We originally created this blog to keep family and friends updated about our little man Jacob, who was diagnosed in the summer of 2011 with a rare, life-limiting genetic disease called Niemann-Pick (type A/B). Jacob earned his angel wings on November 15, 2012, but remains our daily inspiration and constant reminder that we must live in the moment and fill each day with JOY, LAUGHTER and an abundance of LOVE.

Sunday, July 28, 2013

'Feeling Like a Rockstar'

Well, more like a country star!! On Thursday night, I got to meet my absolute favorite musician and (okay, I'll admit it) celebrity crush -- Kenny Chesney!!!

Seriously, I think I am still pinching myself back to 'Reality'...this actually happened!!

I first listened to one of Kenny's country albums about 10 years ago and was hooked! I own every album, including the 'All I Want for Christmas is a Real Good Tan' Christmas album -- don't judge! At this point, I have actually lost track of how many Kenny concerts I have been to, but it's A LOT! And yes, maybe I have smuggled home a few concert "souvenirs" with his face on them. Kenny's feel good music just makes me want to sing out-loud, word for word, every time I hear his songs.

A few week's ago my in-laws came over to our home to share the exciting news that I would be meeting Kenny Chesney at the concert, which I had bought tickets for (months in advance). Say what!?! My jaw dropped and several times I repeated the words "ARE YOU KIDDING?" My father-in-law, Paul, had been diligently working on this surprise for several months and it finally came to fruition. A friend of his who had read Jacob's blog, shared it with some radio DJ's at KRTY 95.3 and they arranged for me to do a meet and greet with Kenny!! I got two passes and was able to bring along my best friend Jenna, who was actually the person who coerced me to listen to Kenny's music years ago.

To say I was nervous, is an understatement. I had butterflies in my stomach for at least 3 days prior to the concert. Of course, I also bought a new outfit for the occasion. This was a BIG DEAL!! I was so anxious on the day of the concert, that I decided we needed to make our way to the amphitheatre 5 1/2 hours before show time. We showed up before the parking lot even opened up, but hey...I wasn't going to risk missing my chance to meet Kenny!

We lined up at the backstage gates to meet Kenny and were escorted back by security for the meet and greet, where a professional photographer snapped our photo with the 'Big Star'. There was so much anticipation leading up to this moment and I know it may sound strange to some, but I could feel Jake all around me, which was incredibly special. I got to shake hands with Kenny before telling him about Jake and asking if he'd wear one of Jakey's wrist bands for our picture. Aside from being strikingly more handsome than I expected, Kenny was very gracious and said, "absolutely, I'll wear this for your son." Kenny put the blue PERSEVERE wrist band around his left wrist, which is where Josh and I wear ours. I got a little choked up, but I fought back the tears, so that I could get a good picture -- just check out the gigantic smile on my face below. He also signed a small poster that I had kept since my first Kenny concert back in 2005. Kenny was impressed!

Meeting Kenny Chesney was an amazing experience and the fact that he wore Jacob's wrist band truly meant the world to me! Being able to share Jacob and his story of perseverance with others is one of the ways I can honor him and continue to experience the difference he has made in this world.

As an extra added bonus, I got to spend the day with some of my best friends, and sing-a-long with thousands of other fans to some great music. Fun times!! If you want to talk about finding the JOY in your life, this is what it's all about.

Kenny Chesney and me (with about the biggest smile I could possibly have). Check out Jake's wrist band on Kenny's left arm, which happens to be wrapped around my shoulder.
Very special thanks to my father-in-law Paul for making this happen, as well as his friend Terry and KRTY 95.3.

Monday, July 15, 2013

Six Degrees of Seperation

If the first thing that popped into your head after reading this blog title was Kevin Bacon, well...you're kinda on the right track. When you remove the Hollywood glamour (a.k.a. eliminate Kevin Bacon from the equation) and think about it in more of a real life application, it's actually pretty amazing! Per Wikipedia, "the six degrees of separation is a theory that everyone in this world is six or fewer steps away, by way of introduction, from any other person in the world, so that a chain of "a friend of a friend" statements can be made to connect any two people in a maximum of six steps."

Today marks eight months since Jacob earned his angel wings. After I got off work, Kelly and I had a special visit with Jakey at the cemetery and for the first time since November, the 15th wasn't such a difficult day for me. That was until I got home to open the mail and read the recent newsletter from the National Niemann-Pick Disease Foundation, which basically hit me like a ton of bricks. I was flipping through the pages and saw my little man's sweet face amongst all the other brave NPD kiddos, whose families and friends have pulled together despite the most difficult of circumstances, to fundraise for research and cures for this devastating disease. I actually felt proud for a moment to see that so many people we know are helping to make a difference in the fight against the disease we despise! Then I turned to page 2 of the newsletter and saw Jacob's name, as well as several of our littlest of friends listed under a section titled "Memorials" -- queue tears and heart being pulled from my chest and stomped on, yet again!

Unfortunately, this is my reality. I live it every day, over and over. I never know if hearing Jacob's name or looking at his picture might bring a great big smile or trigger tears. What I do know, is that I never want people to forget about the incredible little boy that Jacob was and how many lives he touched in just two short years.

The other day, I was pleasantly reminded of the great impact Jake had on the hearts of others, when I received a message from my cousin. My cousin Mattie is spending her summer in Belgium running youth services/programs through Camp Adventure, which is an internship program that sends college students to work with military children on military bases throughout the world. Mattie is absolutely amazing with kids and is currently studying to be a teacher, so this program is a perfect fit for her. I know she's having a wonderful adventure herself as she's been traveling to nearby countries on her days off. While on one of her weekend adventures, she met another youngster who recognized her Joy of Jacob wristband because she has one too! Say what!?! Mind you, Mattie is on the other side of the WORLD right now! How could someone have possibly recognized one of Jacob's wristbands? Insert...six degrees of separation theory!!

Our world is truly small at times. It turns out that the other youngster is also partaking in the Camp Adventure program at a base in Germany, but lives in Chico, California where I went to college...and...she just happens to know one of my good friends (and college roomie). Crazy, right!?!

Needless to say, I'm still incredibly touched to know that Jake continues to make a difference in the lives of others and helped my cousin make a new friend all the way on the other side of the world.

Mattie holding Jakey on Christmas 2011

Never doubt just how special you are or the difference you can make in this world!! Love you little man!