Now, where did I leave off...
Oh yes, we were kicked out of the red carpet area. No biggie, worth "getting lost." We headed inside the magnificent Arclight Theater and stepped aside to enjoy the people watching. As some of the cast members made their way through we were able to get a few photos with a couple of them before the movie began.
To the right is Kylie Rogers who stars as Anna Beam, the young girl who was sick with dysmotility. She is so sweet and adorable!
The the left is Brighton Sharbino, who plays Anna's older sister Abbie Beam. I later recognized her as Lizzie from The Walking Dead series (one of my guilty pleasures!).
From here we made our way up the stairs to the theater where the movie would play. It was strange because it felt so familiar and normal, the smell of fresh popcorn, people sipping giant soda's through a straw; yet so fancy and special at the same time. We found our seats (which just happened to be only a few rows back, smack dab in the center :) and sat in awe, giggling like we were 12 as we kept turning our heads to look for movie stars behind us. Hmm, see anyone?!
Before the movie began the producer, Patricia Riggin, stood up front to thank everyone for being a part of the project, which kind of felt like watching an award show. Then the lights went dim and the movie began.
What I will share about the movie itself is that first, it definitely exceeded my expectations. For so long I was worried that it would be fluffy, not truly represent what some of us have experienced with a serious and chronic digestive disorder, and that most of the movie would focus only on the religious experience of how she was cured. Instead, it opened with the comfort of family, love and the somewhat day to day life on a Texas farm. When Anna became sick and quickly went downhill, it showed not only how much she struggled but how much the family did as well. It portrayed the desperation of not getting any clear answers as to why she was doubled over in so much pain. When doctors brought up stress or lactose intolerance, Laura and I just looked at each other knowing what each was thinking..."Yes, I have so been there!". When they end up in the ER, the following scene plays out and just pulls at your heartstrings.
Dr. Todd Blythe: "Everything’s fine."
Christy Beam: "Everything is not fine. There’s something wrong with our little girl."
Dr. Todd Blythe: "Mrs. Beam, you need to calm down."
Christy Beam: "I’m not leaving this hospital until I know what’s wrong with my daughter!"
You could hear sniffles all around us and the ladies sitting next to me had tissues over their eyes. Clearly the story, this terrible disorder that many are so unfamiliar with, was now directly affecting many in the room. Meanwhile, Laura and I shed our own tears, coming from a place of familiarity, of having been in so many of the exact same scenarios as Anna and her family. During the quieter moments of the movie I could hear the soft rumble of our TPN pumps, slowly infusing nutrition into our veins. I silently wondered if anyone else could hear this and if they had any idea that this was our life too.
Eventually they make the trips to Boston Children's hospital and the familiar experiences continue to repeat themselves; trying desperately to get in to see a specialist, numerous invasive tests, tubes going through the nose and down the throat for enteral feeds, the sad look in doctors' eyes when they realize there is nothing more they can do, that there is no cure. Not to mention the grief of family members and watching how all of this is tearing them apart. That part, in my opinion, has probably been harder than any procedure or pain I have endured and sure many would agree.
Miracles from Heaven isn't all tears and heartache. There are lighthearted moments of comic relief, especially when Queen Latifah enters the picture with one of my favorite quotes from the movie, "You either roll with it or you get rolled on," and the families faith and strength that bring smiles and laughter. When the tree accident occurs, I found myself holding my breath, even though I knew what was going to happen. And the end, oh the end just gave me goosebumps of joy (is that a thing?!), even if she was cured in a way we may not exactly understand. When the credits came on, everyone stood and clapped and you could cut the emotional intensity in the air with a knife.
As we made our way out we found the Beam family and introduced ourselves to the youngest daughter, aka miss diva, Adelynn. She was so full of life and not shy at all to say the least! When we told her that we live with the same condition as Anna had, she quickly ran over to her parents and introduced us. Both were incredibly kind, listening to our stories and taking the time to talk with us. Christy even signed our books that we had stuffed in our TPN backpacks just in case!
It started to get a little crazy as the family was being pulled in all directions for photos and meet and greets, so Laura and I headed out, smiling ear to ear. Next stop, the after party! Of course we didn't really know where we were going so we had to google search the address and ended up following some of the others leaving the theater. Luckily it was only a couple blocks away, a hip nightclub called Le Jardin. Outside, the streets were lined with large black SUVs, the drivers standing watch and the entrance blocked with bodyguards. Wow, this really is how it happens! We pulled out our official invite and walked through the doors into what felt like a movie, or more like a popular music video. There was a slick looking open bar surrounded by indoor palm trees, areas with cozy lounge seats and couches, fireplaces, a DJ dancing to her own beats, and beautiful people serving finger snacks and pretty drinks. Eventually we found a place to sit but that didn't last long because it was more interesting to walk around and see who we might talk to. Adelynn, the youngest Beam sister, seemed like the life of the party. She found us and immediately began taking selfies so we could be friends on Instagram. We had the chance to chat with Anna and her sister Abbie as well. They led us over to the real Dr. Nurko, (as opposed to the actor who plays him) and he seemed quite fascinated by our story and the fact that we made it this far to attend the premiere. He was incredibly kind and confessed to us he honestly could not explain what happened to Anna...unless somehow she possibly hit her head just in the right way to stimulate her vagus nerve to work again. He also joked that too bad we weren't younger or he, as a pediatrician, would love to work with us! When I meet any children with GP in the Boston area I will recommend they go and see him for his compassion alone.
It was getting close to midnight and Laura and I were running on pure adrenaline, and of course not to mention the TPN pumping through our veins. I was still determined to meet Jennifer Garner so we sort of huddled around where she was sitting, waiting for the right opportunity. Just as she was getting ready to head out I squeezed my way through her pack and tapped her on the shoulder. When she glanced back I nearly lost my nerve but then somehow managed to say, all while shaking on the inside, "Hi, my name is Stephanie and this is my friend Laura. We have the same disorder that Anna had and just wanted to thank you for doing such a great job in the movie!". Her jaw dropped and her eyes lit up as she turned around to meet us. She was proud to say and remember the term "chronic intestinal pseudo obstruction," expressing it was absolutely one of the worst things someone could have and she was so sorry that we had to live with it. She went on to explain how they are working hard to put together a fundraiser at Boston Children's with the help of the Beam family and Dr. Nurko, to help raise awareness and funds for dysmotility disorders. Amazing!!! Then, a moment I will never forget, Jennifer Garner asked if she could get a photo with us! Hmm, let me think about that for a moment...uh yes!
So we got our photo and she wished us the best of luck with everything. Our night was complete and Laura and I were ready to hop in an Uber to make the short 3 blocks back to the apartment as effortless as possible. I'm not sure if either of us really slept that night but the entire trip sure felt like a dream. We packed the next morning and said our good-byes at the airport, knowing it wouldn't be the last. Within a couple weeks of returning home she wrote to the local newspapers and our story was published in both her town and in the Chicago Tribune which you can read here. We hope to meet again this summer when she and her husband Pat plan to make a trip to Seattle.
A huge thanks to Laura, her friends and her family who all helped make this happen!