her curiosity and interest in learning of Melissa’s 8-year-old son, Christopher, who has special needs and is a wheelchair user.
Melissa’s older son, Alexander, was pushing his brother around the store with gusto, grabbing a pineapple and plums from the produce aisle, while a little girl watched Christopher closely and said: “Mom, that looks like a wheelchair.”
Her mother’s instruction to her daughter of “Shhhh… just keep walking,” left Melissa reeling.
The mom hurried both her kids away, leaving Melissa with the fallout: sadness, indignation, and confusion.
In retrospect, Melissa said she wished she would have said that it’s okay to be curious, it’s great to ask questions, and it’s fine if the little girl talks to Christopher herself. In fact, she’s invited.
“He’s a little boy, just like your little boy,” Melissa explained. “He’s sweet and charming with the most adorable grin. He loves books and swinging at the park.”
Melissa believes that in telling a child to just keep walking, a parent is teaching them to ignore someone with a visible difference. “You taught her not to see my son,” Melissa said.
Melissa from Forest Lake, Minnesota, had a blissfully uneventful second pregnancy but began to worry about baby Christopher—who was born on April 20, 2013—when his eyes crossed sporadically, he appeared weak, and he failed to gain weight.
The little boy, who had “failure to thrive,” was then sent for a sedated MRI. At just a few months old, Christopher was diagnosed with a metabolic disorder, PMM2 Congenital Disorder of Glycosylation.
Christopher’s neurologist urged Melissa not to Google it.
“Like many disorders, the range of severity is vast,” Melissa said. “It was hard for [the neurologist] to predict what his life would be like. She told us to allow him to tell his own story, but we knew the likelihood of a feeding tube, seizures, a wheelchair, more therapies, and many more specialists would be added to his life.”
However, instead of choosing “flight,” Melissa chose to fight hard for her baby boy.
“I wanted to fight for him to be the best he could be, whatever it meant,” Melissa said. “That doesn’t mean I didn’t mourn the loss of the life we planned for him. I did. I cried.”
Upon seeing other children of Christopher’s age achieve their milestones, Melissa would envision her son being able to do all those things, and tear up. The loving mom quit her job to care for her son full time so that she could take him to the many specialists and therapy appointments.
Having a medically fragile child has surely changed Melissa and her family’s perspectives on life completely. While caring for her son is “exhausting and lonely,” Melissa claims she didn’t know gratitude until he came along.
At the age of 8, Christopher cannot speak or walk and uses a wheelchair. He has been fed through a G-J tube for over five years now and has vision and hearing disorders. He has suffered several life-threatening seizures through his short course of life. Yet he’s happy, said Melissa. He uses a bespoke communication device, he’s cheeky, hardworking, and loves to read. He has also begun to explore standing and walking with the help of a frame.
Melissa continues documenting Christopher’s journey on Instagram.
Considering the parents of able-bodied children, Melissa claims to understand their hesitation. “I can empathize with being worried about saying something offensive,” she shared. “There are far too many lists of, ‘Don’t ask this, don’t ask that,’ when it comes to talking to a parent of a child with a disability.”
However, if parents can be brave enough to ask the taboo questions with a genuine desire to learn, Melissa added, then she will extend grace and help educate on how to accept, love, and include disabled people.
“Please, help your kids make sense of it all, because if you don’t, who will?” Melissa implored. “I need them to understand because they’ll be the change makers in this world for my son.”