International Patient Registry

Go, go, GO!!!! The International Patient Registry for those with CCMs. Just bring me back some donuts. Thx.

Some like this would be great. Ohhhh, pretty.

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.

Let's Celebrate!

Happy Cavernous Angioma Awareness Day, Houston TX!

Shout-Out

Blogs (personal of any topic as well). Info. News, articles. Links. Past and present. Building a blog is haaaardddd work. So pass'em on. I'm needy. Please!!!!

Email me:
suckocity@live.com

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Got blog? Of any kind? Are you a Twit? Do you FB? Crosslink. Follow me. Suggest some friends. The more I link to, the more I crosslink to, the more I mention Angioma Alliance and other organizations working to research and help those with CCMs,  the easier it is for others looking for that info to find help.

It's all part of our evil plan for world domination. To conquer Cavernous Angiomas, that is. I swear. (But let's just say, were we ever to accomplish this, we firmly believe donuts to be the international official food of goodness. Just saying.)

Angioma Awareness Event!

Mayor Parker of Houston, TX has declared September 25th Cavernous Angioma Day!


Sa-Weet, Mayor. 


If that's your neck of the woods, celebrate by checking out the:
Angioma Awareness 5K Fun Run/Walk

Sabine-to-Bagby Promenade/Buffalo Bayou Walk
150 Sabine Street/Parking Lot H
Houston, TX

Saturday, September 25, 2010 from 9 am to 12 pm

Brought to you by Delia Candelaria and friends, this will not be your typical "walk in the park". We have recruited various sponsors and acquired generous donations to make the morning worth getting up so early! Reasons to come include door prizes, food/drinks, and lots of fun. Registration is $15 and includes a t-shirt. You can register by visiting www.awareness4life.myevent.com

And if this isn't your neck of the woods? Seriously? You need me to tell you? Donate anyway! Thank you.


Adding Mayor Annise Parker to the list of People Who Rock:

One Piece Of Advice

One piece of advice for parents raising a child with cavernous angiomas:

"Actually, I have three pieces of advice. One: When going for MRIs, make sure your child isn't wearing a certain brand of underwear that starts with an "H" and ends with an "S." If you get what I mean. A technician warned us they use metallic thread in some of their waistbands. Not sure it makes a difference, but, hey. 

The second is don't let them ever bring in a stuffed Pikachu. I have no clue what inside of it is metal, exactly, but something is. This we learned the hard way. It got sucked right into the machine. They weren't happy with us, either.

The third is be patient. With your kid, your spouse, but most of all yourself. Because you're going to screw up. Every parent does." -S, dad of son with multiple cavernomas.

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. 

News

No, wait. Yes. I am. Certain health care changes take effect September 23rd. Don't be confused yourself. Read more here and here.

Or here.

Here.

Here.

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

From The Outside in...

We were at the beach yesterday. A glorious day. Windy, not too hot. Hubby remembered to pack the Cape Cod potato chips. Perfect.

But then this woman stood in front of us. Hot orange robe. Bathing suit underneath. Mammoth black camera in her hands.

Her husband and three kids cavorted in the surf. Her youngest, a toddler with a thatch of deliciously blond hair that stuck straight up from his skull, kept running back to her. He would clutch her robe and throw himself down onto the sand, trying to take her with him. Trying.

She'd just shoo him off. She went back to directing her family. Jump in the waves. Climb that rock. Go out further. Smile.

Why the farce of even wearing a bathing suit, I wondered.

Hubby caught me frowning at her. You noticed, he said. I was just going to say something.

I squeezed his hand and said, What do you think she'll say? Here, look. The photos I took of you, living life. Without me. As I watched, yes, but as I watched from behind glass. As I filtered you from me.

He squeezed back, and we both eyed at our boys. Each in their beach chairs. Consumed in manga and iPods and bikini-watching. Each no longer so interested in dancing in the waves with their parents.

What I wanted to do was tackle her myself. To shout at her that little boys with blond hair grow up too quickly. That bad things can happen and steal the future away from you, how every moment is precious. That if she doesn't run into the surf now, she will never.

Instead Hubby offered me more potato chips and kissed me. I know we don't have photos, those keepsakes of our boys, he finally said. But I'm relieved.

Me, too.

Psst! Wanna buy a book?

They're cheap. And hey, they slice, they dice...you can even saw through a tin can with them.

No. You can't. Sorry. But your money will go to our favorite charity. So, if you're looking for a read, or ten, maybe consider helping this mom help others.

:)

Neurosurgical Focus Journal

Their September issue is dedicated to cavernous malformations. YES!! Check it out for free here.

Fundraiser Event!

Ogden Angioma Awareness 5K Fun Run/Walk 

Where:
Marquardt Park, Upper Bowery of Mt. Ogden Park
3240 Taylor Ave, Ogden, UT

When: 
September 11, 2010 from 8:30 am - 12:00 pm

Brooke Mueller is planning a Run/Walk event through the Mt Ogden Park and trails, providing a breathtaking backdrop. The event will hopefully open the public's eyes to a condition we have become intimately familiar with. Brooke was diagnosed at the age of 29, when hers led to seizures. She will be having brain surgery weeks after the race to remove the angioma. All proceeds will benefit the Angioma Alliance. There will be shirts, refreshments and prizes. Registration is $20/individuals or $15/person for teams of 4-6. Online registration closes on September 1.

To register, go to: http://www.active.com/register/index.cfm?CHECKSSO=0&EVENT_ID=1876780

Courtesy Angioma Alliance's event page.

One Piece Of Advice

One piece of advice for living with cavernous angiomas:

"You're not someone who has angiomas. The person you love is not someone who has angiomas. They are, you are, someone who happens to have angiomas. Don't let them define you, defeat you, or outshine the glory that's you. It's your choice."--Nurse J, family practice.