Rare Disease Day 2011!

Okay. It sounds really wrong to say Happy Rare Disease Day, but I'm saying it anyway. For those of us dealing with these rare medical disorders it's a way to draw attention to our challenges. And that's huge because most of time, we get nada. Zilch. Squat. So it's something, and I'm saying Happy Rare Disease Day, dammnit.

HAPPY RARE DISEASE DAY!

Learn more, share, go here.

Time To Vote!

That's right. It's time to vote for your favorite entry in the Neuro Film Fest 2011. And not that we're trying to sway anyone's opinions...but we might have a suggestion on who to vote for...you know...if you wanted...you should...really...VOTE FOR PATTI!!!


Vote here.

That's right...

Registration is open!

Registration is now open for the 2011 Angioma Alliance Patient Conference in Dallas, Texas on March 25-27!!!

Just follow this link:

Here.

Registration IS limited, though. So go, go, go!!

Ten Things I Never Knew About Termites But Wish I Had...

1. They are sometimes referred to as “white ants.” Incorrectly, may I add. They're actually names are "huge pain in my derriere." Yes. It is. 

2. On a size to creation ratio, some species of termite can create a building the equivalent of 10 times the size of the Empire State Building without exerting great effort. Hah. 

3. They're blind. 

4. There's only a little over 2500 known species.

5. They tunnel and burrow out of sight all their lives, esp in places like the house we're trying to buy.

6. Speaking of ants, termites are one of the longest living insects in the world.  Some queens can live longer than a decade. The ones in the house we're trying to buy...they're immortal and just flat-out refuse to die.

7. They're also historically ancient...they've existed longer than even ants.

8. Termites are the only insects that make full use of their droppings in as many ways as possible. Literally.

Ew.

9. They cause severe damage to wood if they are left undiscovered or undisturbed for a long time. Therefore, having a termite inspection done prior to purchasing a home is always a good idea, especially when purchasing an older home. Be forewarned, however. It will screw up your closing, finances, and any possibility of a good night's sleep.

10. Having dined unchecked on the older home Hubby and I are attempting to purchase, termites are the bane of my existence and loss of my sanity all while leading to the depletion of my checking account and hopes and dreams. 

*sigh*

Angioma Alliance Weekend!!

Where????

DALLAS!!! Or okay, IRVING, TX, BUT HEY THAT'S CLOSE ENOUGH!!!

When????

MARCH 25-27, 2011!!!

Who????

EVERYONE!!!


What????

Friday, March 25th:
A get-together.

Saturday, March 26th:
Fun Run/Walk at T.W. Richardson Grove Park. Group gatherings and presentations at the Dallas Hyatt Place

Sunday, March 27th:
Presentations  by Angioma Alliance Chief  Scientific Officer Dr. Amy Akers  and TBA speakers, as well as group gatherings at the Dallas Hyatt Place.

The cost????
Registration for the entire weekend with the exception of the Fun Run/Walk will be $45 per adult.
Registration for Fun Run/Walk participants  is  $20.

How????

Check out http://angiomaalliance.org for the upcoming online registration and more info!!!!

Even better????

THEY HAVE LOTS AND LOTS OF DONUTS!!!!!!!! SQUUUUUUUEEEEEEEE!!!!!!!

Thinking Small

New Year's resolutions don't work for me.

They just don't. Maybe it's because they usually involve things I don't really want to do. You know, things like cutting back on coffee or donuts.

*shudder*

Maybe it's because they're no fun to carry out and just seem so daunting. Or maybe it's because they flat-out suck. They're something you know you're going to fail at...

But. They say the best (and only) way change is really incorporated in a person's life is to begin small. Giving up sugar is insane. But I could cut back to one less teaspoon in my coffee each morning this week.

Or. I think I could.

So maybe 2011 will be the year of thinking small for me. One donut less. One teaspoon of sugar less.  One person this week I reach to spread the word about Cavernous Angiomas. The blog is a good place to start. But I'm thinking I should add a link to my email signature. It's small. It's easy. I can do this. It might work, and the changes might stick. I think...

How about you? What are you thinking small about this year?

Happy New Year!!!

We wish you a wonderful New Year!!! May 2011 be healthy and happy for us all...

Love

Ah, traditions. We have a few. Most I can do without. Like the the blow-ups on the lawn or Hubby dressing up as an elf. (Yeah.) But there is one...a very special one...I couldn't do without.

Every holiday season, in the week before Christmas, we pack the kids in the car and head down to Boston. We visit the Frog Pond. We walk the Common and run through the lighted walkways. We pet the police horses, do a little shopping, and of course, grab a Starbucks eggnog latte, or ten. And then we work our way over to the North End, for it's there that Mike's Pastry lives (and can I just say, if Walmart is Hell on earth, than they are Heaven on earth.)

