Weird, isn't it?

So. Our neurosurgeon appointment for BBB kept getting rescheduled. They'd call, pushing our less urgent visit off for a few more weeks, because he'd been called away for emergency surgery. It happened more than a few times too. And we were pleased.

We were less urgent. Now that is exciting.

Weird, isn't it, when you've got some MRI results about lesion bleeding you want to talk about and it's labeled less urgent. And you feel good about that. Really good.

But that's just how it rolls, this disorder. Eh?

Because, you know, being on the other side, the emergency side, is horrific. No one wants to be there. A lot of us have. So yeah, cool, reschedule your hearts away. I just hope whoever was the reason behind this scheduling is okay. I really, really do.

The news was all right, too, when we did get in. Hopeful even. So, we'll take that too. Gladly.

AHAHAHAHAHA!!!!

Dear Bob and BBB,

I know you find your parents mortifying. And it's okay. But always remember...it could be worse.

Love,

Your Mom and Dad



*Big thank you's and xoxox to Ethel for sharing this.

Yawn...

So, that's it.

As of yesterday, we are now moved in. The last box has been dragged over. The floors were mopped. The keys turned over.

Our internet is working too. Let me digress to say this is huge as it wasn't. And it was supposed to be and it drove me to distraction because it's sort of hard to blog  and email and have a life any more WITHOUT WORKING INTERNET, DAMN YOU, COMCAST.

Ahem.

But anyway, we're here. We're in, we have the interwebs, we all survived, and I celebrated this morning with a donut and a huge cup of coffee in my new home. That of course is still missing some flooring and only has partially installed appliances and the downstairs toilet runs hot water only which is rather disconcerting. But it's fine. It's ours now.

Of course the respite is brief. BBB seems to be having problems again. The headaches, the seizures, the hearing loss, the vision blurring, all back again. MRI is scheduled for Sat. EEG for the Friday after. We wait, breath held, hoping the bleeding stops and recedes, taking the issues they cause with it as it always has before. We refuse to think it won't.

Because it will.

It will.

Meanwhile, I hope you all celebrated Rare Disease Day

and voted (for PattiG, not that we're trying to sway your vote or anything, but really you should have voted for her) in the 2011 Neuro Film Fest.


Yes???

The Fishy Smell of Success

In the sizzling August heat, the backseat of our SUV smelled like something that had refused to bathe for several weeks had crawled in and taken up residence, and then upped and died. Turns out the source was Bob's Big Brother, who we’d just picked up from camp. 

“Tell me that’s not you that smells,” I asked.

"Nah. Not me," BBB said. "It’s the fish.”

I spun in my seat and Hubby hit the brakes. 

“What fish? You brought home a fish?” I squealed. Because yes, BBB is the kind of kid who'd take home a fish and forget to tell us. 

BBB frowned. “No. I caught him, but then he got loose. He fell into my sneaker and it took a while to get him out.”

“You took him out of your shoe, right?” Hubby asked.  "And then you set him free, right?"

“Back in the lake, right?” I asked.

My son waved off our questions. “Relax. I didn’t bring any fish home.” That’s when he reached over for his backpack and started to unzip it. “I brought the bait home.”

I turned to Hubby, who was frantically scrabbling with the window buttons. (Now that we weren’t moving, well, the smell was something.)

"Do something," I said.

"Like what?" he said.

“Maybe it would be best if we find a gas station,” I said, holding my nose. “You know, to buy an air freshener?” I looked over my shoulder at BBB. “We can dangle it from his ear or something until we get home. It might help.”

We ended up not stopping (and possibly breaking a few speed limits because of this.) It turned out the bait was actually rubber worms– big, sparkly, purple and neon green worms, which he delightedly wiggled over the front seat at me. He also brought home his target practice shots, a leather wallet, and a tiny canoe he’d carved by hand. While I’d never quite experienced him smelling so badly before, I’d also never seen him so happy or proud as I did at that moment.

We drove the hour and a half home with the windows rolled down. Breathing through our mouths. It was worth it. BBB’d spent his first week away at sleep-away camp. Sure, it was a special camp, for kids like him with special needs. But it was something we’d never thought he’d be able to do. Ever. 

