First, stop what you're doing and carve out some time to go support this movie!! Supporting this movie, brings awareness to this horrible disease. It also shows Hollywood that this community needs to have a voice in the world.
Real life CF: Before we could walk into the theater, we had to sit in the car, mix her IV meds and get them started so they could run during the movie!! She also had to swallow five pills during the movie and then flush and hep lock her central line in the dark halfway through the movie!! This is the reality of her life!! She was also dressed in purple (Color of CF), and wore a face mask to protect her!
Ok... let's dive in:
As the movie began it scanned Stella's hospital room, on her desk was a cup of pencils...the same Hobby Lobby pencils are currently sitting on Emma's desk in a cup...my tears began at that moment. They continued off and on throughout the movie. It was hard to not break into full ugly cry mode a few times. Abby cried towards the end...and Emma...She cried a few times, but the ending really upset her.
Director, Justin Baldoni did a phenomenal job playing close attention to the smallest details. Details that would be overlooked by most people... things like the sandals next to the bed (Emma always has a pair next to her bed), the pills: there is a shot of Stella adding her pills to chocolate pudding...Emma has actually tried that hahaha...but the pills were actual medications that Emma takes!!! She immediately noticed and commented on it. The not so very cute but comfortable clothing, constant messy hair, the clubbed fingers, the Pulmozyme on the med cart, vest treatments, the dark discoloring under Will's eyes, for anyone who has seen Emma when she is sick, you immediately noticed her pale skin and dark under eyes...they captured this beautifully!! The gtubes, ports, hospital bracelets, and Barb!!! Barb's love for the kids is so apparent but she is stern for their safety and her heart. We have met a handful of nurses like Barb...most recently, at Texas Children's one specifically comes to mind. She has lost many CFer's that she loved so dearly, even her own family member...she loves these kiddos with everything in her, but she also is on them to make sure they do what they should and pushes them to be the best they can!! So in our world, our Barb, is Cami! Aaron is another current nurse we love... in the past it's been Canole (aka Nicole), Bri, Amy, Richard and James.
Emma pointed out that she appreciated that the staff dressed in gowns when they came in the room. She also loved Stella's decorations, since decorating her room is the first thing we do when she is admitted. Some of the room decorations, Emma actually has!! Emma also loved that it showed Stella Facetiming friends and the other CFers. Facetime is Emma's lifeline while in the hospital. She has talked to many CF friends via this amazing technology and couldn't imagine hospital life without it! Emma also loved that they were always wearing face masks!! She hates wearing them, but knows it's a requirement!
I asked Emma what she thought of the movie...so out of the mouth of a 12 year old CF warrior...here you go:
"It was sad but good.
All the little details
made it feel real.
I would recommend it for
other CFers my age and up."
- Emma
The movie does talk about death a lot...I have made it point to be very honest with Emma. However, I have also made sure to be careful and age appropriate when it comes to this topic. Unfortunately, Cystic Fibrosis, doesn't care how old or young you are. We had had to say goodbye to so many young friends. My hardest conversations as a mom, has been looking my sweet girl, in her big hazel eyes, and telling her we lost another friend. Emma does have a wonderful outlook on this and said:
"The talk about death didn't bother me.
It was things I already knew
so it didn't really phase me."
- Emma
Bottom line the movie was done very well... it does have some scenes that are very "Hollywood"...like the dinner and the pool...but overall it was great. One thing about the pool scene...this was a very intimate scene...strange to say that, even though they never touched... but the thing that stood out what that they finally felt comfortable with showing their scars to one another. Emma is very uncomfortable with anyone seeing her port, gtube, or any scars... this showed her that her scars are beautiful... and that made me smile and cry at the same time.
This movie also made me realize how special the people are who makes a decision to love someone with a chronic, terminal illness. See, we were chosen to be her parents, we are blessed and beyond lucky to have her in our lives. But to the man who makes a choice to love and cherish her in spite of her illness. The man who steps up and says, "I will love you regardless." The man that says "we are in this together"..That man, I have been praying for since before she was born...and that man, will he a very special individual who will make all the difference in her life.
The CF fight is hard...it's exhausting and heart wrenching. But life is hard y'all... and we are not promised tomorrow. So let's live each day as if it may be our last...love one another, hug your friends and loved ones. Tell people you love them and for the love of all that is holy...LIVE!!! Stop making excuses...time is our worst enemy...Do more than just exist!! If a 12 year old Cystic Fibrosis Warrior can grasp that...so can you...
"Everyone dies.
There's nothing
we can do about it.
You're gonna die,
you can die tomorrow or in awhile.
Anything can happen.
So live your life like you're dying.
Just go out an do stuff,
don't just lay in your
bed watching sad videos.
DO SOMETHING!"
Emma, age 12
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