So, cooler in hand, we buy our Christmas chocolate chip cannolis. Enough for me and Hubby, and one for Santa. Because Santa, he doesn't want stupid cookies. No. He wants chocolate chip cannolis (heavy on the powdered sugar) from Mike's Pastry. 

And this has been the way. And all has been well. Until three years ago, when we walked into Mike's Pastry and there were only 2 chocolate chip cannoli left. Panic erupted. But what can you do? So we grabbed the last two and ran for the NH border.

That night, as we set out the milk and carrots, Bob looked at me concerned. 

"What are we going to do? We don't have enough cannoli for you and Dad and Santa."

I turned, pulled the box out of the fridge, and handed it to Bob. 

"Here," I said. "Dad and I don't need them. Santa can have these."

That's when a blood-curdling shriek erupted from Hubby, and he flew into the kitchen and snatched the box out of Bob's hands.

"You can't do that!" he said. "How can you waste our cannoli on Santa Claus like that?" He spun and thrust them back into the refrigerator. "Santa will just have to find his own cannolis. These are mine!"

Yeah.

I know.

Have no fear. I recovered the cannoli from the fridge and we left it for Santa, and he was incredibly pleased with our sacrifice and generosity. And Hubby, well. I figure one of these days, maybe, someone, like me, should take pity on him and have "The Talk" with him. He's getting a bit old for this...


So I did. And I thought it went well. Really well. Until last night.


You see, this time of year a local radio station has young children call in and speak to Santa*. It's delightful, hearing their excited voices as they count off their wish lists and assurances they will leave lots of cookies and milk and carrot for the reindeer.  It's also entertaining, these extensive wish lists and how Santa promises that if they've been good they'll get exactly what they wished for Christmas morning.


Apparently it's also perplexing, because as Hubby loaded the dishwasher while listening to that night's broadcast he turned to me, his face contorted in confusion.


"I don't get it," he said.


"You don't get what?"


"How does Santa manage to get them everything they want? And how does he know what they will be getting? He's just one guy."


*sigh*


I love that man. I do. So much. For being so wonderful and kind and believing in magic long after others have grown cynical to life.  Lonnnngggg after. I don't have the heart to explain it again. And really, maybe it's better that way.


I wish you all a Christmas filled with love and hope and faith, and magic and the knowledge that sometimes it's just okay to believe long after others have stopped. I wish you all lots of chocolate cannoli too. Especially me. I wish it on me. A lot.


Merry Christmas, everyone!


*Parents call the station and all requests are prescreened by staff before Santa actually speaks to the child. Therefore Santa is capable of speaking quite confidently on what each child will be receiving...

Faith

Twelve years ago:

I ignored the doctor as he spoke, at how his holiday-themed bow-tie was blinking. I blocked out the twittering interns clustered at the end of my baby’s bed. Instead I stroked his tiny, delicate fingers, careful to avoid the snaking tubes and wires.

“Let's see how he's doing later this afternoon. If there's some improvement. But right now I can't promise yet that you'll be home in time for Christmas,” he said. “I’m sorry.”

I acted like his words rolled off me. Pretended I was strong.

“Do you want us to get your husband for you?”

After three days in the hospital he didn’t need that. He deserved his break. However brief.

“No, I’m fine.”

They shuffled out. The monitors beeped, then hushed. I stared down at my son, at the blood-stained bandage swathing his head. Only six-weeks-old, he was a stranger to me. I was still getting to know this fragile creature, and the bruising and swelling from his cranial surgery made him indistinguishable. It left me too scared to pick him up, so afraid I’d hurt him further.

My breathing hitched. I shoved my chair back and stumbled for the bathroom. The door clicked shut behind me, and I slid down the cold tile wall as tears began to spill. I ignored the dark, the stench of bleach, and cried.

I thought of my other son, at home, waiting for his baby brother. The mounds of unopened gifts piled under our tree. How I dreamt of my baby’s first Christmas, and all of us together. Nothing had turned out as I’d hoped.

A timid knock startled me, and a wave of shame and guilt rocked me. I held my breath. Waited. Another stronger, more demanding knock rang out. I gave up and climbed to my feet. My back twinged in protest. I swiped at my tears and stepped out.

Santa Claus stared back at me, smiling. A group of teenagers were bunched behind him, huddled around my son's bed, my hometown’s name scrawled across their shirts. Our high school’s choir.

Santa wrapped his arm around me as they begin to sing. I burst into tears again. 

The carolers faltered, but continued. Just softer now. A frown crossed Santa's face, and over them he said, "What's wrong? Do you not want us to sing?"

I shook my head and wiped at my tears again. "It's not that," I finally said. I pointed to the nearest choir member's t-shirt.

“It's that town, that's where I live there. It's home. That's all."

He laughed. Relieved, I supposed. “Oh, that's wonderful! I bet you're going home for Christmas, aren't you?”

All I could do was shake my head again, and he stepped over and engulfed me in an enormous bear hug of fur and white beard and jingle bells.

 “Well then," he whispered in my ear, "it looks like Santa’s brought home to you for Christmas instead."

