Reddit reviews Becky the Brave: A Story about Epilepsy

First, I would like to ask if you have gotten over the "it's not fair, she's never going to be normal" part? That's not accusatory, it's a serious question because a big part of what helped me start to accept the diagnosis at age 9 was the fact that my parents seemed to accept it and treat me as if nothing had changed (other than the medication and doctors visits). I remember distinctly leaving the hospital after my first EEG and crying because I thought I had this horrible disease but my dad calmly explained to me that I just had a quirk in my brain and that everyone has a quirk with something. This calmed me down and though I didn't accept everything right away it certainly put me on the path to acceptance.

Now, you might already be beyond the accepting part in which case you can tell your daughter that 2/3 of all kids with epilepsy grow out of it by their teens and that even if she doesn't, it sounds like her epilepsy is well controlled and she will be able to live a relatively normal happy life.

I looked for some books online and found these: What If They Knew, Julia, Mungo, and the Earthquake, and Becky the Brave. Books helped me as a child too so even if you can't find any that you think she would like about epilepsy go ahead and get books on any subject for her.

I'm not sure what conversations you've already had with her but make sure that she knows that all her feelings are completely normal - it sucks, it's not fair, and seizures can be scary but that you love her and will always be there if she would like to talk about it. Even if you've already expressed that or you think she knows, it's still a good thing to hear and can be a comfort in itself. Take care and good luck!

I forgot to mention one other thing - we wrote a letter and presented it to the class each year at school so the kids would know about our daughter's seizures. It was amazing to see the response from little kids - very supportive, and it helped them understand what was happening so they weren't afraid of the seizure. We also bought the book Becky the Brave which was read in class by the teacher.
I can post a copy of our letter if you're interested in seeing what we said in it.