Tag Archives: Spina Bifida
For Elizabeth Brechtel and her 5-year-old daughter Naomi, the start of Naomi’s kindergarten year brought excitement, anticipation—and a little anxiety. That’s because Naomi has spina bifida, a complex condition that causes partial paralysis, hydrocephalus and other complications.
As Naomi prepared to enter Somerset Heights Elementary, Elizabeth knew her daughter’s engaging personality would aid her transition. But some questions still remained. How would classmates react to Naomi’s differences? How would Naomi handle their questions? Would she fit in?
Similar questions had entered Melissa Zeleny’s mind four years earlier when her daughter Hayden, 8, started school. In the fall of her kindergarten year, Hayden, who has cerebral palsy, came to Gillette for a series of multi-level orthopedic surgeries. After a two week hospital stay, Hayden returned to school — first using a wheelchair, then a walker. She repeated the process a year later.
“As an inpatient at Gillette, Hayden was used to seeing many children in wheelchairs, walkers and braces, and using assistive technology,” recalls Melissa. “But at Somerset, she noticed she was the only child who used these things.”
Hayden, today a third-grader, first met Naomi several years ago—she’s in the same grade as Naomi’s older brother, Xavier. As the girls’ mothers connected and began comparing experiences and stories, they soon learned both girls came to Gillette for treatment.
This year, Hayden had an opportunity to participate in Somerset Heights Elementary’s Big Buddy program, which arranges for an older child to serve as role model to a younger peer. And she knew exactly the student to mentor! She asked Principal Mary Bowman to arrange for her to be Naomi’s Big Buddy, and Bowman happily agreed.
“From taking a little longer to get around school, to falling down more easily, and most importantly, wearing braces, Hayden is thrilled to have a buddy who is ‘just like her,’” says Melissa. An added bonus? The girls have become fast friends.
Cora Gryskiewicz is a spunky, high-energy toddler who loves to “help” her mother, Paula Gryskiewicz, with anything and everything she can. “Cora is my little turkey,” says Paula, lovingly calling Cora by her favorite nickname. “She is always on the go!”
Indeed, Cora’s busy schedule rivals that of most adults. That’s because, along with visits to her neighborhood park and playtime with mommy, Cora receives physical therapy three times per week at Gillette Children’s Specialty Healthcare, where she also sees physicians for help managing a complex disability called spina bifida. Paula discovered Cora would have the condition, which occurs when the spine develops abnormally, when she was just 20 weeks pregnant. It causes complications such as, in Cora’s case, hydrocephalus (fluidon the brain), clubfeet, and lower extremity issues.
When Cora was less than a day old, Dr. Patrick Graupman, a pediatric neurosurgeon at Gillette, performed surgery to close the opening in Cora’s back caused by the condition. Other major surgeries have followed—including an orthopedic procedure next week—which, along with regular physical therapy at Gillette’s Burnsville Clinic, have enabled Cora to walk with assistance of forearm crutches, which she calls her “sticks.” Walking is an especially significant achievement because Cora has very limited feeling in her feet and lower legs.
Paula, who enrolled Cora in physical therapy at Gillette when she was just 4 months old, says that early intervention has been vital to Cora’s independence today. She also credits Cora’s Gillette therapists, PT Stephanie Zigan and PT assistant Amanda Larson, with enabling her to succeed. “I firmly believe that Cora is as mobile as she is today because Stephanie pushes her,” says Paula. “She uses positive reinforcement that makes Cora WANT to work hard!”
“Gillette is like a second family to us,” concludes Paula. “Everyone there is wonderful. They recognize Cora and greet her by name. I love that!”
“They Tell Me ‘Can’t’ and I Hear ‘I Dare You’”
What does Mother’s Day mean? For many, it’s a thoughtful card, a bouquet of flowers, or a celebratory brunch. But for mothers of children with disabilities, it’s an opportunity to reflect on a one-of-a-kind parenting journey. It’s a journey fraught with challenges, to be sure—but more importantly, one filled with extraordinary rewards and small miracles. As we share Mother’s Day stories in the days ahead, we invite you to share your own—and to sign our Pledge to Cure Pity at www.curepity.org. By signing, you’ll join our movement to show the world all that children with disabilities can achieve.
“Each day brings struggles but also laughter, smiles, and always miracles……always,” says Autumn, mother to 7-year-old Kevin, who was born with a severe form of spina bifida. “In the early years, my life was filled with doctors while other moms were at Mommy & Me groups. They were waiting for their baby’s first word, while I was waiting for mine to look me in the eye or sit up. These things came in time, and each was a miracle,” says Autumn.
Soon, Autumn discovered that Kevin had inherited her love of music and rhythm. “His first words were not spoken, they were sung. His love of music has opened a portion of his brain that should technically not be functioning. Am I proud? Yes. Am I surprised? No. For everything he can’t do, look at what he can.”
Autumn says she doesn’t yet know what Kevin’s purpose in this world will be—but she knows how much he’s irrevocably changed her own world. “My role is filled with a clarity and purpose that most moms could only hope for,” she says. “Special needs moms aren’t rock stars, we are rocks. People use the term ‘limitations’ and we hear ‘limitless’. They tell me ‘can’t’ and I hear ‘I dare you.’”