When one writes a blog, one must expect to reveal a certain amount of personal information in it, especially when one is writing a blog that is, at least partly, about parenting. I have had no trouble at all writing plenty of embarrassing stories about myself and my children. I try not to embarrass my wife too much, but the children are fair game in my mind, because, you know, they’re kids! They do funny kid things! When they are older, I hope they will look back on this and laugh, and that they will be able to see that I’m not specifically trying to humiliate them, but rather to find the humor in the silly things that all people do. But there is one subject I have avoided rather conspicuously in this blog.
Ruby was diagnosed with epilepsy in the early spring. I first started noticing the seizures in February, and at this point they are (we think) totally under control. But I have not mentioned this publicly. We have told family members and close friends, but for some reason this seemed almost too personal to share with the world.
And I have wanted to write about it. The brain scans at the hospital, the interviews with pre-schools in which we tried to get her in under their “medical condition” clause, the trial and error with the medicine doses, the stacks of unpaid medical bills, and the overall fear, terror, and vulnerability that come with having your “perfect” family life shattered by something like this.
I don’t know why, but even though I felt comfortable telling you the crazy things Ruby says in church, how she mispronounces things, and posted pictures of a birthday cake falling on her, I still felt like revealing something like this to the world would be a breach of her privacy. I spoke to my wife about this, and she suggested I ask Ruby if it would be okay to write about it. To me this seemed like a bit of a cop-out, since 16 year old Ruby might have different views than 4 year old Ruby on this matter, but it did seem like the only thing to do. So I asked her.
I should not have been at all surprised that she said it was fine, because she tells everyone she meets about it. She is not shy. About anything, really. She doesn’t say “epilepsy,” because she doesn’t know the word, but she tells people that “her ears turn off” (her term for the short seizures that she is/was subject to), and she will be happy to tell you about her “brain medicine” if you ask her. Social stigmas are, thankfully, not yet a part of her young world.
So I am now giving myself permission to write about this. I have almost let something slip about it in other posts (it’s hard to keep it out when it affects almost every part of your life in some way), but thought it might be odd and jarring to just drop in a mention of her epilepsy medicine with no prior warning, so it seemed like a coming out post was needed. This is that post. I may reference this in the future, and I may not, but if I am, as one of my friends and readers said once, writing my autobiography here, I need to include the bad along with the hilariously ridiculous.
Love to all of you…