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.  :)


Julie L said...

Kara, some posts I read and feel like I'm eavesdropping on a sweet and personal part of your life. This is one. I am crying as I read this and my heart goes out to all your family. I want to know your Uncle Jay. Thank you for sharing a little part of him with the rest of the world. And may God grant him and all of you strength and courage to face the road ahead. I love you.

Susie said...

Yes, Jay is such a good man with a wonderful family (including extended!) They have always made us feel welcomed in the couple of times we've been around them. It truly was nice to know Jason had family nearby while he was in NYC.