Hi, everyone – I’m working on a post but it’s still not where I want it to be, so today you get this, plus the announcement of the winners of last week’s draw.
My teenage son has been tentatively diagnosed with a rare genetic disorder that leaves him temporarily paralyzed, among other things. The first episode, in April, was terrifying because we had no idea what was happening, and I actually thought he might die right there in the ICU before they figured it out. The second time, a couple of weeks ago, was terrifying because despite some knowledge and best efforts, here we were again in the ER. It’s a disorder wherein the potassium gets trapped in his cells where it’s stored rather than in his bloodstream where it’s needed, so all the muscles weaken suddenly (technically, an ion channelopathy). The paralysis isn’t even the scariest part; the heart’s a muscle too, and his slows down to dangerous levels during an attack.
It’s surreal, dealing with something so rare nobody at our renowned children’s hospital had ever seen a case. I wound up with a letter from their medical experts so when we roll up to the ER with my kid in crisis the doctors don’t waste precious time deciding whether I’m a nutjob or a fraud. No, a diet rich in potassium doesn’t solve it, because the problem isn’t a lack of potassium there. And there’s no home treatment. When it happens he’s off in an ambulance to the ICU, getting massive IV infusions of potassium and supportive care while they work to keep his heart going. Then –bam— after a day or two, the cellular floodgates open and it all reverses and in 45 minutes he’s totally fine, just a goofy 17-year old again.
I’m good in a crisis, but come on. It’s not like that kid hasn’t been through enough drama in his short life. I did some glaring at the heavens and shaking my fist. Why am I telling you this? I don’t even know, really, except that’s what’s been going on and I’m angry about it, it’s just so freaking unfair to him. And me, how am I coping? Partly by giving stuff away, like this. It’s a larger connectedness to the world and other people which I find reassuring. I can’t explain it any better than that.
Using the magic powers of random.org for the drawing:
Winner of the tiny bottles is Teresa
Winner of the Jolie Madame is Mals86
Winners of the lippies (I broke them into two sets, there’s a lot) are Eldarwen22 and Gina Tabasso
Congrats, and email me your address at perfume diva at g mail dot com