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Cross Country 2012, Day 8

Saturday, June 18th
Couer D’alene

It’s great to be in the beautiful Pacific Northwest. Perfect place for Steve to be for the summer. Very Huge Thanks to Ray Kish for opening his home to us.

We’re all happy to be reunited with the Martin family, even if Dave is annoying.
Great to hang out with Hattenburgs and Casey as well, who bake cookies and sleep in Rivers room for us:)

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Rivers likes to eat rocks and pine needles.

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The one thing that was missing: “Teeth Like the Sun.”
“Walks on Wheels” and “Toes like a sloth” and “Bebe Rios” all really missed him – and were very happy when he pulled in to Black Rock.

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8 days later we’re safe and sound at our final destination. Cross Country 2012, success.


Cross Country 2012, Day 7

Friday, June 15, 2012
Las Vegas – Couer D’alene, Idaho

I woke up feeling desperate. Exhausted and very worried about Steve’s wheelchair situation.
But.. Thanks to Jeff in Nola and Troy and Todd from Permobil and Nick in Vegas, they found us a loaner chair, similar to Steve’s. Hallelujah.

I called our friend Dave Martin, who we will be spending the summer with, and he must have heard my desperation and exhaustion, because next thing you know – Steve, Rivers, and I were scheduled to fly in a jet 3 hours later straight to Idaho.

So we hugged Blair goodbye and thanked him for driving the MV-1 the rest of the way.

We rolled out of the Bellagio.

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And met up with Dave and Ray at Atlantic Aviation.

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We were very skeptical about fitting Steves chair on the jet but Dave said they’d make it work.. So, we head to the Lear jet.

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And it was definitely NOT easy getting the chair into the jet. Even though the loaner is quite a bit smaller.

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After some grueling lifting and shoving, the chair was on. We successfully fit a square into a circle. And we were off.

2 hours later we landed. Huge thanks to Dave Martin for setting this up.

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Goodbye Vegas

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Hello Black Rock!

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Cross Country 2012, Day 6

Thursday, June 14, 2012
Las Vegas

Another bad night sleep for Rivers in a hotel bathroom.

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I got him dressed and went downstairs around 6:30. Luckily Vegas ends late/starts early.
Apparently Rivers didn’t feel exhausted like his mom did.

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The day started out pretty swell, walking through the streets of Vegas.

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However. A little while later.. We went to Caesar Hotel to go to the Apple Store and had to pay a lot of $$ to fix a phone. One of us got a bladder infection, and Steve’s wheelchair started rolling only in circles.
So once again, “Teeth like the Sun” had to push the wheelchair. Luckily he’s built like an ox bc that’s 500 pounds of heavyweight.
After a couple of calls we had people around the country trying to fix the problem (turns out it’s the motor).

So the repair guy Nick tried for a couple of hours to fix it, but he couldnt AND we were not going to get the motor until Monday. Terrible news because pushing this chair for the next 4 days was going to be brutal.

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Spirits were kind of low at this point, but we went downstairs and rented a scooter. Turned out too tough for Steve to drive so we did it the old fashioned way, with me on his lap driving, and Manny Blair pushing the kid in the stroller next to us.

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Looking a lot more like the griswolds and less like a wolf pack,
We crossed the street in our rolling posse and got stuck in the middle of a left turn lane. I drove us too fast and made a right turn and nearly dropped Steve off the back of the scooter.
He was not happy.

But. The night turned out well, as it usually does.

We met some people from Nola:

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And Blair got one of those dumb big drinks.

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We shot a cool time lapse and called it a night. Rivers fell asleep in Manny Blair’s arms on the way home.


Cross Country 2012, Day 5

Wednesday, June 13, 2012
Grand Canyon – Las Vegas

So. Rivers has changed from a 9pm – 745am sleep schedule to waking up at midnight, 3, 5, and 6am. Being in hotels is tough – I can’t let him cry himself back to sleep because I don’t want to be an a-hole to the neighbors.
So… When Steve and Blair woke up really early to go shoot a time lapse of the Grand Canyon – I literally found myself with my hands around Steve’s neck in frustration of sleep deprivation.

