Saturday, August 31, 2013

Living in the Moment--Thanks Uncle Jay

I'm giving up on trying to post chronologically.  I simply can't keep up!  Life is charging past so quickly that it's dizzying.  But just to recap--we started the summer in Omaha, spent July in New York, relaxed at my grandpa's cabin in Vermont, traveled back to Omaha with friends from Lithuania via Niagara Falls, spent a few days in Hyde Park with the Wheeler grandparents, and finally made the rest of the drive back to St. George. 

Needless to say, it was wonderful to finally be back home.   The final stretch of road through the mountains of Color Country was both exhilarating and delightfully familiar.  In the midst of all the summer chaos, I'd forgotten the raw beauty of this patch of earth.  I'd forgotten how much I enjoy our cozy home with its playful driveway and built-in bookshelves.  (I did not, however, miss the gigantic black widow spider that tried to welcome us from a corner of the garage.  I quickly smashed that party.)

As nice as it was to be back, the house felt empty.  My heart felt empty.  Everything just felt wrong with Jason still gone.  So even though it was delightful to get back in a routine with the start of school the very next day, we crashed that routine.

We flew back to New York.

"What?" you say.  "That's crazy."  I know, I know.  It doesn't make much sense to drive 2500 miles from coast to coast, only to fly back a week later.  It's particularly questionable when you're traveling with four kids 8 and under--a feat that's both expensive and exhausting.

But sometimes life doesn't make sense.  Just ask my Uncle Jay.  You see, my uncle has ALS.  In case you are unfamiliar with the disease (as I was), here is a brief synopsis, taken from wikipedia.
Amyotrophic lateral sclerosis (ALS) – also referred to as motor neurone disease in some Commonwealth of Nations countries and as Lou Gehrig's disease in the United States – is a debilitating disease with varied etiology characterized by rapidly progressive weakness, muscle atrophy and fasciculations, muscle spasticity, difficulty speaking (dysarthria), difficulty swallowing (dysphagia), and difficulty breathing (dyspnea).
At this point in time, there is very little that can be done to treat, cure, or even slow the progression of ALS.  In fact, there isn't even a single test that can definitively diagnose it.  Your neurons simply degenerate to the the point that all other probable causes are ruled out. 

When we were with Jay and his family last summer in Lake George, we were concerned about ALS but hoped that it might turn out to be lyme disease instead.  We desperately wanted it to be something else, anything else, but all of our wishing didn't change the reality.

And so, now my Uncle Jay's creating a new reality--a reality where he communicates through his iPad and eats through a tube.  The truth is that we all have limited time on this earth, but Jay and his family are learning through the hardest of all experiences the value of the present moment.

Which is why, at the spur of the moment, we decided to pack up and go back to New York.  Earlier in the summer, Jay had started to extend an invitation for us to come and spend some time with them at the lake.  Silly me, I cut him short with an apology about how we couldn't come because the girls would be back in school.  Fortunately, I  came to my senses and realized that a week on the lake with my favorite uncle, aunt, and cousins is far more precious than a week of elementary school.

We had a lovely time.  We swam, sailed, rowed, fished, jet skied, hiked, caught newts, fed ducks, roasted marshmallows, played games, colored pictures, watched movies, and just enjoyed each others' company.  I don't have any photos since I left my camera out in the rain, but if my cousins happen to email me a few of their favorites, I'll get some pictures posted. 

As much as I want to put a positive spin on everything, the truth is that ALS really sucks.  It's hard to find much redeeming in a disease that robs you of your strength, your voice, even your ability to swallow.  It just doesn't seem fair to sit around the family dinner table pouring supplement down a tube while every one else enjoys hamburgers off the grill.  If I have a terminal disease, gosh dang it, I darn well better be able to enjoy my chocolate!  The injustice of mealtime paled, however, in comparison with the harrowing night two days ago when Jay was admitted to the ICU with aspiratory pneumonia.  We came to Lake George because we like the lake and love the Wells family--not to say any final goodbyes--but wowzers, that was a close call!  Jay's still in the hospital, but thankfully more stable.

