Friday, June 30, 2017

day 11: brave camp

It's late, we're all pretty exhausted after the last day of brave camp (more assessments tomorrow), but here are a few pictures. More stories to come.

Thursday, June 29, 2017


About 16 months ago I opened a package from Padre Island, Texas. 

It was from my good friend Jodi - a "suitcase of love" - about thirty little packages or gifts to open when the days just seemed too hard. 

It was a beach themed box, so suffice it to say I loved absolutely everything, but among  my very favorites were a black wrap bracelet, and this:

A little glass flip flop.

If we've crossed paths at all this year, you've seen them. I rarely take off the bracelet and I've never taken off the flip flop.

I couldn't.
Until now.

Because that flip flop was my tangible hope. It was something that I could wear, see, feel each day. It was my constant reminder that someday this cancer wouldn't be every breath we took. Someday, we would be back on a road trip, back to the ocean, back to living.

There were so many people that gave us hope this past year - and we are forever grateful, because more than anything else, it's what got us through - hope.

Today I got to watch Rico dunk Kooka into the ocean. And then I took my necklace off.

 (But I put it right back on.)

Monday, June 26, 2017

day 7 (I think): what brave means

We've all had to be brave this year - every single one of us. We've had to face fear chew it up and swallow it whole. But for each of us, it's meant something different.

Today, it meant Brave Camp for Tiny.
But it does not mean the same thing to every kid in her selective mutism camp. 

Tiny worked with her two private counselors Amy and Carolena today, and they said she was fantastic. But some kids are struggling to speak to adults. Some are struggling to speak to peers, some speak relatively well, except in certain circumstances. Some can respond, but have trouble reaching out. Most are a recipe of their own design - a little self-imposed rule here, a little anxiety there, and all of these parents desperately trying to figure out the rules, so they can teach their kid to play the game.

We take no credit for this whatsoever, but Tiny is pretty good at the camp game.

Tiny is excellent at the camp game.

The counselor say that Tiny is actually one of the best at the camp game.

Somebody actually removed us from their Facebook group presumably because Tiny wasn't "bad enough". I sort of thought that we were all in this together, but apparently not. Seems that there are "tiger parents" even when we're trying to help our kids through emotional and mental challenges. Whatevs. We're nothing if not resilient.

Oh, Tiny most certainly has selective mutism,  but we've been working with her for years. So far what we are learning as parents here, is really just reaffirming that some the work we've been doing is on the right track. She's a kid who's actually jumping the track in camp, but the rest of the world doesn't follow the same rules as Brave camp, and she is soooooooooooo onto this - onto us - onto them.

There are all sorts of things we are supposed to say to her on a regular basis to encourage her to verbally respond. Things like: would you rather have a cookie or a doughnut? (Forced choice question); I see you've chosen a green marker (reflection); I like how you're drawing a rainbow (labeled praise); and disallowing non verbal communication (i.e., recognizing a nod, but requiring a "yes answer"); and near constant praise for everything she says (unless it's rude) - "ahhhh you've noticed the ear hair in the waiter's ear - thanks for telling me that."

Although I think this is probably very helpful info for families struggling with SM, much of this is stuff we do, just in our own way, so forcing it is not only not working, it's actually becoming hilarious. Tiny is hacking the game, and we don't even know where to go from this point. 

So here we are, two days into camp, and I ask Tiny if she wants a napkin at dinner and she nods. So I ask, "You're nodding. Does that mean yes?"

"Puh-lease," she says, laughing "I'm not doing this. I want a napkin."

So we sit down to dinner, and she looks each of us dead in the eye, barely able to contain her laughter, and says, "Mom, I see your moving your lips when you eat."
"Kooka, I really like the way you picked up that cheese.
"Dad, I noticed you're using a spoon with your soup."

And then she busts out laughing. We all do, because talking like this feels ludicrous. And we know it's all our fault. We've talked to this kid like an adult since she the day she was born, and suddenly we're expected to become masters of celebrating the ultra-obvious like it's not freaking hilarious.

Thankfully, her counselors seem to have good senses of humor, and we're hoping it's all for the best. We're hoping that knowing how to play this game can translate for her into the greater world. You'll notice my fingers are crossed.
PS: Kooka was brave today by letting me put her in a stockade, swimming with barracudas and whatever else was out there, and Rico was brave by putting up with me when we were running late and I was out of my ever loving mind.


Sunday, June 25, 2017

days 6,7,8

  We should be settled by now, but we're not. There was the happy madness of visiting cousins, and trips to the ocean (more on that another time), and lead-ins for brave camp, and staying up late, and sunburns, and learning to dive and my brother and I teaching the next generation to play our made-up childhood games like "Little Joey Carrot" and "Help I Cant't Breathe" (don't ask). 

Today we made a trip to the Wynwood Art District for street tacos and cousin selfies at the Wynwood Walls.

We're all sort of in love with the art down here, everywhere we turn, we find a new favorite thing. But despite the crazy amazing tacos and the incredible art, and even the juice served straight out of the coconut, there was one thing that was best if all for Tiny.


She'd never seen one in her entire life, never heard the music-  don't think she even believed me when I told her that such a thing existed - so of course, I had to let her order something.

