Sunday, July 23, 2017


No news posts, since we got home, but SOOOO much going on. Tiny's Rock party. Tiny's birthday, college shopping for Punk, Kooka's room makeover, scans for Rico tomorrow, and the front page of the newspaper - here.

We did not ask for a front page story about our kid - or her battles or anything else - I feel compelled to say this, because the article was just as much of a surprise to us as anyone.  (And weirdly, some people who talk to us often have almost seemed to avoid us in the wake of this, which of course raises my anxiety level and makes me think they think we asked for this, when in reality, the world does not revolve around what do or do not do, and it's quite possible that those people are otherwise occupied). What we did do was mention the rock party with the Minneapolis nonprofit to the people at the paper. They wanted to talk to Tiny, and in doing so, I had to explain her SM - because good lord, imagine being a young reporter and your gig is to interview a six year old - oh yeah, and let's make her mute  - super helpful.

In the process of doing so, the conversation turned a bit and the story became a bit more about the kid and her situation.

I'm not sure why I feel like I have to justify this.
Clearly I'm all about advocating, and spreading awareness.
I'm not about people thinking we utilized our kid for attention, or that we're trying to make her the literal poster child for anything at all.

We didn't post it on our own social media (though we thanked other people who mentioned it).  This is actually the first place we've mentioned it. And I'm only doing it now because of how proud and how empowered it made this kid feel. For once she was not the shy little sister of the funny actor, or the great dancer, or the daughter of the choreographer, or the cute kid who tags along to her dad's meetings. She was just Tiny, doing what Tiny does.

We are all enough.
Who you are is enough.
This week she felt it.

Wednesday, July 12, 2017

day 25: illinois, indiana, missouri,

If you asked where they've been on this 13 state road trip, I doubt they'd mention the mansions of Savannah, Lincoln's courthouse, or even the beautiful beaches of Miami. As a matter of fact, if you asked them about ANY of the lower 48 states we've been to, I don't think you'd hear about whitewater rafting in Yellowstone, biking down the Rocky Mountains, swimming in the Great Salt Lake or even seeing a show on Broadway.

But all three of them would agree on the recycled junkyard/playground that is the City Museum of St. Louis. 

We no sooner get into this place, and slap on our wristbands, when all three kids disappear, and I mean dis-a-freaking-pear. 

Down one chute and out another, the "caves" in this place require that anybody under the age of 16 be accompanied by an adult. Why? Good question, because I've been in those things and nobody over the age of 16 can scramble through these meerkat tunnels as fast as a six year old, so you'll lose your kid regardless of your spelunking skills. Your only real hope is that one of the big ones gets stuck, backs up traffic and gives you a minute to catch up.

There's really no proper explanation for this place, except to say that there is nothing "museum" about it. After three trips here, I still contend that it's either the most dangerous playground you can imagine, or the safest junkyard you've ever explored. You'll enter a dragon's mouth and come out of a whale's vagina - no I didn't make that up.

You can traverse the Roof via an old Cessna plane connected to a five story high ropes course, or you can climb to the third floor via a giant slinky. You can run in a giant hamster wheel or slide down a two story slide made of old printing rollers.

You can sip handmade Italian sodas next to the world's largest pair of underpants, or play a 1983 Donkey King machine for a quarter. 

You can watch the fish swimming in an aquarium made of recycled glass and clam shells, or pop a squat in the bathroom created of recycled cooking pans.

There's a room full of retired skateboarding ramps, three giant ball pits, a balance beam a toss a big pit of water and even a kids area which still requires some climbing skills.

We made this stop in part because the big kids ain't getting any younger, but judging from their reactions today, we'll see it again.


Turns out we bypassed Nashville, and headed straight for Bowling Green, Kentucky.

First was dinner at Blaze Pizza, followed by a trip to the Conundrum Workshop.

We've been to Escape Rooms before, but this one was different.

We spent an hour in the Mad Hatter's Tea room, and between Kooka's intensity, Punk's thinking outside of the box, and Tiny's attention to detail, we managed to escape (with just a three minute bonus). Despite trips to Disney, and Universal this was one of the highlights of our trip. One hour, locked in a room with nothing but each other and our collective wits was what we always hope for when we road trip. The owner Ken showed us around when we were finished. We got to check out the jailbreak room, the mad scientist room, the bank robbery room and even his gigantic drum set that he let all of us try.

After ice cream at McDonald's and a good night's sleep, we packed up and headed north to Horse Cave, Kentucky because of this place:

Kentucky Down Under.

We spent four hours galavanting with kangaroos, emus, lorikeets, tortoises, wallabies and peacocks. We followed it up with a cave tour and mining for gems.

 The lorikeets were our favorite. "Molty" had a special affinity for Punk, while "Iago" scared the crap out of all of us. 

Both big kids said it was one of the best parts of our trip, which made the 90 uphill hike worth it.