And so Uncle Jay, if you happen to be reading this, please know that even though we're far away again in miles, you're still close to us in our thoughts and our prayers.  Thank you for the lovely week together--it was delightful.  When our whole crew crashes someone's home, I often feel like we're overbearing and loud, raining chaos wherever we go.  With your family, we always feel comfortable and welcome.  Have I told you that you have positively *amazing* kids?  They're creative, considerate, hard-working, fun-loving...chances are they get it from their Mom, but I think you should take some credit too.  :) 

Thanks for the adventures--like how we tried to row out to Diamond Island to fish before finally giving up and letting the jet ski tow us.  It was worth it though, watching Talia pull in that 14 1/2 inch bass--her first "keeper."  Truth is, you baited the hook, just like you baited mine three decades ago.

Last but not least, thanks for watching over my hubby during the past six months as he's worked in Manhattan.  No matter how rough his week at work, I knew he'd be okay if he spent the weekend with the Wells family.
Please know that we'd love to return the favor--any and/or all of your family is always welcome in our home.  In fact, why don't you send that prodigal adopted son Jason home too--say, tomorrow.  We've been missing him--just like we already miss all of you.  :)

Sunday, August 18, 2013


My extended family thinks I'm certifiably nuts.  (They're probably right.)  During the four weeks we were on Long Island, we explored more places than some New Yorkers visit over a lifetime.  I attribute this travelmania to three main sources: 1) a sense of urgency created by the realization that our summer on Long Island was a once in a lifetime experience, 2) a fun and inspiring travel guide that I checked out from the local library, and 3) kids that bicker and drive me crazy when they don't have anything to do.

And so, rather than stay home and listen to the munchkins whine, we went on dozens of daily excursions.  Here are some of our adventures:

The Cold Spring Harbor Fish Hatchery:
Thousands and thousands of trout.
We bought a huge bucket of food for the fish and though we might be there until dark as Eli doled out the morsels one nugget at a time.
Kate was a natural with Annika.

Jeanette and Kathryn with their Aunt Cathy--we were so glad they joined us for the afternoon.

The Long Island Children's Museum:
Jeanette shot this awesome photo of Talia.

Talia *adored* the bubbles.

Alesia helps Eli with his spoon puppet.

And Annika, just happy to be chilling.

"Who needs toys when you've got a fist to chew?"
Sagamore Hill:
So we didn't take many photos, but we spent a lovely Sunday afternoon exploring Sagamore Hill, Theodore Roosevelt's summer residence in nearby Oyster Bay.  The home is currently being remodeled, so I'd love to go back when construction is finished.
"Did you know Teddy Roosevelt walked this very path?"
Orient Point:
This secluded beach is located at the very most eastern tip of Long Island's northern fork. The drive there is beautiful, winding through lots of rural farmland and vineyards, not to mention unencumbered by the heavy traffic of the Hamptons.

The beach itself is rather rocky with lots of seaweed.  Not great for swimming, but just perfect for shell hunting.
Talia collected dozens of crab shells, but this horseshoe crab was definitely the largest!
We kept a close eye on this seagull...
...making sure Annika wasn't mistaken for bait.
After hiking a short distance, we discovered this magnificent salt water marsh with crystal clear water and silky smooth stones.

This water *was* perfect for swimming.
Happy explorers.
As usual, Annika was most content exploring  from the comfort of her sling.
And now for the ultimate balancing act--how to get all the loot back to the car!

Opposite Orient Point, Callie, the munchkins, and I explored Montauk while my Mom was in  New Orleans.  It's a long drive out to the northern fork but worth the trip--at least once a decade or so.

The world's greatest sister.  A dwarf to some, she's a giant to me.

