Tell me your experience with febrile seizures
About 3 weeks ago, Harper, my three-year-old had a febrile seizure and if I am being honest I am still processing it. ‘It is common, they are mostly harmless, there is no side effect’, are the things I have to repeat to myself when I think about it. Things I was told when I took her to the ER and what her doctor’s office told me when followed up with them. I tell myself I am overreacting to be so concerned and I need to calm down. As I tell myself to calm down, I can literally feel my back muscles spring up and tighten still.
Harper was born with vascular malformations. When she was born she looked like her lower half was dipped in fire. She has port-wine stains on both her legs and feet, her lower stomach, and up her back. Her right leg and foot are longer and larger than her right. When she was born the nurses and doctors ignored my questions and simply stated ‘she is fine’. I began to think maybe I was overacting.
There is a pattern I have with not my allowing myself to feel, to be concerned, and trusting the emotions I genuinely have at that moment. I don’t like talking about Harper's vascular malformations because I feel like it isn't my story. It's not my congenital condition it’s hers. She should have the opportunity to share her story in the way she chooses to share her story when she wants her story told. I am here to just hold her hand through it all. And I still agree with all of that but I know there is a story that I have too as her mother, as someone that loves her deeply standing on the sidelines, and advocating for her when she doesn't have a voice.
If I am being completely honest in that moment of her febrile seizure I was terrified, many hours, and days after. I wasn't sure if I should take a shower, go to the next room, or even turn my head from her. Her temperature continued to spike for another 24 hours. I was scared if I would miss a seizure and she could fall and hurt herself or choke. It’s a fear I have never had before and a fear I hate having. There is so much of me that feels like it’s wrong to have the fear and concerns that I have and there is part of me that feels like it’s ok to feel this way and my emotions are normal and allow them to happen.
If I am being honest I want to talk to other parents that have experienced the same thing until I am blue in the face about febrile seizures. Probably in hopes that if I word vomit enough about it the fear won’t be so big.
Every one of my girls I have always felt as though were placed in my life right when I needed them when I didn’t know I needed them. Coming into my life they taught me some hard lessons but each lesson has been absolutely pivotal in who I am today. I feel in debt to all they have poured into me I have to properly reciprocate the same to them.
My definition of a parent before Harper was born was to be able to prepare your kids for what you know is to come pouring into them all that I know to be better than my yesterday. Harper’s vascular malformation is a congenital condition which means it was presented at birth. I could not have known prior to birth. I had never met anyone with vascular malformations before meeting my Harper and I felt so lost and broken feeling as though I could never help her. I learned day by day to just take every moment as they are what is to come will come what is right now is absolutely beautiful. With her febrile seizure, I had never knowingly met a child that had febrile seizures until I met my Harper. I don’t know what will come 20 years from now for her but right now in these moments of my story, I have learned it’s ok to feel every emotion I feel because I am alive and that’s the most beautiful part.
Sorry if this post was confusing and highly emotional. I have honestly been sitting on it for about 3 weeks know kind of afraid to share it. It's out there now though and I am glad to have to share it. If any parent can share their knowledge or experiences of febrile seizures PLEASE share in the comments, please! I don’t think I would be the only person to benefit from your sharing.