While pregnant with her first child, Shelley Fontenot experienced what any mother would describe as a normal pregnancy. But 24 hours before she was set to deliver her baby girl, Carol, things changed.
“Carol was born with the umbilical cord wrapped around her neck, causing a hypoxic brain injury,” she shares. Carol was later diagnosed with cerebral palsy and now has a trach. The diagnosis was a shock to the family, but despite the obstacles the family has faced over the years, they have grown stronger and closer.
“When I first saw her, she was blue, and the doctors were resuscitating her. But, we have learned so much from all of this. She’s our baby. Carol has brought our family closer. Our faith in God has grown stronger. She’s such a blessing,” she says. Carol has come a long way from that first day in the hospital. Though unable to speak and confined to her wheelchair, through therapy she has discovered a way to communicate and be more involved in family activities.
Now seven years old, Carol attends therapy twice a week at McMains Children’s Developmental Center. There, she works with an occupational therapist, a speech therapist, and a physical therapist. Sometimes her other classmates who also attend therapy are able to come together for a group setting where McMains can work with all of them. This is especially helpful, Shelley notes, because each child is encouraging the other to do more and work harder. “Carol really enjoys going to therapy, but like any child, she has her good days and her bad days,” she explains.
McMains plays a crucial role in the Fontenots’ lives, one that Shelley is incredibly thankful for. “From Lonnie at the window to Angie in the waiting room who makes you feel at home, everyone is there to lift you up and encourage you when you’re having a rough day. It’s amazing,” she says. The nurturing staff and McMains’ Me Too Program has helped the family overcome some of the obstacles that Carol faces each day.
Created by Kim Haynes, McMains’ Clinical and Operations Director, the Me Too program provides assistive equipment to families so that children with multiple disabilities can participate in everyday activities, such as helping around the house and playing games. The program takes place in McMains’ Inclusion House, a small one-room building that is set up to look like a home. During the six-week program, the Fontenots learned how to use the assistive technology provided by McMains to help Carol with turning on blenders and mixers and even connecting to games for family game night. And, Carol is able to do all of this by the turn of her head.
Shelley explains, “Since Carol is nonverbal, it’s hard for her to speak. We used the program to help her get involved with everyday tasks. With the adaptive technology, we are able to have family nights, and she is able to plug in and turn on the hand mixer to make cookies or the blender to make milkshakes. She’s doing chores around the house now. It has made her feel more included.”
Although Carol has been presented with several challenges, she remains a happy-go-lucky child. “She’s a lot like my mom was. She will let you know if she doesn’t like something. She’s a genuinely happy child, and she’s very strong willed and independent,” Shelley shares. Together, the family enjoys going camping, going out to eat and to the library, and attending church.
While the Fontenots continue to work with McMains and find new ways to come together as more of a unit, Shelley encourages all families who may be going through similar situations to never give up. “Keep strong in your faith. What does bring you down, God will bring you up. Just remember that you made it this far, you will make it through the rest,” she says. ■