Callie and some of her favorite nieces and nephews.
We like the Camelbaks because they identify the kids more tactfully than fluorescent T-shirts.
Nothing like a cool drink on a hot day, right Eli?
Montauk Beach:
So the kids thought that the lighthouse was okay, but they loved Montauk beach even better.  The south shore sand was soft, yet the waves were small enough that Talia felt comfortable venturing out.  I even felt comfortable enough to take Annika out for a wade.  (I won't tell you how a bigger wave came up from behind and knocked our hats off.  Bad Mommy moment...)

Callie, Talia and Eli.
TWA Flight 800 Memorial:
This peaceful memorial on Fire Island commemorates the 1996 explosion of TWA Flight 800, just twelve minutes after taking off from JFK for Paris.
Callie takes a moment to contemplate.
Kara, Talia, Jason, and Christy

The Library:
Closer to home, Greenlawn had an absolutely fantastic library with an amazing kid's section.  Here's Eli putting together a puzzle of the USA.  He claims that one of the Idaho potatoes looks like Papa Kay.

The Highline:
Back in the city, NomiAnn and Brooklyn explored the High Line (and more) with my mother's travel savvy compadre, Vicky.
Vicky showing Brooklyn their route on the map.
On the High Line.
Art as seen from above.

If you haven't had a chance to experience the High Line, go.  If you've already been, go again.

The New York Hall of Science:
A trip to La Guardia Airport to pick up NomiAnn turned into a great excuse to explore the nearby New York Hall of Science in Queens.  Equally exciting was the authentic Columbian food and classic Italian ices that we ate afterward.
Bubbles, anyone?

The Brooklyn Promenade:
We picnicked nearby because Jason's landlady Janice was just dying to meet Callie the movie star and learn all of her secrets about Richard Armitage.  (Sorry, not many secrets to be told except that he's kind of stuck up.)

Can you tell little feet are getting tired?
The Brooklyn Bridge:
Despite the distance, our well-trained St. George hikers handled the promenade and Brooklyn bridge without a hitch.  Here's Brooklyn on her bridge.

Sweet sisters.

Okay, almost without a hitch.  Here's our prince Eli, hitching a ride aboard Aunt Callie's shoulders.

Love this photo of our priceless Alesia.

Alesia's help was invaluable during our many excursions.

Ferry to the Rockaways:
So the stroll along the Brooklyn promenade and across the bridge wasn't that bad.  However, the unexpected (and lengthy) dash to catch the ferry to the Rocakaways just about did us in.  Because the Rockaways have been so inaccessible since Hurricane Sandy, the city is subsidizing a ferry through Labor Day.  For two dollars you can ride this amazing Seastreak all the way from East 34th street to the Rockaways.  While the distance from the subway to the pier was much farther than we anticipated, the ferry ride was worth the stress.  We went under the Brooklyn bridge, transferred at Wall Street, cruised past the Statue of Liberty, sailed beneath the Verrazano, and waved to Coney Island--the very best of the city for less than the cost of a one-way subway ticket.

Cruising beneath the Manhattan Bridge and coming up on the Brooklyn Bridge.  It's hard to tell from the picture, but the weather was absolutely perfect.
And there you have it: some of our Long Island excursions.  Other notable events that I didn't photograph:
  • the American Museum of Natural History (just think really big dinosaurs),
  • Central Park (having a map is a good idea, knowing how to read it is even better--mi culpa),
  • Heckscher State Park (watching the windsurfers is really cool--just don't try to swim near them),
  • the Rockaways (when you miss your train, take some time out for yummy pizza),
  • Taco Tuesdays at the Whale's Tale (we enjoyed two dollar Maui tacos three Tuesdays out of four),
  • Sunken Meadow State Park (the perfect place to barbecue hamburgers), and last but not least,
  • the kids' first slumber party at the Wells house (no matter how tired, Eli will stay awake for Minions.)
Is it any wonder I'm tired?  No wonder people think we're crazy.  But just for the sake of history, here's a brief "Best Of" list.

