Life With a Wheelchair: The Everyday Challenges of Parenting a Child With Epilepsy and Disabilities

There are so many things that nobody prepares you for when you become the parent of a child with a disability, complex medical needs, and mobility challenges.For our family, life changed significantly after our daughter underwent a hemispherectomy at just 4 years old. When we left inpatient rehabilitation with a wheelchair, we thought it would be temporary. However, life went a different direction than we originally anticipated and her wheelchair became her primary way of getting around.Over time, I had to learn how to adapt—not only to caring for a child who uses a wheelchair, but also to all of the everyday planning, problem-solving, advocacy, and adjustments that come with it.In this episode, I’m sharing some of the everyday things I never realized would become part of our lives as a family raising a child with epilepsy, disabilities, and complex medical needs.We’ll talk about:• Grocery shopping and planning ahead when you’re out with your child• Calling restaurants to make sure they can accommodate a wheelchair• Navigating birthday parties• Traveling• Finding accessible and family bathrooms in public places• Responding when children stare or ask questions about a wheelchair• Bathing, grooming, and caring for a child with physical disabilities as they grow older• The emotional side of realizing your teenager still needs help with everyday personal care• Making your home more accessible and purchasing equipment that makes everyday life easier One of the biggest things I’ve learned is that you don’t necessarily figure everything out all at once. You learn as you go.You adapt. You problem-solve. You find what works for your family. And sometimes, you simply take it one day at a time.There are moments when I grieve the things I imagined my daughter’s life would look like, especially when I think about the independence that many 13-year-olds have. But there are also so many beautiful moments—the smiles, laughs, hugs, accomplishments, and little victories—that remind me why we continue to do everything we do.If you are a special needs mom, epilepsy mom, medical mom, or caregiver who is navigating life with a child who uses a wheelchair, I hope this episode reminds you that you are not alone.You don’t have to have everything figured out.Take it day by day, use the resources available to you, lean on parents who have walked this road before you, and find what works for your child and your family.And most importantly, don’t forget to appreciate the little things that make your child uniquely them.If this episode resonated with you, please share it with another parent who may need to hear it. And if you have a moment, please rate and review the podcast—it means so much to me and helps this podcast reach more moms and caregivers who need support.Follow along on Instagram: @parentingepilepsy_specialneeds #specialneedsparenting #epilepsy #parentingepilepsychildren #hemispherectomy #hemiparesis