|Never a fair-weather fan|
Even though I woke up this morning to the sound of Sophie having a really big seizure, I am encouraged by the last few days. She has had markedly fewer seizures and looks brighter. I guess the brighter part is subjective, and I could possibly be wishing it so, but I've been doing this thing for nearly two decades, so I'm going to go with definitely brighter. Isn't there a whole school of people who choose to be happy? She's brighter. She's having less seizures. There. I typed that in regular font. I feel slightly less frenzied but thoroughly weird. Anxious. I learned at the conference last weekend that about 15% of those who try CBD fail, particularly those who are on other medications or high doses of medications. These kids do better as the medicines are weaned, particularly the benzos (Onfi is a benzo). If any of you have ever weaned a benzo from an epileptic child (or yourself, actually), it's horrific. I've literally weaned Sophie from various benzos over periods of months and even years. I'm reminded that there's still Charlotte's Web to try, if this particular tincture doesn't do the trick. However, I'm also feeling afraid. The reason for that is all the rumbling on the pediatric cannabis Facebook page about Big Government and Big Pharm -- how they could possibly get their hands on the stuff and make this whole thing a big, giant clusterfuck. I admonish myself not to be a conspiracy theorist, and then I think about our experience with anti-epileptic drugs -- getting them, paying for them -- the whole Onfi clusterfuck (twice, now, I've used that perfect word!!!) that I wrote about ad nauseum on this here blog.
One day at a time. Choose to be happy. Wean slowly, far more slowly than the Powers That Be tell you.
My head is down, figuratively and literally. I blew-dry (or is it blow-dried) my hair this morning, a rare, if not singular, occurrence. I did it like I used to do when I was young. I hang my head upside down and just let that hot air go. This is all part of my transition into cronedom, believe it or not. I'm going to be the crone with great hair. Also, Oliver is taking a mental health day from school which means my mental health is somewhat in question. Henry, god bless him, is at school, excited that tomorrow is Halloween. He is planning on wearing a banana costume to school, a costume that cost $12.99 on Amazon. Thank god for easy kids with uncreative mothers. Oh, and Sophie is home because we have an appointment to see The Adult Neurologist. Now that she's eighteen, we must make that transition to Adult Neurology.