Right after they left, I realized I should have gone with them because it was 530am and Rivers was wide awake, cranky and wanting to Chatty Cathy. He decided to stay awake til about 5 minutes before the boys came home – which was around 10.

On their end.. Blair and Steve left at 430 to head to the GC. They set up the camera for their first time lapse, had breakfast at the lodge and then set the camera up for the second time lapse. They left their spot for 5 minutes, and even though they hid the phone with a large rock, a lady picked it up and turned it in to the lodge.

At the same time, I was pacing back and forth in the room because I had no money or toys for rivers, no phone reception, and was too chilly to go outside because im a pansy, texting Steve and Blair to hurry the f home. And then I got this text..

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So the honest girl meant well, but not only did she move the camera from a prime spot, she deleted the time lapse app, erasing both shots from the day.

Once I got this text, I realized I could text with wifi so I got my brother Vinnie to call Blair. He wrote back that “Blair was pushing Steve up the Grand Canyon”, that they knew about the phone, but he had to go.
***Side note. Last night after we checked into our room, Blair (also named by Steve at the Ruins, “Teeth like the Sun”, rushed into our room, panting, dropped Rivers on the ground and said “I’ll be right back, Steve’s battery died, he’s stuck in the woods and has a halo of Mosquitos around his face”. The sucky part is, well, the suckiest part of this is that Steve can no longer swat flies from his face. So that’s a bad situation. Blair ran back and pushed Steve up the hill into safety.

(this pic happened right before the bAttery died)

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Anyhow. We drove back to the Grand Canyon.
The Canyon is indeed Grand.

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Las Vegas, here comes the Gleasons…
We’d like to point out here that Steve and I used to be extremely low maintenance travelers. We’d never go anywhere with more than a backpack.

Things have changed in 2012. We pulled up to the Bellagio with a uhaul. Blair was frazzled because i was stressed bc we were running late and the iPhone map got us lost.
We handed the bellhop everything from wedge pillows to walkers to nukes to dirty clothes bags to formula and bottles to subway bags full of dirty diapers to pill organizers to strollers to wheelchair chargers, you name it – it was on the cart.

Uncle Ronnie set us up with a babysitter and tickets to The Cirque de Soleil “O” show and to dinner at Mon Ami Gabi. In 6 minutes we got the sitter set up, changed and head to the show.

For those who have not seen this, We would all three strongly recommend it. It’s like the grand canyon. You feel like a doofus however you try to describe it.
Steve adds that he thinks it would go well with the head scratcher..

We crossed the street to the Paris Hotel for dinner.

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Very good, especially the frisée kale salad with bacon and whipped cauliflower.

Steve’s first lap dance of the night
(of 2)…

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What happens in Vegas.


Cross Country 2012, Day 4

Tuesday, June 12, 2012
Aztec, NM – Jacob’s Lake Inn (40 miles from Grand Canyon)

Interrupted sleep due to Rivers up every couple of hours and a 3am bathroom incident. Our apologies to the Step Back Inn..

First stop – Aztec Ruins, actually Pueblo Indian Ruins circa 1100-1300. Really cool.

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We did a self guided tour. In all honesty, it was hard to understand the book.

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Steve checked on ancient pueblo ADA regulations.

Steve set up his iPhone for a time lapse on the edge of a deep, circular ruin.

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When we came back to retrieve it, the phone was gone. I looked down in the pit and there it was, laying on its back in the ruin that you’re not supposed to touch.

So the volunteers called the authorities and were instructed to call the archaeologist.

Vern, the archaeologist, hopped in the Pitt and got the phone. Unfortunately, the time lapse was gone, which unfortunately happens to steve occasionally.

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Awesome place. Makes me want to go home and clean out the house.

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Next stop. The Four Corners! It’s not in our “1000 things to see book”, which makes me wonder how credible this book is..

