As moms and caregivers, so much of our day revolves around planning, preparing, anticipating, and staying one step ahead. We manage medications, meals, appointments, school schedules, therapies, personal care, routines, and countless other details that help our children have the best day possible. When you are parenting a child with epilepsy, special needs, and complex medical needs, that responsibility can feel even greater. And after years of doing it, sometimes we can forget something really important: We are not actually in control of everything. No matter how carefully we plan, something unexpected can happen that completely changes the plan—and when it does, it can bring up frustration, stress, anxiety, anger, sadness, or even fear. In this episode, I share a very real example from our summer when our daughter spent eight weeks on the ketogenic diet as we hoped it would help with her seizures. Things started out well, but toward the end of the diet, she suddenly stopped wanting to eat. What started as a few unfinished meals eventually turned into her barely eating at all. With a family vacation approaching, I found myself asking so many questions: Why isn’t she eating? Is something seriously wrong? Should we cancel our vacation? What am I supposed to do? I had plans. I had prepared. I was communicating with her medical team. I was doing everything I knew to do—and yet I still didn’t have the answer. Eventually, after continuing to advocate for her and reaching out to other parents who had been through similar experiences, we discovered that acid reflux could be contributing to what we were seeing. After discussing it with her doctor and beginning treatment, we started seeing gradual improvements in her eating. This experience reminded me of something I think so many special needs and epilepsy parents need to hear: We don’t have to have all of the answers. Sometimes we have to trust our instincts, keep asking questions, communicate with our child’s care team, and lean on other parents who truly understand what we’re going through. Because just when we think we have everything figured out, our children can throw us a curveball. And that’s okay. We aren’t failing when we don’t have the answer immediately. We’re human. Most importantly, none of us should have to walk this journey alone. A reminder for the special needs and medical moms out there.. If you’re in a season where you feel like you’re constantly trying to solve the next problem, anticipate the next seizure, prepare for the next appointment, or figure out the next treatment, I hope this episode reminds you that you don’t have to know exactly what comes next. Keep asking questions. Trust your instincts. Stay connected to your child’s care team. Lean on parents who understand. And give yourself grace when the plan changes. You are doing more than you realize. And you are not alone. If this episode resonated with you, please share it with another parent who may need to hear this reminder today. Don’t forget to rate and review the podcast—it means so much to me and helps this show reach more parents who need to know they aren’t alone. Connect With Me Follow Erica on Instagram @parentingepilepsy_specialneeds and join a community of parents navigating the ups and downs of epilepsy, special needs parenting, caregiving, and raising medically complex children. If this episode resonated with you, share it with another parent who might need a reminder that they aren’t alone. Thank you for being here, and I’ll see you on the next episode. #specialneedsparenting #epilepsy #parentingepilepsychildren #hemispherectomy #hemiparesis
