Friday, August 26, 2016


I think Iowa is trying to kill me.


We can't drive through that state without having to take cover from a tornado or a flash flood or an escaped serial killer. They're probably gonna run atom bomb tests near Mason City next year.

It's a wonder we got home alive.

In the meantime, Yoda is filling Instagram with two-year-old videos of dolphins, like we just stepped off of a Royal Carribean Cruise.

We never got farther than Nebraska.

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Monday, August 22, 2016


Henry Doorly - because she says she didn't remember it the first two times. And it's sort of a family tradition (see early July 2014 posts for our full review - we can't do it justice tonight).

VooDooTacos, because where else can you get a spaghetti taco (or alligator)? Tiny of course dove into a pasta taco, while Rico and I had the barbacoa.

Desert at Jones Bros. cupcakes - because LOOK at this thing.

You're not half bad Omaha.

Sunday, August 21, 2016

poor decisions

Summer adventures are a little different this year.

1) We're missing two of our best adventurers.
2) Stuff built in the 1900's isn't very handicapped accessible.

But we're still trying to soak up all the summer we can.

It started with a visit to the Omaha Children's museum, where this summer's exhibits include a mini festival of nations. Today's interactive booths were hosted by Mexico - tortilla presses, Day-of-the-Dead piñatas and Frida Kahlo; Germany - spätzle with sausage, apple cider and soccer; and then we've got China.


Ohhhhh China.

Where every other country had 3-5 people working their booth, the Chinese came prepped like this was the olympics of ambassadorship - and they brought stuff.

Sooooo much stuff.

The writing demonstrations were beautiful. The karate was cool.
But the food?

I'm not talking about normal food. We're talking candy. Chinese candy. The kind of stuff none of us would probably crave under normal circumstances, but they had so much, so many different things, and hey - we're on an adventure, so off we went.

Moon cakes, sesame patties, coconut chews, jelly pots, seaweed crunchies, mango gummies, lychee cakes, rice cakes - yeah, I know, some of it SOUNDS good, but up close it didn't look remotely edible. Most of it tasted the same - overly sweet or salty or fishy and chewy and stale.

But the worst, the worst by far was the durian fruit roll. It looked like a little crispy piroulene - safe enough. But then the girl says to me, "No. No, you must smell it first. Smell it, because it smells very very terrible, but it tastes, um, well. . . good."

Nothing about that sentence was true.

First, nobody needs to smell it. Go ahead and Google "What is the smell of Durian?"
This is what you'll find: "Regarded as the king of fruit in much of south-east-Asia - is best known for it's pungent smell, variously compared to sewage, rotting flesh, or at BEST overripe cheese."

At best.

But I'll tell you what it really smelled like. Imagine the scent of stale diesel fuel. Now imagine feeding that fuel to a goat. Imagine that this goat has the stomach flu. Imagine that this goat farts, and then you light the fart on fire, and then you soak your cookie in the aroma of that jet fuel, goat diarrhea fart.

THAT is what that durian fruit roll smelled like.

So by this point you may be asking yourself why Yoda and I proceeded to EAT it.

To be fair, it was a COOKIE. I mean, no matter the scent, how bad could an innocent cookie be? And have you forgotten the tail end of that sweet Chinese girl's sentence? "It tastes, um, well . . .good."

All of it.

That cookie had the lingering taste of being force fed whatever was coming out of that stomach flu goat's backside for HOURS. Even Rico, who was smart enough to refuse the durian roll and tried a sesame stick instead, was pretty nauseous most of the day.

Only a dinner of lasagne at Old Spaghetti Works began to erase the damage to our taste buds. That, and a trip to Hollywood Candy in downtown Omaha, where we got lost in the dozen rooms of retro props, a Lady Gaga's piano, and thousands of jars of retro candy.

Tiny chose a tube full of blue squeezable marshmallow fluff, while Rico and I continued a day of bad decisions by sampling the chocolate covered corn. We clearly need more supervision.

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Saturday, August 20, 2016

road trip test run

I guess the real question is that that if Rico's feeling up to a road trip, why are we in Council Bluffs, Iowa? You know, the home of drive-through tabacco and booze huts.

Clearly, the families leaving the Golden Corral had not been fully satiated, as the line for this thing was a dozen cars long. But I digress . . .

The short answer to that question is: because we can.

The longer answer would be: because Omaha is closer than Chicago, and we couldn't sit still.

We don't feel comfortable going too far or too long, but we figured if we reversed our usual roles, we might be able to handle it.

I'm still not sure it's working out.

ME AS THE PASSENGER: Uuuuuuuuuuugggggg, are we there yet? There is nothing to dooooooo in Iowa. Can we turn it back to the 80's station? Uuuuuuuuuuugggggg are we there yet?