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At the next gas stop, right after Rivers learned how to crawl out of his seat

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He had an explosion so he pulled up to the Jacob’s Lake Inn in his skins

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After a dinner with the boys we went to sleep.

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Cross Country 2012 Day 3

Monday, June 11, 2012
Tucima to Aztec, MN

For the record, today’s blog is pretty boring.

Woke up in the motel, happy to be unscathed, and head to Santa Fe.

We listened to the England vs France
Euro Cup Game on the way.
(1-1)

Stopped to check out the Santa Fe Opera House (checked off in our book)

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We walked/rolled around an art district (all wheelchair accessible:).

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Blair met a gal named Blair. She’s an artist. She asked him he was our nanny. Hence his new nickname, Manny.

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We stopped for the night at “The Step Back Inn” in Aztec, NM, where we tomorrow will hopefully see aliens, and will definitely see ruins.


Cross Country 2012, Day 2

June 10th, 2012 (Happy Anniversary Jill and Paul Varisco!)
Fort Worth to Route 66, Tucumcari

(for the record, no disrespect for Fort Worth.. It’s a great city, we just hit a shady spot)

First night of sleep kind of rough for Rivers.
He took his first hotel bath today.

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And had one of his daily rides with his dad.

First stop – Fort Worth Stock Yards — to cross this out in our “1000 things to see before you die book”. (For the record, we got this book in 2008 pre-diagnosis:)

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Lunch at Taco Casa.
No shortage of cheese at this fine establishment.
Can guarantee stomach aches in about 2 hours.

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Stopped at a local Target (Rivers first buggy ride)

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to get a bunch of these

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Which are good for both Steve and Rivers.

Ended up tonight on Route 66 (another spot in our book). Warm and dry wind. Perfect.
Steve shot a 300 seconds

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and we ate at the one place in the area that was open and not deserted, Pow Wow Restaurant.

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Picked the Budget Inn because of location and advertisement of “wifi and HBO”, of which it had neither. We were definitely excited in a nervous way, looked like a site for a scary movie..
and the check in girl added to the unease. Seemed like a nice girl but up close looked like she was in The Thriller video.

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Luckily for all of us, she did not end up in Blair’s room…


Cross Country 2012, Day 1

Saturday, June 9th, 2012
Nola – Dallas/Fort Worth

So. We’ve decided to add our Cross Country 2012 trek to the Shunpike Expedition.
Final destination: Couer D’alene Idaho.
We have two new travelers this year:
Rivers Gleason, age 7.5 month and Blair Casey, Gleason Family G.M.

We were scheduled to leave on June 5th – but due to an ankle staff infection on Steve, croup and ear infections on Rivers and Strep throat on Michel – Friday June 9th was our day of departure.

We’re driving the MV-1 with a tiny Uhaul attached.

After lots of help from friends, fam, and mostly my parents, we said our goodbyes and rolled out, approx 12pm.

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We had no idea what route we were gonna take until we drove away.
We decided Dallas as we approached the interstate.

First stop… Krotz Springs, Cajun Cafe.

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Here, we ate boudin balls, meat pies, cracklins. Very HOT.
Good – but doesn’t compare to the Jazz Fest.

Rivers new trick.. He sits on his dads lap and reaches for things on the table. Today, he couldn’t reach so he grabbed Steve’s joystick on the wheelchair and rammed them into the table. No one was hurt. It was awesome.

Next stop – fuel up at Shreveport.

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Dallas hotels were sold out for some country band in town plus a republican convention.
So – Blair drove his 10th straight hour to Fort Worth.

As we pulled into the last gas station for the night we saw 3 guys riding horses, two chasing after the other one, on the interstate…
Thinking we were probably in a rough neighborhood we drove past a couple of fellas that threw a gang sign to Blair, followed by the fact that there were seven bail bond shops on a street somewhat close to our hotel, we thought it best to get a lock to attach our trailer to the car, so we spent the next hour driving through neighborhoods with all Spanish billboards and signs.

