My son: "Mommy, if Daddy were married to a man, I'd be able to have a lizard for a pet."
Oh, the stereotypes.
Me: "Only if his husband was ok with reptiles."
I am so not.
He wants something to make him feel good, something that will sit in the corner of his heart (his words) and something that will kinda be like a reward for all his efforts at getting better.
My little guy is flaring--big time. Doesn't see the point of living if living means needles and needles and pills upon pills and no recovery. Can't say I blame him. But two weeks ago, he was doing ok, and he will be ok once again. I just can't say when.
I spoke with one of our doctors today and will meet with her tomorrow. We see Dr. Jones for a follow-up next week and "we" are scheduled for IVIG the week after. Lots of medical time. Lots of medical bills.
And therein is the point of more stress now. 1. Major flare. 2. Money. and 3. IVIG controversy.
A problem has cropped up over the type of plasma being used for the IVIG. The doctor who offers this service has changed from using Gammagard to Octagam. Many PANDAS parents are expressing major upset over the quality of it. I need to further pursue this. The entire procedure is experimental enough. Do we dare try a different and once-recalled product? (Note: it was a voluntary recall.)
Then, there's my little guy who has become another person. There are tantrums, urges to run-away or to immediately and permanently relocate to Florida, nightmares and sleepwalking. I won't go into the details, but it's misery x 1,000,000.
We are not isolated, though.
Friday morning, I emailed my daughter's teacher and school social worker, both caring and trustworthy people. I know my daughter is in a good place when she is at school.
Saturday, I took a long, sweat-inducing walk with a great friend and my trusty dog. Finished reading yet another book. And felt the love from my online PANDAS parents support "family."
Today, I cleaned my kitchen floor until it's shining bright like a diamond. And one extraordinary teacher/friend offered to come visit with my son a couple of times and teach him whatever he would like to learn (and give us a little respite.)
When I was in my very early 30s, I took a trip to Italy alone. For ten days. Every day, I met someone new--another American woman, a family who "adopted" me for the day, a group of people from Kenya with whom I saw a concert in Venice, a handsome Italian man who courteously walked me to my next location in the evening. And it occurred to me, although I'm not really religious, that there was some positive thread, that somehow, if I looked, I'd find that something was looking after me. I wasn't alone.
And it's that way now. I've had emails and phone calls, and prayers. We will get through this. I know it.
So, here's the weird thing. When I'm stressed, really stressed, my body asks me for chocolate. And usually, I say, "No!" Because if I said, "yes," I'd weight 400 pounds.
But when I'm in super-stressed mode, my body doesn't want to eat. Ahhh. Isn't that the kicker? Why can't I always feel like food is just a necessity?
And, to top if off, I want to clean. Not your house, sorry. But I want to scrub my kitchen down. I want to try to get those old, perhaps 90-year old kitchen tiles to gleam like the teeth of a freshly dentist-ed 90 year old man.
Just call me Cinderella. Hungry and scrubbing.
My Prince Charming is out grocery shopping now. And not for chocolate. In fact, my Prince is a little apprehensive about the dietary changes we will have to make after this meeting tomorrow (very possibly dairy-free and gluten-free and peanut-free. Basically my little's guy's staples.)
Yeah, I'm taking off yet another afternoon from work, while worrying about paying for the $100s of dollars of supplements that are not covered by insurance. The little guy is quiet right now, but that's not necessarily good news. My daughter is relaxing her soccer-muscles in a bath and singing happily to herself that she's got the moves like Jagger.
Life, for this moment, is OK.
And when the stress hits again? Well, the stovetop is looking a little grubby.