ME AS THE DRIVER: Hey, let's stop at the Windmill museum. Wanna check out this big rock Yoda? The sun - the sun is burning my retnas!!! How did I not see that lake before? Ooooh look a squirrel!

RICO AS THE DRIVER: If my estimations are correct, we'll arrive in DesMoines at approximately 12:23, just in time for lunch. Then we can make a short detour to pick ripe cherries for a snack, before getting to our hotel at roughly 6:13.

RICO AS THE PASSENGER: Zzzzzzzzzzzzzzzzzzzzzz. Ice cream - I need ice cream. Zzzzzzzzzzzzzzzzzz.

Regardless, we made it to Clear Lake, Iowa, before the rain hit.

We were there for one reason - a reason I can't believe we've bypassed so often. We stopped to pay to homage at the Surf Ballroom and the crash site memorial of Buddy Holly, Ritchie Valens and the Big Bopper.

My brother and I were raised by a 60's DJ who was waiting in Moorhead, Minnesota, for the concert that never happened. Our road trips consisted of Buddy Holly 8-tracks and lyrical lessons on "The Day The Music Died."

I'm still not sure how we found our way to the site through four miles of dirt roads. Rico asked me several times how I knew where I was going. My only answer was, "My Dad won't let us down."

He didn't. Despite bullfrogs and locusts of biblical proportions, Yoda and I braved ankle deep mud, to make the quarter mile trek through a Midwest cornfield to the crash site memorial. Rico held vigil at the van where at least two dozen others were making the same journey.

Four hours later, we found ourselves bypassing the windmill museum (hey, we'll be back, those are my people), and covering gummy bears and marshmallows in the chocolate fountain at Golden Corral - you know, because everybody's got their vice, and the line at the smoke shop drive through was just too d@m^ long.

Friday, August 19, 2016

summer nights

This was supposed to be the worst summer of our lives.

We spent most of May planning for what the best of the worst could be - surgery, leaving our kids alone, medications, mobility issues and rehab.

We tried not to think about what the worst of the worst could be.

It seems like every conversation we had with anyone was the same, "When is the surgery? What are the odds? How can we help?" and nearly always, it ended with the same question - "You're not still gonna do that show are you?"

I'd already started choreography in a hospital room of Mayo. I was working on it when Rico's doctor called and told me he thought the cancer had spread everywhere. He apologized for "dinking around" (his words - not mine). I went to auditions, but told the director that even in the best case, June would be unbearable - in the worst case - my life would be over.

It wasn't.

The doctor was wrong - and this girl was right:

Kooka and I were driving home from auditions when she asked how I was going to do it.
"I don't think I can." I told her.

She was pretty quiet. This wasn't her first rodeo, She knows what a huge undertaking summer musicals can be, so she was pretty thoughtful before she said, "Please do it with me.  It's gonna be hard, it's going to take all of our extra time" she said, "but I can help you. Saija and I can help you, it'll be OK. I don't want to do it without you."

I didn't say yes.
But I didn't say no.
Thankfully, neither did the director. He just said, "We'll figure it out as we go."
So we did.

Fast forward three months, and Kooka and I are making the same drive between home and the theater. "I was wrong," she said. "I thought it would suck up all of our time this summer, but really, we got so much more than we gave. I don't know what we would have done without it."

I do.

We would have cried more, laughed less, obsessed more, hugged less. We would have sat at home worrying, wondering, pacing, googling every fever, every cough. We would have wrapped ourselves in each other and "what-ifs?", instead of wrapping ourselves in the hugs of new friends and "what nexts?".

It's true that Tiny stayed up past her bedtime for three months straight. It's also true that we ate more frozen meals than we probably should, and topped it off with more late night ice-cream outings than the average family.

But Kooka was right - we got more than we gave.

Because while our hearts and minds were busy with new friends, new ideas, a new world - our lives got bigger than cancer, got better than cancer, and all of our summer nights felt right again.

Monday, August 15, 2016

how's your husband?

People ask this all of the time.

I don't really know how to answer.

Because if you'd asked me this question a year ago, I'd have said something like, "Holy crap, it's horrible. He can't walk without a walker, he's on ten different medications, he's got this permanent pair of lederhozen he's forced to wear to keep his leg from growing the size of a tree trunk, and he takes two naps a day. His leg is pretty much paralyzed, we have one of those handicapped hangers in our car, and sometimes he's in so much pain he randomly shouts out things that scare the dog."

But in light of what he's gone through, I'm more inclined to say, "Pretty good." And for now, it feels pretty good. It's not what it was - but it is a little better most every day.  The night sweats are gone, the walker was free, for now the medications are covered, the lederhozen have a cool tie-dye design, naps are underrated, he's still got the leg, can't complain about always getting the best parking spots, and at least he only swears in front of the dog.

