Tuesday, April 5, 2016

Miracles from Heaven to Hollywood Part 1

"There are only two ways to live your life.  One is as though nothing is a miracle.  The other is as though everything is a miracle."
- Albert Einstein

I may have not been cured but recently experienced what I consider to be a downpour of miracles in my book.  As I shared in the previous post, my good friend Laura was able to score us tickets to the movie premiere for Miracles from Heaven on March 9th in Hollywood.  And the miraculous journey began by getting off the plane and meeting Laura in person (we connected through this very blog 2 years ago) for the first time. We shrieked and laughed and hugged, and I knew right away we were not only GP sisters but friends for life.

Days prior to departure it all began to sink in.  I was going to meet my GP bestie in Los Angeles, we were going to attend a real live movie premiere and after party, plus be in the same room as the Beam family, Jennifer Garner and Queen Latifah.  "What?!  No way, this couldn’t possibly be real," I continued to tell myself, for fear of something going wrong.  A major GP flare, a bad cold or you know, like aliens invading.  All to prevent something so incredibly cool from happening.

But low and behold, on Tuesday, March 8th, I found myself sitting in the little airport of Bellingham, WA, my leg nervously swinging back and forth trying to release the jitters.  Luckily the flight would be direct and only about two hours.  It flew by (pun intended hehe) and as I rounded the corner to baggage claim Laura jumps out to greet me with big hug…and our first of many selfies!  Immediately I knew being with her would be easy, as if we had been dear friends all of our life and perhaps previous ones too. 

Grabbing the luggage we made our way to the bus line that would connect us with the metro to downtown Hollywood.  Having both infused with TPN the previous night we were fueled with enough energy to get us through the first part of this day.  Though now looking back I’m pretty sure adrenaline had a lot to do with what felt like having a "traveling with GP" super power.   
During the trip we both experienced many firsts.  Our first airbnb, a small but modern apartment just blocks away from the premiere location.  Our first Uber rides, one where we met an interesting couple from Bermuda and Belize, both who came to LA to study film.  Whom by the way, Laura shocked by quickly telling them our story and bravely showing her bandaged chest port without a flinch while I quietly watched their jaws drop.  Yep, that's the kind of entertainment we provide.

Our first walk down Hollywood Blvd. where I took a photo of the Lassie star (dog lover much?!) and Laura captured herself with the Chicago star to represent where she came from.  Serious nerds haha.  Oh, and we can’t forget our first outing, one of two before the movie…Trader Joe’s!  We had to stock up on H2O and a few GP friendly snacks to hold us over, quite the adventure I tell ya. Warning...don't try to take a picture inside TJ's because there is actually a bodyguard standing in there who quickly barked at us that photos were not allowed. Strange place this Hollywood is.

The first evening Laura’s friend Jodi came to scoop Laura out for a bit to catch up.  Jodie and Laura were good friends growing up and she is also the amazing friend who got us the tickets.  I stayed at the apartment to rest and use the heating pad I brought with me in attempts to calm a bad flare.  A dear friend Terri, one of the very first people I connected with back in 2012 who also had GP came to visit as well. We had a chance to meet in 2014 in Encinitas, CA were my brother resides and have kept in touch.  Her husband was kind enough to drive her over and we spent the evening catching up and probably just as much time hugging goodbye.  Love you Terri!
Terri and I in 2014

Okay, I promise to get the premiere but first...

On day 2 we had hoped to have enough energy to make it to the showing of the Price is Right.  In fact, I'm pretty sure our parents were just as excited about that happening as they were about the movie.  It ended up being too much to cram in the day, knowing we had to save every ounce of energy for the evening.  So instead we rested all morning and grabbed a quick Uber ride to the infamous Grove.  Packed with shops, a farmers market, theater and restaurants, after a quick stroll through we settled for the green grass in the center next to the fountain.  It could not have been more perfect because right next to it was a cart with soft, red fleece blankets to sprawl out on.  Yes!  We could rest, people watch and listen to Frank Sinatra play over the loudspeaker. Perfect.

And as the sun began to set the time had come to get ready for the big night.  A night with red carpets, cameras and movie stars.  Okay, deep breath, we can do this.

The premiere was set to start at 7:30 and being Laura and I are seriously simple we had plenty of time to shower, doll up in our pretty green dresses and hook up the TPN.  Backpacks on (aka IV grub), we set up the Uber ride and arrived by 7:00.  Okay, it was only a couple blocks away but we absolutely needed every ounce of energy so, even if the driver had most likely been laughing at the shortest ride ever.  When we stepped out it was a bit confusing because here was this big, beautiful ArcLight theater but no paparazzi or for that matter, anyone in front.  We walked back and forth a few times then found a door on the side and walked into what looked like a regular showing of movies.  But then...we looked towards the other end where doors led into a courtyard and there it was, the red carpet, cameras and plenty of security.
We strolled right through and began checking out the scene.  On the far end there was a small gated section crammed with people holding posters and movie cases, anything for someone to sign I assumed. A few moments later she appeared, a most favorite actress of mine, Jennifer Garner looking pretty in pink with plenty of smiles.  I was shocked at the way people were screaming out her name for attention, begging to get something signed and pleading for a photo.  We stood back in awe and quietly snuck in a couple photos.  You can't really tell but I swear it's really her ;)


As it turns out we weren't actually supposed to be in this area where all the excitement was happening.  A security guard, who we later named Spec when meeting up with him yet again outside the after party club, kindly explained this to us.  And though we continued to get distracted as we tried to make our way back inside (did I mention red carpet, eek!) he was not far behind us as a gentle reminder to get moving!

So I'm going to wrap this up and take a break.  Many of you have asked me to share about the trip and so much happened I am still wrapping my brain around it all.  Next up I plan to share details about the actual movie showing, my thoughts on it, meeting the Beam family, the movie stars and even the sweet Dr. Nurko from Boston Children's. And of course what is next for us on the awareness and finding a cure bandwagon.

Wishing everyone the best belly day possible and I promise not to leave you hanging too long!
- Stephaine

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