What Life Was Really Like After Our Daughter’s Hemispherectomy: The First 7 Weeks

When I think back to the days and months following our daughter’s right hemispherectomy surgery, I want to give that woman, her husband and her kids HUGE hugs, because they did it. They survived what might have been the hardest period of their lives.But when you are in it, at least from my perspective as a mom, you don’t necessarily see it that way. You are focused on living minute by minute and day by day, simply trying to survive and get to the other side.You look for the wins. You celebrate every basic milestone. You pray through the challenging moments and keep moving forward.In this very vulnerable episode, I’m taking you back to our daughter’s hemispherectomy recovery in 2018 and sharing what those first seven weeks were really like.We knew she would be in the hospital for roughly one to two weeks after surgery because she would have a drain. After that, she would transfer to a local inpatient rehabilitation hospital, where she would spend another five to six weeks receiving intensive therapy.I stayed inpatient with her throughout that time. Being away from my husband and our other two daughters was incredibly difficult, but we knew how important this recovery period was going to be.There is so much that parents think about when considering a surgery as significant as a hemispherectomy. You think about the potential benefits, the risks, the recovery, and how this decision could change your child’s life and your entire family.Many parents seek multiple opinions and talk with other families before making this decision. We did, too.  And one thing I want to emphasize throughout this episode is that every child is different.Doctors can explain the medical facts, potential risks and possible outcomes based on your child’s condition, epilepsy and what they have seen with other patients. But there are so many parts of the day-to-day experience that they simply cannot predict.They aren’t living with your child day in and day out. They don’t see every little victory, every difficult moment or every unexpected challenge.  That’s where hearing from other parents can be so valuable.So, take a deep breath with me, because we’re going back. If you are a parent preparing for a hemispherectomy, recovering from one, or simply trying to understand what this journey can look like, I hope our experience reminds you that you are not alone.Please share this episode with another parent who may benefit from hearing it.And don’t forget to rate and review the podcast. It means the world to me and helps this show reach other parents who need this information and support.You can connect with me on Instagram at @parentingepilepsy_specialneeds and become part of a community that understands the ups and downs of parenting a child with epilepsy and special needs.If this episode spoke to your heart, 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