I know he does not feel OK, but I know he fells better. We don't talk about the fact that last year we were wakeboarding in the ocean, racing each other around the roller rink, hosting neighborhood barbecques. We just leave that part out for now, and love what we have, because I think the secret to having it all . . . is believing you do.

Tuesday, August 9, 2016


We found this tonight.

Yeah, it's my own fault for taking my science loving six year-old out on a midnight stroll. Also my bad for bringing a flashlight (but better that we saw this thing than stepped on it -  or had it burrowing into my Keenes).  Though to be fair, what were the odds? Not of us finding one - but of her even being able to catch it?

Not only did she catch it, it damn near hopped right into her hand. And when she dropped him twice, one would assume he'd start hopping away for dear life. Nope. He pretty much just snuggled right up next to her and rode her shoulder the whole way home like a human uber.


Because toads are gross - they are. Not only that, but there are TWO gianormous problems with toads.

ONE: The only things that eat toads are snakes - and bigger toads.  So this is a no-win for me. No toads, means there must be snakes - or even bigger damn toads.

TWO: Toads are one of Punk's absolute favorite animals in the whole world, and he's passed this affinity to his baby sister. Don't believe me?

He's sleeping with it for Lord's sake!  Personally, I'd be fine with our lawn mover taking down an entire knot of toads, or planting some kind of toad poison, but I do realize that it would be the equivalent of Punk coming in after a hard day of yardwork and saying, "Hey mom, you may not wanna head outside for a few hours. I think I took down an entire pod of bottle-nosed dolphins out there."

So instead, we are feeding it.
You heard me - feeding it.
In case you're wondering, I forgot to feet the kid today, but Freddy (as in "Freddy My Love") will have all the crickets he can get his fat little mouth around.

My only hope is that when he eats - he'll stop making this noise. It haunts my dreams:

Wednesday, August 3, 2016

some things

Some things are harder to write about than others. It's one of the reasons I've been writing less. Some things are difficult to put into words. Some things I have no words for.

The thing I had no words for is called Li Fraumeni Syndrome. It's an inherited genetic disorder that not only leads to sarcomas, but greatly increases the risk of your child being diagnosed with aggressive childhood cancers. My lineage is less than stellar, so I had been tested at Mayo about eight years ago, and cleared. Rico had never been tested, and in light of his father's rare, (but curable) cancer, and Rico's aggressive sarcoma, we decided to have him undergo genetic testing as well. Knowing that our six year old could be a genetic lottery looser filled most of my waking moments.

Watching Rico struggle is difficult enough. Imagining this little face having to fight the same fight was unbearable.

Two months later, we have an answer. Rico does not seem to carry the gene for Li Fraumeni, so for now, for Yoda, we can breathe a collective sigh of relief.

In light of that, my other reason for writing less seems petty, but we have been sharing nearly everything, so here it is:

I'm sick of people telling me to "be grateful."

This little speech always seems to come from well-intentioned people, or those who barely know us, but are struggling for something to say.

"Consider yourself lucky," they say.
"Be grateful for the time you have," they'll tell us.

Nothing makes me more furious.
Because quite frankly, I am grateful. Rico is grateful. Our kids are grateful. If you look up "gratitude" in the dictionary, it's a picture of us, pointing to a picture of the Dalai Lama, with a bubble above our heads saying, "We have more."

How dare someone imply we are not grateful.

Gratitude is something we have in abundance. We have today. It looks like we'll have some good tomorrows, we understand the relative jackpot we've hit right now. We are so happy to be together, to have more hugs, more smiles, more ice cream nights, more snuggles. Every minute together is a gift.

But can we be real for a second? Our family of five has one driver for three employed people, a minimum of four doctor visits a week, as well as grocery shopping, dentist appointments, trips to the vet, pharmacy, bank and wherever else life takes us. One of us still requires some nursing assistance, another one still requires a babysitter, and two of us never get enough sleep, mostly because one of us is still fighting nightly nerve pain. Much of the stuff that Rico used to do is having to be relearned by the rest of us, not because he doesn't want to help, but because he can't. People assume that because he is home now, our lives are back to normal, but they are not - they are so far from not, and that takes some adjusting.

So some days are hard. They just are. And hearing a lecture about how we just need to suck it up and thank our lucky stars that we exist, just doesn't make them any better.

We are grateful.
We are blessed.
We know this. But when someone tells us that we should be, all we hear is that we have no right to feel frustrated or overwhelmed or even nostalgic for our usual summer adventures. We have no right to cry, or feel stressed or say anything but, "Wow, life's great."

Life is great.
The moments we have together are treasures we are thought we may never have.
But the journey isn't easy, and sometimes well-intentioned advice doesn't always hit its' mark. So that's why I haven't written, but maybe now it will be easier.

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