Time flies when you're having fun.
No rest for the wicked.
Shit happens.
So, we've been busy, and then this happened:
After two years of not personally witnessing any visible seizures, Brennan had a small seizure that was so different from the tonic clonic (aka grand mal) seizures that he used to have. He knew it was going to happen -- or at least he suspected it and was right. It was brief. His lips didn't turn blue. When it was over, it was over! It still sucked because it meant that he couldn't reduce one of his meds that he had been trying to reduce. It still sucked because it means Brennan still cannot drive (not enough warning to pull over safely). It still sucked because seizures suck.
Brennan had at least one more of this same kind of seizure, went back up on his meds, and now he's doing better again. The only seizures that sometimes show up recently are basically an aura -- the same feeling he had before the seizure in the video that just never moves beyond that feeling.
But that's not all that's going on. Brennan has been going to Phoenix College and working on Sundays (teaching at our synagogue Congregation Merkaz Ha-Iyr). And he's tried a few times to improve his bowling game.
The rest of us are also busy. Sophie is a sophomore in a Montessori program at a local high school. Abby is almost done with her Montessori school and will join Sophie in the fall. Alan works hard and always takes care of the rest of us (including buying two of everything). And I have been helping the Epilepsy Foundation of Arizona with some volunteer advocacy. I spoke at a Health Committee Hearing at the Arizona House of Representatives about a bill that would help doctors be able to prescribe cannabidiol (CBD) to patients with epilepsy if it is approved by the FDA. The bill passed through our State Senate, House Health Committee, and will have one more vote before going to the governor's office.
And....on Saturday I will be traveling to Washington D.C. with a young woman and her mother to participate in Teens Speak Up! This is the same program that Brennan and I went to D.C. for in 2010, only now they send teens. Our day of appointments will be 7 years and 2 days from the day Brennan and I were there. We were there while Congress was passing the Affordable Care Act. Today, as I'm finalizing a few more appointments, I'm waiting to hear if ACA will be repealed and replaced. I guess that everything happens for a reason. And whatever doesn't kill us, we'll get billed for, and hopefully we'll still have health insurance to help pay for it.
Last, but not least: Saturday is the Epilepsy Walk (AKA 5K for Epilepsy, but running or even walking isn't required). Please consider joining our team The Rabid Squirrel Squad or making a donation. It helps with programs like Teens Speak Up! and also the amazing wonderful Camp Candlelight.
Click HERE to join or donate.