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We finally found a truck stop and walked in to a guy sleeping at the counter. We said “hi.” Nothing. We said “Bobby?”. Nothing. Blair yelled “BOBBY!” He woke up, his hands immediately going in his pants, and he directed us to the locks.

We pulled up to our hotel around midnight and there were two guides on horse and buggies riding down our street.

Fort Worth is interesting.

We were all ready for bed after a long, eventful day. Especially Blair.

*** this journey is in memory and honor of Maelan Elizabeth Graffagnini, our little angel watching over us all. ***

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Welcome Home Steve-o!!!!

Friday, September 9, 2011

Steve and Jim pulled onto Grand Route St John in the IronHorse at 12:45pm today!!

After a quick and exciting welcome home, we went to lunch at Mr John’s –
and were joined by:
Thad, Madeline and Chris, Thais and Marcus, Allison and Neil – and visited by Shawn, Pauly, and Willy P.

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3 hours after lunch we had a welcome home dinner at Mila – joined by:
Vin, Jules, Pauly, Hil, Thomas, Kerry, Mad, and Chris.

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The 11 day wait is finally over.
I’m so happy to have Steve back home. And I’m so grateful to Matt, Mikey Mo, and Jim for getting him back safe and sound to me.

PS – the IronHorse smells like crap…


Music Heals

Sept. 3, 2011: a doozie of a post.

If music heals, and I’m sure it does, I am a healthy boy.
Music can foster an energy that hard to tap into. Music can be calming or powerful or angry or inspiring. Or healing.
I love hearing a song and having it take me to a memory with feelings so real its as if they are brand new.
This weekend was an incredible reunion of friends who are like family to me.

Yesterday I received a text message from a great high-school buddy, Josh Hartnett.
As follows…

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I am not even sure how to explain the rest of this plot. It turns out that Josh was at the show with a guy named Chris. Well, Matt and Chris have been corresponding for the last month or so. Why? Because Matt, being Matt…

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was trying to get the best connection possible to enhance our PJ 20 experience.

Back Story: Through a friend, Erica Perkins, I connected with Mike and Ashley McCready a few years ago and I got to go backstage a couple times for PJ shows. Me, being me…

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I never really want to ‘bother’ Mike if I’m going to a PJ show especially a 20th year anniversary show.
Well, it turns out (hold on tight here) that Chris works for Mike and Matt was talking to Chris and Chris knows Josh and Matt knows Josh and I know Josh and Matt and Mike. But none of us really knew that we knew each other until this text (see above)!
Whew!

Long story short, Matt and I left Spokane four days ago content with any version of Pearl Jam’s 20th anniversary show. Then we picked up Mike Moses… Then Salters arrives… Then Hartnett…

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Next thing I know we are camped out on the hill overlooking the amphitheater. Then we are all shining love on eachother in the VIP tent behind the stage talking about the best of times.

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Mike and Ashley came down to catch up and say hello.

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And Ashley, being Ashley…

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…says she wants us side stage for the show. Then she does a little wave of her hand and has someone print these up.

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So, why not? Better now than never right?

Play this video for my exact pre show thought:

And then…
The lights dropped and things got crazy…

The man:

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“…Let me run into the rain
To be a human light again…”

So we were on stage. Rockin in the free world. For two nights. Cameras. Bodyguards. Crowds. Tambourines. Set-lists. And it was incredible.

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But at some point on the second night during ‘Given to Fly’, I walked over to Matt and hugged him and we started weeping.
It’s his favorite song.
And suddenly this wasn’t about passes or access or crowds.
It was about music and friendship. A good combination. I went to middle america with an intention. An intention to enjoy the band that built the soundtrack of our lives with my friend. And it infected the people we met up with. More friends. New friends. Family. And even when life turns brutal and impossible the soundtrack remains to hold us together. Even if we are weeping. The soundtrack remains.

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“…And he still gives his love, he just gives it away
The love he receives is the love that is saved…”


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