Jaden was born with Spina Bifida Myelomeningocele and Hydrocephalus. He went straight from the hospital into the foster care system. DCFS had been trying for days to find foster parents that would care for Jaden when they contacted Ryann. After explaining Jaden’s medical history, she said she wanted to have some time to do research. She decided to take him and at five weeks old, Jaden came home to her.
While in Ryann’s care, Jaden’s birth mom decided she wanted a better life for him. She signed over her rights to Jaden so he would be eligible for adoption. That was a lengthy process but at 17 months old, Ryann legally adopted Jaden.
Jaden was 2 1/2 years old when Chuck and Ryann started dating. After getting married, Chuck also legally adopted Jaden. “I didn’t expect to ever do something like this,” Chuck said. He always planned on having a family the “traditional way” but after meeting Jaden and Ryann, he knew there was something special about both of them.
Having Spina Bifida and the Struggle with Not Being “Normal”
One of the hardest things for Ryann, as a mother, is to see how much Jaden wants to run, jump, and play like other boys his age. He comes to her at times and says, “Mom, how come my legs don’t work?” That is a difficult conversation to have with a young, active little boy.
Jaden is nine-years-old now and has had many surgeries to fix conditions related to Spina Bifida. He has had reconstructive bladder surgery so now he is more independent using the bathroom. This is still hard for him because he can’t use the bathroom like a “normal” boy since he is catheterized through his belly button.
He has had several surgeries to correct his clubbed feet. “Sometimes it’s a 50/50 chance that it will correct them,” Ryann said. As he’s gotten older, Jaden has developed scoliosis. Chuck is a physical therapist so he is regularly able to work with Jaden one-on-one. In Chuck’s experience, children with Spina Bifida who use crutches or a walker are happier than children who are wheelchair bound. Because of this, they encouraged Jaden to use crutches at an early age.
Jaden was also born with hydrocephalus which means he has a shunt to drain the fluid from his brain.
Never Give Up Despite Spina Bifida Diagnosis
Jaden’s disability doesn’t prevent him from wanting to go on adventures; he doesn’t back down from a hike, going down waterslides, or playing sports. He has participated in wheelchair basketball and plays soccer with his crutches, which he loves. Ryann and Chuck teach Jaden “that there are other things that he can do in his own way and not have to be like the other children,” Ryann said.
Chuck loves to do more “high risk” activities with Jaden because that is what nine-year-old boys like to do. “He might not be able to participate like normal boys but he still has the same interests,” Chuck said.
Helping Extended Family Understand Special Needs
“It’s interesting to see how the family dynamics have changed,” Chuck said. Before Jaden became part of the family, there were some grandkids and great-grandkids that were independent and could do everything themselves. So when Jaden came along, many family members stepped up and accepted the challenge to learn more about Spina Bifida.
“They are more positive and accepting,” Ryann said. His determination and positive attitude is something they all learn from. Most importantly, “his joys and accomplishments are hoorah moments for us,” said Ryann.
To help Jaden feel like his cousins, many family members stock their place with the medical supplies that Jaden needs for when he spends time at their home. Because of their efforts, Jaden doesn’t feel like a burden or an outcast when he is with his cousins.
Words of Advice: “Don’t be Scared”
It is important to have realistic expectations of what your child’s life will be like. For example, they may not leave home when they’re 18 or they may be wheelchair bound for life. Children with Spina Bifida also have some mental learning disorders so anything with numbers is difficult for them to remember.
“You have to understand that he might not progress the same as kids in his class,” Chuck said. “Whatever their struggles are, it will bring you joy to see them make improvements from year to year.”
When Ryann took Jaden into her home, she knew nothing about Spina Bifida. “I wasn’t scared to take on a child like him because I just told myself that I could do it,” Ryann said. Jaden has brought so much joy to her life and she would do it again if she had to.