****

As I wrote yesterday, we did actually make it home in time. It's never ceased to amaze me,though, how life has shown over and over that even when my hope wanes, when my faith is shaken, things still always work themselves out in the end. Maybe not always the way I wanted or expected or even liked, but it always, always, works out in the end. 

I wish you all a Christmas Eve filled with hope and faith, as well a life overflowing with both.

Hope

If Thanksgiving is a time for appreciativeness, then Christmas is about hope. At least it has been for me.

This year I'm overwhelmed with it. Hope that this cold will FINALLY go away. Hope that Santa will deliver a signed purchase and sale contract on that new house for us. That this home search will end, once and for all. (And you would to if you'd seen the things we've seen: houses full of birds and life-size female mannequins dressed as superheroes, swings hanging from ceilings. Yes, you'd be praying for it to cease too. Truuuuusssssttttt meeeee.)

As I sit here waiting for the seller's final answer after countering the counter of our counter offer I can't help but realize how different this year is--how different my hopes have become.

***

Twelve years ago today, at this same exact hour, I was sitting, waiting. Soon the doctors would be making rounds. Soon we would know if our newborn son Bob would be going home for Christmas or not. I wished for it with all my heart--that he would be healthy enough to do so now that he was out of the ICU. But it was bittersweet, my hope. And it seemed so shallow.

Only days before he'd undergone neurosurgery. I'd sat there as well in the waiting room, frantic. My baby was only weeks old. It was only days before Christmas. In my protected lifetime, I'd never had to go through something so difficult, and it felt like my soul was about to crack under the fear and terror I was feeling. (Of course, I didn't know then I'd be back in that same room or same ICU with my oldest son. That this would become my life. But then the universe is kind that way, no?)

A woman was waiting across from me. Her face looked so familiar. Finally she came over and introduced herself. It turned out she was my old neighbor. Though she was a few years older, we'd grown up together, lived only houses apart. She'd once been a beauty pageant winner, the leader of the popular girls, someone I'd always been in awe of. She was still beautiful. Almost glowing.

She explained her seven-month-old son was undergoing surgery for a cancerous brain tumor. His second in less than twenty-four hours. The fifth of his short life. His brain had swollen, dangerously so. They weren't sure he'd make it. 

I remember staring at her. At how calm and together she seemed. At the pride that oozed from her as she described her baby and five other children. At her hope that he would pull through this surgery as he had the others. At all their hopes that the boy would live long enough so they could spend his first, and his last, Christmas Day with him.

But she'd made peace with it all. No one ever promised us we'd get a tomorrow, she'd said. So you live and love each day as hard as you can and just hope for that tomorrow.

Her hopes came true.

So did mine. However shallow and bittersweet I felt them to be--hope is hope is hope, after all. We made it home for Christmas, my husband and I and our tiny baby. Just as I'd dreamed. And I learned something I'd never forget, something that would get me through everything and anything that came into my life from that day forward. Even houses full of mannequins. 

Know that someone is struggling more, hurting more, losing more. Always. Be grateful for everything you have, and I mean everything, for it is so precious. Always. And have hope. No matter how dark or hopeless the situation seems. There is hope. Always. 

Especially at Christmas time.

I wish you all a hope-filled holiday season. I wish you all a hope-filled life. And meanwhile, I shall continue to hope that Santa shows up soon with that signed P&S before I explode from impatience--because I'm starting to suspect I really might if we don't hear something soon... 

Things I Hate:

Sinus infections and colds. ARGHHHHHHHH.

*cough*

*sniffle*

*cough*

Things I love:

Angioma Alliance's newsletter. Get the latest one here. And cold medicine. I adore cold medicine.

*SNOOOORRRRREEEEE*

Don't You Just Love Good News?

Me too, and this is indeed wonderful news.

Hurrah for Elizabeth on her successful surgery! (Go here.) And our best to her and her family as they start their journey down the road to full recovery. YAYYYYYYYYYY!!!!!

Today Is The Day

Just crawling out from under the covers to whisper you all a sniffly and snorty and sickly hello. It has been no fun, this week. Not even donuts could make me feel better right now, so you know I've been feeling realllyyyyyy under the weather.

Like REALLY bad.

I haven't gotten to emails or bills or laundry or yes, even the blog. The only thing I've attended to are my cold medicine stocks. But today, today I needed to poke my head out because today is December 10th.

I know that day doesn't mean much to most of you. But to Elizabeth and her family, it's a very important day. The day that marks a new journey for them. Because today is the day she's having surgery to remove her CM.

They're in my thoughts and prayers today. I hope you, too, will keep her in yours. To learn more about her and her story you can check out her blog here. She's named it "Thankful For Every Day." All I'll say is exactly.And can I also say, for the record, is there a single more adorable child to ever grace a blog header????

My best to them all. They're in incredible hands.

We Wish You A...

Have a wonderful holiday, everyone!!!