I've always been a bit protective about my three littles being in video. I can count on my hand how many times since Aaron came to us that we have posted a video of them on this blog or on Facebook. I guard their privacy carefully.
But... sometimes... you have to break your own rules.
My niece, Meagan, graduated a few years ago with a degree in film and video. She does documentary filmmaking and lives in New York City. She's gifted. She has created quite a number of amazing documentaries over the years and is fantastic at capturing moments in time. I have a daughter with a condition that baffles doctors, and capturing some of her seizures on film might help them figure out how to help her.
She agreed to come follow our little whirling dervish around last Thanksgiving to provide us with some footage we can use for medical purposes. She showed up with a massive camera - it weighed almost as much as Mary!! For the camera geeks out there, it was an Arri Alexa Mini with a 30-76 Angenieux zoom lens. For the non-geeks, it's the kind of camera they use to make major motion pictures.
Meagan spent the day following Mary around. She was a bit worried she would not get enough good footage (seizures) but I didn't have that same fear. Mary rarely has 'good' days so I figured she would 'perform' well. In reality - she had a rather awful day. We had to rescue her three times that day. It made for great filming. It allowed her to capture Mary in all her different seizure types and how the meds affect her. It provided us with a lot of good footage we can use for medical visits.
But Meagan didn't just take film of Mary to give to us. She also put together a short documentary. It took her 3 months to put it together.
Putting Mary's seizures out in public is not something I take lightly. I never want to post something that will embarrass her or hurt her down the road. Some of Mary's seizures are hard to watch and some I would never post. Ever.
But I trusted my niece and knew she would do an amazing job.
I was not wrong. I cried when I watched it. It is precious. So tastefully done.
Putting Mary's seizures out in public is not something I take lightly. I never want to post something that will embarrass her or hurt her down the road. Some of Mary's seizures are hard to watch and some I would never post. Ever.
But I trusted my niece and knew she would do an amazing job.
I was not wrong. I cried when I watched it. It is precious. So tastefully done.
It captures some of Mary's struggle but also captures her personality and love for life.
It is a great film about the toughest little girl I know who faces down the beast every single day of her life and yet continues to smile and find joy in the midst.
I'm sharing it here for you to watch.
I've been told by someone who has seen it that I need to give a tissue alert.
So be warned.
Mary Quite Contrary - A Story About Epilepsy and Doose Syndrome
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P.S. - To see more of Meagan's work: www.meaganarnold.myportfolio.com
