Funniest Moment:  During one excursion into the city, we put the kids' Camelbaks on the overhead luggage rack while riding the train in.  The train hit a bump, and all of a sudden this waterfall starts drenching Callie and Brooklyn.  Apparently one of the Camelbaks wasn't properly closed.  You should have seen Callie standing spread eagle on the seat, trying to simultaneously dodge the river of water while plugging up the torrent.

Runner Up for Funniest Moment:  While dining with my cousins at Friendly's following the Long Island Children's Museum, my Mom looks down the table and proudly announces:  "I've changed the diapers of every single one of you at this table."

Most Embarrassing Moment:  Immediately after sitting down for lunch in Central Park, Talia naturally announces that she needs to got the bathroom--now.  Lost as to where to go, we desperately start dashing around looking for a potty, oblivious to everything around us--until we walk right smack through the middle of a wedding, wandering past in the middle of the vows.

Luckiest Moment:  While swimming at Sunken Meadow State Park, Brooklyn reached down into the water and pulled out a twenty dollar bill.  I found twenty Monopoly dollars in the parking lot on the way back to the car, but she wouldn't trade.

Worst Moment:  While driving back from Montauk, I smooshed the door of my mother's minivan.  First accident ever.  Worst feeling ever.  The traffic was thick, we were in unfamiliar territory, and I didn't see the white car coming up in my blind spot as I changed lanes.  In retrospect, it could have been so much worse.  No one was hurt, the damage was relatively minor--we didn't even have to call the police.  Callie was an angel in helping sort out all the insurance details while I nursed Annie.  Even so, it was a moment I hope to never relive.

Scariest Moment:  We missed our first train back to Long Island from the Rockaways, so it was already quite dark as we made our way from the subway station to the train station in Far Roc.  Not a great section of town, I was already feeling tense when this car rolls by with music blaring and a person shouting.  What did they shout?  Directions to the station.  Throughout our entire time in New York, we were constantly surprised by how often people went out of their way to help us.

Yes, there's plenty of bad to go around in this world, but with so many good people to help, I'm always up for an excursion.

Governor's Island

Before attempting to drive across the entire United States of America (excepting California), we talked with all of our children about interesting things they might see and experience in New York--you know, stuff that would make the long trip worthwhile.

For Eli, the bait was simple--trains.  More than anything, he wanted to go to New York and ride a train.  So one Saturday in July, we purchased Family Fare tickets on the Long Island Railroad and headed into the city.

Eli was enthralled, staring out the window the entire time.
Our destination?  Governor's Island.  This gem of a public space is located 1/2 a mile off the southern tip of Manhattan and is accessible by free ferry.  The island is only open on weekends during the summer and early fall.  Even so, I can't believe I'd never been there before.  My only regret is that we didn't have time to stay longer.
They had a special exhibit featuring old French carousels while we were there.  Here's Talia riding the dragon.

I worried that Eli might freak out as this rickety wooden dragon gained speed, but he had a blast.

This piece of public art reminded me of "The Bean" in Chicago's Millenium Park.  The outside was created using thousands of empty milk jugs.

The inside featured thousands of water bottles.

Brooklyn marvels at all the plastic bottles we use.
I can never pass up a chance to shoot a picture of my hubby.
Case in point.

It's good to know that Central Park isn't the city's only expansive green space.

This game cracked me up.  I think the goal is to shoot the ball through the giant hula hoops attached to the verdant helmets.

Talia, getting all wrapped up in the art.

And here's Talia again, chatting with some friendly New Yorkers during the ferry ride home.

Jason was pretty tired on the ride home.  His work in New York has been exhausting--the commute to Long Island equally so.

Brooklyn was happy to entertain our Annabelle.

Some faces you just have to kiss,

Kara gets a turn with her darling.

My favorite part of this picture is the random guy peeking through.

Sweet dreams, amor.