One more stop for ice cream and we're in Mount Vernon, Illinois, where the pool is crystal clear and the barbecue joint next door is killer.

Monday, July 10, 2017

day 23 asheville, knoxville, Nashville

Asheville, Nashville, Savannah, Sanibel, Ventura and Seattle, have been on the top of my relocation list ever since we started road tripping. But after my recent split with Savannah, there's room for a new contender. I know we just met today, but I believe in love at first sight.

We left Asheville this morning and were sort of lamenting the fact that we never seem to stay long enough. It's cute, it's friendly and it's not frying the rubber off the soles of our shoes - we love it.

But then we stumbled into Knoxville, Tennessee.

It's artsy, it's clean, it's friendly, and surprisingly hip.

We visited Market Square and Dogwood Park (Art In Public Places). 

The fountains.

The waterfalls.

The history.

The art.

The weather.

The Italian ices.

We're heading to Nashville now - which will have to ramp up its game, because I'm actually house shopping as we drive.

Sunday, July 9, 2017


If you've been with us for a while, you know of my personal affinity for Savannah. The slightly minty sweet tea; the Spanish moss; the kind of history that slows your walk to a stroll just so you can soak it in; the drawl; the fresh pralines; the way everybody calls each other darlin'; Rico's brother; the cobblestone roads, and the way every house on the square looks like a cleaner version of Disney's Haunted Mansion. Savannah is like that college boyfriend you know you shouldn't marry, but can't see any reason to break up with yet.

Until now.

It's an amicable split, but after three dates, Savannah and I have agreed - it just ain't gonna work out darlin'.

Most of the reasons fall firmly into the "it's not you - it's me" category, because there were no secrets - Savannah was pretty up front about this stuff from the start. 

Like the bugs. Lord love a cicada - they are freaking HUGE. I mean I knew this, but never had to deal with it until our nighttime stroll where cockroaches the size of small lizards were scuttling across our shoes. 

Then there's pace. In all honesty, it's part of what drew me to Savannah in the first place - nobody seems to be in too much of a hurry to get anywhere or do anything in particular. Sounds great until you're waiting for a server to bring you silverware, or standing in line in 100 degree heat to pick up your car. I mean, I love you Savannah - you do you - but I also know me, and my constant finger drumming, foot shuffling, and muttering under my breath would eventually drive a wedge between us anyway.

Let's talk about the sugar. 

The sugar is ev-ry-freaking-where. 

Want an unsweetened tea? Good luck.

Black beans and rice? Slight aftertaste of fruity pebbles.

Fries? First of all - sweet potatoes. Second -  sweet potatoes rolled in sugar (which didn't slow one of us down).

Don't misunderstand - the pralines at Savannah's Candy Kitchen alone are worth the 1,500 mile trip, and the peach cobbler at Sisters of The New South didn't last long under my spoon either, but all the same, fresh water and a toothbrush never felt so good. My blood sugar will be spiking until Kentucky - at least.

And then came the final straw Savannah - the "Got Ghosts" tour with Patrick Burns.

I did a lot of research and supposedly Patrick Burns was THEE man to give us a historical ghost tour. We were pretty excited. We'd visited  the cemeteries, and strolled the historic district, and we're sort of fascinated by the history of "The City Built on it's Dead." (Sad, but literally true - parts of the city are built right over large burial grounds.)

Despite the he approaching thunderstorm, we stopped in front of various homes, shops and theaters in Savannah's historic district (yeah, including the Mercer house from "Midnight In The Garden of Good and Evil"). 

We get to Calhoun Square, one of the houses on Abercorn, and he begins telling our group of 45 about the house there. He begins by berating the older lady who owns it, telling us how she's a jerk who doesn't like tour groups coming near her house and she only stays in the servants quarters even though she owns the whole house and "isn't that weird?" (Which isn't weird at all, because if I was an old lady I wouldn't want to live in a big @$$ house either, and I certainly wouldn't want hundreds of people coming by every night at 10:30). Anyway, as he's sharing this information, the lady comes out of said haunted house. Before she even says a word, he's jeering, "Oooh look, here she comes," and he's got this crowd of people holding their phones up recording her and laughing at her and pointing.

And this poor woman doesn't even cross the street to where we are. This old lady just comes out of her house and says, "Just keep your tour group together and don't shine lights on the house." And as she turns to walk away, Patrick starts shouting  "Be gone Spawn of Satan!" Over and over and over - truly at least 15/20 times, taunting her, like he wants to start something. (People were filming it, I'm not exaggerating, the proof is out there.) It was so bad, that a smaller tour group near us said, "That's so wrong," and left. The old lady retreats into her house, and he spends the next 5/10 minutes telling us how he's not doing anything wrong and it's his right to be there, and how she's a jerk. 

Friends, there is clearly an idiot in this story and it ain't the old lady. What kind of person does this you may ask? Well I asked the same thing of his wife, who explained that yes, he probably had gone too far, but this lady had harassed him before and plus there was another group that had shone a deer light on her house at night, but it wasn't them.

