OMG, my son is a SENIOR IN HIGH SCHOOL.
How did we get here? Well, we stumbled our way through a nightmare, and woke up and now we're here. Time, the one constant, just keeps moving along, one way or another and the journey continues.
We missed alot of the good stuff, in the last 1/2 of his life, that's for sure. The lazy, easy going weekends doing nothing special, the giggles, the family road trips, the Grand Canyon....these were not our journey.
Romantic moments, supportive loving marriage - not my journey.
Down and dirty, carefree childhood with long unfolding summers, meaningless bumps on the head and simple pleasures - not Lance's journey.
But somehow, we got here anyway.
My baby is a senior.
He's big. He drives. He has muscles. And friends.
He's the captain of the Varsity boys basketball team.
He's consumed with getting into college, like any other forward thinking senior might be.
He swallows approximately 25 pills on an average day.
He goes to an average of 6 medical appointments every month - not including normal things like, the dentist. (Oh, did I mention that none of them are covered by insurance? What a surprise...)
And he has had the most PANDAS symptom-free 4-5 month stretch we have seen since before July 7, 2006. We are 10 months post his second IVIG treatment.
I talked with my sister on the phone Saturday morning and she said, what's up? Bracing herself, knowing that Lance had been home sick half the week with some throat and respiratory infection and that the chances of it instigating a major tic flare are big. We were both surprised when I said, Nothing. Lance was fine. No flare. Of course, we added a second antibiotic and a number of Chinese herbs, swelling his total number of daily swallowed pills to something like 40. But no flare. And she said what are you doing this weekend and I said, Nothing.
HA!!!! NOTHING!!!
Oh, there is plenty to do and plenty I've done, cleaning, laundry, exercising, shopping, cooking, working on labs from home, doing the school carpool schedule. But that's it. Just normal stuff like most other American families. So Lance and I spent this lovely rainy Sunday afternoon laying on the sofa and watching the 2-hour Grey's Anatomy season premier on demand, and now he's doing some random thing. Because there is no flare and thus, Nothing pressing.
I do not take Nothing for granted. It fascinates me.
Nothing for me includes the absolute awareness that he is NOT sick at this moment, and I am not currently actively freaking out, paralyzed, terrified, crushed or frantic with worry. I'm not - at this one moment - circuitously consumed with how I'm going to heal my child, how I'm going to pay for it, and of what PANDAS is doing to his brain.
He is NOT sick. There is No flare, he's ok. This is Good. Hmmmmm.
Oh, its not like I think ok, he's better now, his PANDAS is cured, let's get on with the show. Not like, my guard is down. Its not like I believe this one glorious moment of respite will last. Although, I guess it could. It could, in fact, look just like this tomorrow. Or next week. Like Nothing.
I must admit I am constantly thinking about PANDAS, about PANDAS kids, about brains, inflammation, neurotransmitters and the blood brain barrier. I'm obsessed with leaky guts, and gluten antibodies, and autoantibodies, and lab tests, and glutamate, and the genetic patterns I'm seeing in PANDAS kids' 23andme findings. I think about loneliness, and I think about money alot. And I wonder if I'm ever going to find love again in my life, or trust the Universe, and just be happy. And I'm always, always wondering about if I'm ever going to be able to figure this out, this PANS/PANDAS thing.
But anyway, the main thing is, for this moment, that Lance and I are home on a rainy Sunday, and we are doing nothing. And I'm glad, and sleepy and grateful, for this simple moment.
Love to all my sisters and brothers out there. I wish you many simple moments.
amy