What happened, what I never foresaw, is that he’d come home smelling like a fish. Or more, a rank fish. Because I didn’t know he could successfully fish. Or that he could shoot target practice or paddle a canoe. I never imagined he’d share he met a really cute girl named Heather. And I certainly never dreamed he’d come home so exhausted he’d sleep through the night for the first time in years. 

But sometimes life surprises us like that; it’s wonderful when it does.

That night, after a thorough showering, the heaving of his duffel bag and sneakers into the trash, and an airing-out of the car, Hubby and I tucked him into bed. 

“So,” I said. “You haven’t told us. What was the worst part of your week at camp?"

BBB lay in bed, his fingers folded against his chest, and frowned at the ceiling. “It would have to be the green beans." He sighed. “They were just disgusting.”

Point taken. Then I asked him then what the best part was.

His face broke out in a grin, and he sat up, excited. 

“For once,” he said, “I got to do stuff normal kids get to do.”

He was right. He did. 

Why do I bring this up, you ask? No reason, other than this year's camp survey and next year's application just arrived in the mail today. My initial reaction was oh, no, cha-ching. Especially as cha-ching is scarce round here thanks to the most recent medical bills. AACK. I might have even had a little meltdown. But then Hubby reminded me about the fish. And, well, okay.  What can you do? 


Hopefully, he'll have an even better time next year.

Turn It Off

BBB just got a new cell phone. With an unlimited text plan. I was ambivalent; technology is difficult for him. Oh hell, just remembering his phone number is impossible for him. Friends, as in friends who would call, are sometimes too hard to maintain when you're socially challenged. But he coveted one, desperately. He wanted to be like other kids. Cool kids. Kids without a disability. So I caved.


He likes using it. A lot. Maybe a little too much, you know? Bob, too. We're all sitting in the same house and no one talks. All you hear is click-click-click. Yet, the concerns foremost on their minds haven't changed in the least. 

Example A:

Bob's Big Brother: What r you do n 2day?

Me: Plotting to take over the world.

Bob's Big Brother: Hw it going?

Me: Not bad. Almost finished, actually.

Bob's Big Brother: So what's for dinner

Me: The souls of my enemies.

Bob's Big Brother: Does tht mean no dssert?


Example B:

Bob: Make BBB stop txtn me.

Me: Can't. Too busy plotting world domination.

Bob: U did tht ystrdy.

Me: No. That was merely the continent.

Bob: Make him stp.

Me: You stop first.

Bob: Whts 4 din r?

Things have changed, and yet they haven't changed. Not where it matters. Remember how people used to say technology would make our lives easier? Better? Yeah. Well. Still waiting. . .


Is BBB cooler? If you ask his brother, he'd say not so much. (The feeling is mutual.) Happier, sure. But cooler? Still debating. . .


I remain ambivalent. About cells and teens and coolness, and just the fact that my boys are growing up too fast.  Yes. Very. 

Angiomas Suck...#1

The Manimal Challenge on Travel Channel's Man Vs. Food

Angiomas suck:

Whether it's a result of brain damage from his lesions bleeding, surgeries, or just for some unknown reason, BBB is unable to really tell when and if he's hungry or full. It's a ginormous problem in that he'll eat and eat and EAT, sometimes until he's physically sick. (Have I got a story for you about a breakfast buffet, my new denim jacket, and a rental car during one trip out to Houston, TX...) He also feels achingly hungry all the time. This leads to him overeating and even his resorting to stealing food. Considering we have to watch his weight in order to ensure his medications' effectiveness (and our food bills--hello), this can prove challenging for all of us. As in sucktastically challenging.

But Life's Good Anyway:

Who knows. Up his exercise regime and the kid just might have himself one kickass career as a professional eater.

Right now he's focused on tackling the Manimal Challenge in Arundel, ME that he saw last night on Travel Channel's Man Vs. Food. (Need I add it's his favorite food show??? And that even though he's only eighteen, the boy could totally eat Adam under the table already?)  The Tradewinds Cafe is less than an hour away from us, and he's hellbent on heading up there next summer. Never mind the fame and glory such an accomplishment would surely bring, there's a free Manimal t-shirt in it for him...now that's pretty good.

Link courtesy of Ibetyouwont.com