I’ve writtten and deleted this post a bazillion times in my head. I wanted to pull out all the stops and let you in, really let you in, to show you why Purple Day and this entire conversation is so important to me.
But I wanted you to see, really see, what seizures look like. I wanted you to see that they’re strange, and scary, and dangerous, but sometimes easy to miss. If you only know about seizures from TV and movies, like I did, you’ve only see tonic clonic (grand mal) seizures. It would be perfectly reasonable to assume that’s the only kind there is.
Unfortunately, that’s not true. There are many different kinds of seizures and different types of Epilepsy Syndromes. Aidan has Lennox-Gastaux Syndrome and experiences myoclonic, tonic, and absence seizures.
I recently posted a video of Aidan using his talker and referenced the small seizure on there. Several seizure moms asked me to point it out. Granted, only a slight tremor in his hand was visible. But this, and other conversations I’ve had recently, have propelled me to consider posting video of Aidan’s seizures.
It was a video that led me to a neurologist, this video, in which Danielle, the mom, says, “I don’t think it’s a seizure.” Not only did that sweet boy go on to literally have half of his brain removed to treat his Epilepsy, but he’s also an exceptional boy who loves his siblings and speaks and walks and plays at the beach and does all kinds of little boy things. That video alerted me and changed my parenting course and I’m incredibly grateful.
That’s why I wanted to post video of Aidan, in case anyone else needed to see, needed a push to the neurologists office.
But I couldn’t do it. I can’t do it. I suppose I could say it’s to protect Aidan’s privacy and a bit of his dignity, but in truth, that’s not it. There’s something about Aidan not being there during his seizures. It’s not him. It’s also disturbing, perhaps not to you, but to me. I suppose it shouldn’t be because I see them all the live long day, but it is. I work hard on this blog for you to know Aidan, to be comfortable with him in your world, to see the good and the bad in our life. But his seizures are something else entirely.
While I won’t put video out into all of cyberspace, I will make this offer. If there are any parents out there who just aren’t sure, who really want to know what I’m talking about, email me. I do feel comfortable sending video to those who need it. If there are any medical professionals who want to be prepared and have only been schooled in tonic clonics, I’d also be happy to share video with you. It’s what I feel capable of in helping others.
There’s no clean way to wrap up this post because there’s no way to make seizures cut and dried. So I’ll leave you with my little bruiser. I know the black eye is a bummer, curtesy of a seizure, but that face….