Monday, March 31, 2014

"Butterfly Girl" movie

I don’t know the right way to start a movie review, but I will say this. I just watched a documentary and I liked it. That’s not normal for me. :)

This past weekend I had a special opportunity to watch and review the movie “Butterfly Girl,” a documentary about Abigail Evans, an 18 year old girl living with Recessive Dystrophic Epidermolysis Bullosa. It was amazingly well done. The music was written and performed by her father (really good… kind of a folk rocky sound), and the cinematography was beautiful.

Abbie, at the time of filming, was 18 years old, and like most teenagers, ready for some independence. The whole film, while showing her struggles with EB, focused more on who she was and her dreams. I liked that. I think so much of the time, people tend to look at what they can’t do or what they won’t accomplish, rather than chasing their dreams. EB kids are limited in so many ways, but this movie focused on all the things Abbie could do and wanted to do, rather than her limitations. It gave me hope as an EB mom that Jonah will be able to do more than I ever expected. There were a couple of times in the movie that Abbie sat on a rock and on a metal deck railing, bandage free, and Matt and I were astonished. Those things may seem little to people who don’t live with EB every day, but it really is huge when your skin is so very fragile.

Of course I watched the movie as an EB parent, so watching Abbie with her parents and their special dynamic really moved me. Abbie’s dad is kind of rock-n-roll and “tough love” and her mom is super compassionate, makes her smoothies, and stresses out when she can’t be there taking care of her. In Abbie’s words, it is “the best of both worlds.” While her parents lovingly meet her every need, they also encourage her to be adventurous and to go out on her own. They are so supportive when she says she wants to go to college and go to California (from TX) on her own to be part of a research study. As she’s about to leave for CA, her mom is visibly worried, knowing this is the first time Abbie will be on her own for something medical like this. And that she’ll be a plane ride away. Although they both act tough for her, I could see in their eyes, as she walked away from them at the airport, exactly what I would feel if Jonah were walking away from me for the first time.

When you have been your child’s everything since the day they were born - when you’ve fed them, bathed them, tended their wounds, done their dressings, helped them go to the bathroom, changed out their g-tube, cried with them through their hardest and most private moments – how do you start to let go? Knowing it’s best but longing for them to need you like they always have. Wanting to protect them and do everything in your power to keep them safe, but letting them go, because you know that life is more about their happiness than their safety.

I really encourage you to see this movie and if it comes to your area, it is more than worth your time. Abbie is amazing and her attitude is so positive and upbeat. I pray for Jonah, all the time, that he will not become angry and cynical, but that he will love life and live it to the fullest. Abbie gave me hope.

Matt and I have always said that, if Jonah wants to do or try something, we will do everything we can to empower him and help him do it. And then he can weigh the risks and decide if it’s worth it (maybe no tackle football though). :) I’m hopeful that he can have a life full of adventures, dreams fulfilled, and happiness in who God made him to be… whether he has 20 years or 80, I pray he lives them with hope.

Matt and I will be going to Durham this Friday for the Full Frame Documentary Film Festival, where "Butterfly Girl" will be showing. There will be a Q&A with the film makers afterward, and we would love for any of you, who can, to join us. It's worth taking your lunch break to come see. I promise.

Here are the details:
Friday, April 4 at 1:30pm
Carolina Theatre – Cinema 1
309 West Morgan Street
Durham, NC 27701
For ticket information, click here:

Feel free to email me if you decide to come. Would love to come say hi.

To learn more about Butterfly Girl, visit:

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