So now I feel like dog crap, because we have paid $125 for our family to be party to harassing some old lady that just wants some peace in her life. WTH Savannah? What's on tomorrow's docket? A fifty dollar ticket to throw rocks at puppies and make fun of kids with glasses? I do concur that there is the slight possibility that she was a planted actor, but it didn't seem like that, and eeeeeven if it were true, I really don't  want my kids to think that picking on old people is a form of entertainment. It  was truly all I could do to even stay with the group at that point, because WTH? 

Anyway, we'll give Savannah another shot someday, because despite the bugs, and candy-coated fries, I'm always gonna love it just a little bit.

Saturday, July 8, 2017

we were made to do hard things - i think

There are a few choice phrases I use often when parenting my three very different kids: 
1) Make good choices.
2) If it's important you'll find a way - if it's not, you'll find an excuse.
3) No matter where you go or who you're with, I always love you.
4) You were made to do hard things.

Number four is something I say often to a Tiny. She seems to need to need to hear it more than the others. I tell her how her great granddad stormed the beaches at Normandy, and show her the picture of the fallen 9000 etched in sand. 

I tell her how her grandma and dad fought cancer, how her grandpa was shot in Vietnam, and her Great Grandma June fought of armed robbers at her jewelry store. We talk about her other great grandma sailing around the world and her great-great grandma driving across the country when cars were barely invented. It's in her DNA, she was made to do hard things. We all were, but sometimes hard things are, well . . . hard.

If I had this trip to do over, I'm not sure how it would go.

Ten days of intensive therapy, followed by another 12 on the road is draining. We are all more tired than usual, all wishing for a few days to just "be". At the same time, keeping up momentum on the therapy is crucial to her success in tackling SM, so we keep finding ways to grow.

But growing up is hard. Especially for me.

This is the first year we've traveled with three adults - one of them barely - but still. I'm wondering when it will feel ok to let him go to the pool alone and not worry about when he's coming back. 

Kooka was barely 13 on our last road trip. Now she's almost old enough to drive, and certainly old enough to navigate the single riders line at Universal alone - or with her adult brother.

Even a Tiny is growing up these past few weeks. In addition to her new swimming skills and assertiveness training, she's got her first wiggly tooth, which means these are our last pictures with baby teeth.

We're on to Savannah next. Wish us luck. We may need it.

Friday, July 7, 2017

day ??? or-lannnn-do

I want to blog, but I'd rather sleep.

All four Disney Parks in two days.

Tiny is getting rellllly good at talking to sales clerks and waiters. We still need to work on asking questions, which will be a big push for us when we get home.

We sort of love our time at Staybridge Suites, but sort of hate being on the second floor with no elevator - thankfully it's not the fourth floor. Getting up 15 stairs with a cane is tough.

Tuesday, July 4, 2017

day: who knows, I lost track about a week ago

Per usual, we've been going full steam ahead ever since we left brave camp.

We were a little sad to leave Miami, but excited to see what Gumbo Limbo had in store for us.

Gumbo Limbo is a sea turtle rescue center in South Florida, and while we loved the adorable turtles, and happy little blue fish we visited, the real scene stealer was the box 'o poop hanging on the bathroom walls.

Next there was an overnight stop in Vero Beach, FL to visit Rico's childhood bestie Frank and his family.

Then it was off to Orlando, to uphold one of our promises to Tiny - when dad gets better, we'll visit Harry Potter's Village.

And as much as I love me some Harry Potter, and I do mean loooooooooooooove - if I never see Universal Studios again, it would be ok. 

The butter beer is great. The Hogwarts Express is cool. Jurassic Park is worth a trip, but the rest: ugggggggggggggggg.

For starters it's just too, how do you say it?
"People-y" for my tastes.
I'm not even talking about the lines - (which weren't terrible for us, since we often needed to use the handicapped accessible entrance) - I'm talking about trying to walk down the sidewalk without inhaling somebody else's twelve-hour old mid-summer Florida sweat. There just isn't room to move - and you can imagine how much people with anxiety love being surrounded by thousands of other sweaty, exhausted people in close quarters.

The rides are cool.
The first time.
But after the first two, you start to realize that all of Universal's rides are basically failed anti-gravity simulators for NASA. 

Time after time I was strapped into a five-point harness, forced to cover my already nearsighted eyes with an additional set of glasses, and forced to watch a 3-D movie while my seat was jostled, spun, swung and jerked to a complete stop. Throw in the ice-cold water and jets of fire they continue to spray in your face throughout each ordeal, and I think I'm a technically qualified Navy Seal.

But the kids loved it.

The next day was off to a Tampa, where we got to spend the fourth with my little brother and his family. His is the only house I know, where my kids can learn to pick locks with a professional lock picking kit, and light their sparklers with a homemade flamethrower consisting of bug spray and a blow torch. 

This might be, why he's our favorite.