Tomorrow Brave camp starts in earnest and both a Rico and I are having some serious reservations. We'll say our prayers tonight and hope for the best, but if you would too, that would be extra great.

Friday, June 23, 2017

day 5:wtf

 Road tripping for us means trying something new every day. Maybe it's a new food, checking out a new bookstore, visiting a new museum, but we really do try to cram it all in.

Since we had the day off from brave camp, we decided that we'd see if we could sneak in an animal related adventure for Tiny, who - as far as creatures go - is one of our more adventurous children.

Instead of the zoo, or the seaquarium, or even the well-paved Monkey Jungle, we decided to head a little bit off the beaten path towards Safari Ed-ventures in Homestead, Florida.

The whole experience can be summed up in two syllables:

Da F#*@?


What was I thinking?
It is not an exaggeration to say that the heat, my herpetophobia, and generalized anxiety - this is what my version of hell would look like.

My first clue should have been the entrance:

We probably still could've gotten our money back after the bathroom. The latch (or lack thereof) clearly indicates that nobody's getting too comfortable in there anyway. The massive spiders hanging from the ceiling damn near spelled out Charlotte's Web style: "Get out!", and I'm pretty sure there toilet tank was pulling double duty as housing for the Burmese python.

The rest of the exhibit exhibited of twisted leaf-strewn pathways through the jungle - you know, the kind of brown, dead foliage that copperheads use to raise their families.

But even that I could handle. There was a little bit of ashphalt I could run to for safety. It was this right here:

Why no running?
I mean we're outdoors in the great-wide beyond, so why the big concern? 
I'll tell you why:
We paid $55 to walk into somebody's science experiment. God only knows what was lurking in the underbrush at this place, I swear a compsagnathus ran right across my foot - on it's hind legs! (I found him later by the cockatoo cage smoking a pack of camels and smack talking the lemurs).

I wasn't afraid of anything I actually saw there - including the python, tarantula, African bullfrog or alligator, all of which which I willingly admired and touched. It's what I COULDN'T SEE that was freaking me out.

But it wasn't all creeptastic. We also get to pet a kangaroo, hold a chinchilla and a ferret (Tiny's favorite). There was much oohing and ahhing over petting the sloth, and we got to walk into the wolf enclosure and pet all of the wolves too. 

Then it was a quick stop for fresh fruit smoothies and then back to the hotel for more cousins, more pool, more adventure.

Thursday, June 22, 2017

day 5 welcome to miami

It's rare that we get to park ourselves in one place for too long, so I'm pretty excited about our extended stay in Miami. Then again, after last summer, I'm pretty excited to be anywhere celebrating together.

Today was the start of sessions for Tiny's Brave Camp. We headed to FLorida a International a University which is by far the largest campus I've ever seen - but beautiful. Tiny did a really great job, and seemed to make a bit of progress even in just one day - though I think it'll take a full week and a bit more reflection before my final verdict. After some time being bserved (both with parents and with a counselor), we got a lunch break, so we picked up the big girls for lunch and macarons at the Dolphin Mall.

It's not quite the MOA, but the looooooong walkways certainly give ita run for its'money.  After lunch we headed to the middle school where camp will be held (and where the mascot is a giant shark) to check out the classroom and meet some other campers.

As far as the parent training goes, I don't feel like it's anything we didn't know, but a Tiny did earn 9 brave coins, so she felt it was a productive day.
Our hotel is rather spectacular for an Expedia find, and we spent a large part of the afternoon lounging in the pool and noshing on the free Cuban chicken salad the hotel provides for dinner. While we were at the pool, a lady and a little boy approached Tiny and said, "Hey, I recognize that face! We found one of your rocks!" 

Louie and his mom are staying at the same hotel, and found one of her rocks. They checked out her Instagram, and that's how a Tiny made her first new friend from her rock project.

After dinner we piled into the car to cruise down Ocean Drive and take a stroll down Lincoln Road on South Beach. We checked out Dylan's Candy Bar, 4D Gelato, tipped the breakdancers, visited the Britto Art dealer (which is my new favorite place), dropped rocks, and admired the street art.

It's midnight. Everyone is still awake, but we have the day off tomorrow - who knows what adventures we'll find.


Wednesday, June 21, 2017

day 4: georgia to miami

Not much to tell today, because we spent nine hours in the car.

We did stop at the Florida welcome center and to pick up a cousin, so that was a nice ten minute break.
Brave camp starts tomorrow.

Tuesday, June 20, 2017

day 3: kentucky, tennesee, georgia

OK, it's technically a roadtrip, but it's not up to our usually caliber. Usually we drive a few hours, stop someplace cool, take in a little local culture and ease on down the road, but with so much ground to cover in so little time, the stops are few - and quick. 

The upside, is that this ain't our first rodeo, and we knew exactly where to go: a quick stop in Nashville for a peek at he Grand Ole Opry (and a rock drop: "face the music" and "follow your dreams"), and a mango tea.

By the time we got to Chattanooga, we just followed the aroma to Sugar's BBQ. We've been to Chattanooga three times in our lives, and the last two we're just for a taste of the best brisket in the world (maybe the best food in the world- and although I am prone to poetic license, this is not one of those times - it's really that good) and homemade banana pudding, which makes all of s look like this: