Hi friends, family, and fellow fighters- I want to start by saying, I am sorry in advance- but this post is not going to be my usual happy/grateful/positive post. Today has been a really hard one, and God has put it very heavy on my heart to share my thoughts. I don’t know why, maybe this will help another mama not feel so alone, but I’m just going to type this. Please don’t feel obligated to read if you aren’t in the headspace to do so. The past few weeks have been really hard. I don’t know if Nova’s myoclonus is truly worse than usual, or if it’s been going on so long with no solution that it’s finally getting deep under my skin. Almost every single day she shakes so bad for an hour in the morning and an hour at night that she has to just sit on the couch with us holding her. It also happens throughout the day, but these two hours is when she is truly unable to function. She has gotten some relief with the photosensitivity glasses and has occasionally been able to go outside, but its still maybe once every other week. Denver still (knock on wood) has not had a tonic clonic seizure, but she also is having her nonconvulsive seizure activity throughout the day. It’s every single day for these kids. Every single day I have to pray to God-multiple times! – that these little seizures don’t turn into something worse. Today they did. Again. Nova has had more seizures in the last 3 months than she had had for almost a year prior. This one was bad. Her eyes rolled back, her lips turned blue, and she was making that dreaded seizure cry. It was horrible, it was scary and to be blunt- I just don’t understand why. I don’t understand why my kids. Why any kids? What have these innocent little babies done to deserve this? She was completely passed out afterwards. I couldn’t even tell her how brave she is and how much I love her. Another added layer is our genetics. The girl’s genetic mutation is inherited from me. Our specific variant’s most common outcome is Dravet Syndrome. Why do my daughters have this and I didn’t? Why have I only had 3 seizures in my childhood and Nova is having 3 a week? Why do they have to suffer this? I would take it from them in a heartbeat if I could. And BOTH of my daughters? We were so focused on Nova seizing I didn’t even realize Denver was having head drops until I got Nova stable and took Denver to my parents’ house. I can’t put into words how heavy the grief I carry every day is. I haven’t slept through the night in two and a half years. I hate this so much. I want a fucking cure. I want answers. I spend every day in fear of Dravet winning and it is so hard. Tomorrow isn’t promised for anyone, but this is just terrifying. Not only is proper medical care a battle for them, but there is no mental health care for caregivers unless you have private insurance. Medicaid doesn’t care the battle that you’re fighting in your head every day, and as far as I am aware, there are no other free resources for caregivers to seek therapy. So we just bottle it up, and everyone expects you to act the same you were before your child’s diagnosis. Everyone expects you to act like them. To function like a “normal” human. How can I do that when my whole world could end any second? Fuck Dravet. Fuck Dravet. Fuck Dravet. Please- if you don’t want to donate to our family directly, please donate to the Dravet Syndrome Foundation. Please pray to God for a cure. Please share any posts you see about Dravet. Please. These kids deserve the best lives possible- not just mine, every kid affected by this.
-Addi Epilepsymama
