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.

International Patient Registry

Just cause I haven't mentioned it in a while...check out the International Patient Registry.

NOW!

Fundraiser Event!

Party and Silent Auction!

When:
Saturday, August 21, 2010, in Plymouth, MA from 7 pm to 12 am


Where:
Loring Center
384 Court St
Plymouth, MA

Join Allison and Ken Ruggles and friends for a fun night of dancing, food, and bidding to support cavernous angioma research and awareness! To RSVP, email info@angioma.org

Fundraiser Event!

Yum! How we love this!!! It's not donuts, but still...A Flapjack Fundraiser!

When:
Saturday, July 31, 2010,  in Allentown, PA from 8 am to 10 am

Where:
Flapjack Fundraiser
Applebees
1510 Cedar Crest Blvd Allentown, PA

Join the scarves 4CCM1 girls at Cedar Crest Applebees for a flapjack breakfast and raffle to benefit Angioma Alliance. Tickets are $5 and can be purchased by emailing scarves4CCM1@yahoo.com.

Scarves4CCM1 is a group of Springhouse Middle School girls who have been knitting and selling scarves to benefit Angioma Alliance. They are branching out into organizing events and this is their first! Come out and support Kylie, Alexis, Addie, Kamee,Val and Rebecca and have a yummy breakfast, too!

To learn more about the Scarves4CCM1 group, visit http://www.facebook.com/group.php?gid=214295790136&v=wall&ref=ts or http://scarves4ccm1.piczo.com/?cr=2

Alberto Contado Wins

In 2004, Alberto Contado was diagnosed with a cavernous malformation and underwent successful surgery to remove it. In 2010, he's won his third Tour De France.

Congrats.

Let us add him to the People Who Rock.

Angioma Alliance Summer 2010 Newsletter is out!

Check it out. Events. Fundraisers. Tons of info. And two more medications that just might target cavernous malformations.

Nice.

International Patient Registry

Let's celebrate! There's now an international patient registry for those with CCMs. YES!! To register, see the latest research news, or just check it out, go here.

And an enormous thank you to those who took the time and effort to do this for us...many donuts we wish for you...and I wouldn't even ask you to share, for that is how much I love you for doing this.

Red Sox Nation Holds Its Breath

Yes. We at AS are proud, card-carrying members of Red Sox Nation, and we're holding our breath right now for one of our brethren.

Recently, nineteen-year-old Red Sox prospect Ryan Westmoreland was diagnosed with a cavernous malformation and underwent surgery. I remember when I heard I froze, and then sort of crumpled a bit. You see, BBB is just a year younger than Ryan. Though my son's doing well, I know what Ryan and his family are facing right now. So yes. I crumpled a bit.

We, a family who's kicking CCMs butt and fellow members of Red Sox Nation, wish Ryan and his family well. May he recover quickly.

Read more here, here, here, and here.