Monday, April 13, 2020

Be Warned - Tissue Alert!

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.


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



22 comments:

  1. Thank you for sharing Julia...she amazing and so is her family. Praying God continues to equip you and lead you 💕

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  2. Wow! What a gift - your girl, your niece, your family! Thank you for sharing her story and opening our eyes wider to your reality.

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  3. My heart was in my throat, my tears, then my smile. My gratitude and prayers for the Nalle family. Doing the hard, hard Jesus work. This was beautifully done and we know more how to pray for your family and her healing.

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  4. I watched the video and my heart wrenched. It's too hard to see an innocent child. But she is that type who uses every single good moment in her life. Because she has you, guys. She has a family where she is precious for you, where she's the only little girl, not only one of the abandoned children. She has famiy ties to hold her. Thank you for letting us in!

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  5. Thank you for sharing. Her resiliency is amazing! God bless you little one. Stay strong.

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  6. Mary has been truly blessed having you and Rob as her parents. The tissue alert was definitely needed! I knew Mary had Epilepsy but had no clue as to the extent in comparison to others I've known who have it. You are an amazing family and I know that God has a special plan for your lives. Bless you all!!!

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  7. Beautiful girl... The video brought tears to my eyes.It brought back memories I've tried to bury over the years. My child (10) also has Doose.Luckily we were able to find a medication that is working.I hope you are eventually able to find something thats works for her as well.. I love her spirit...hugs❤

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  8. Gave me chills. Your entire family is so beautiful - - so devoted.

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  9. Excellent mini-doc. Your niece is very talented. Thank you for posting this. I know someone who might be helped by seeing this. xoxoxox from New Mexico.

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  10. Mary you are so strong and beautiful! I can't imagine the constant feeling of stress for you guys. You are all in my prayers! (Wish we lived closer so I could help.) Thank you for loving her and serving her!

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  11. So beautifully done. Oh how I wish Mary's world could be different. I am so grateful you had the courage to go and adopt her. I cannot imagine her life in an orphanage. Sending many prayers and hugs your way.

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  12. And she continues to smile. Life as you knew it, changed when Mary entered your lives. Her perseverance is awe inspiring.....but so is yours. God’s hand guided you to her.

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  13. Julia and Rob, I think you are generous, and sharing a wonderful faith witness, with this video. Meaghan did such a great job with it. I pray with others that God will continue to bless Mary, you, John, Aaron, Elijah, Ben, and all your family in the love you share.

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  14. Absolutely beautiful, very moving film. Thank you so much for sharing it with us. Mary is a shining star, in more ways than one.

    Susan in Kentucky

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  15. Thank you for posting, and tell your niece that she is an excellent documentary filmmaker. I've been praying for your family and will continue to do so.

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  16. This is such thoughtful and insightful film which really achieves its goal of giving the viewer an insight into the struggles and joys of Mary's life. Meaghan did a wonderful job! I was so touched watching this in England this morning. God bless you all - I so hope that medical innovation will develop medication which works for Mary. In the meantime it is so encouraging that she continues to find joy and share her joy :) Katie

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  17. Thank you for sharing this, Julie.

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  18. Oh Julia, what a wonderful and impressive video, so happy, so sad.
    I will keep praying.

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  19. Bless you all for being strong enough to say yes! Although, I can't imagine how one would say no to that sweet, precious little girl. I remember being in elementary school & there was an older boy who would occasionally have seizures in the hallway. It was so frightening then, not understanding what was happening, and when I hear about seizures, part of me still gets that feeling of not wanting to see. Videos such as this one make me (and I'm sure I'm not alone) realize each time that I see one, that although the seizure is scary and sad and awful, it's just a strong, brave, beautiful little girl fighting the good fight! So, thank you for sharing! Love to all of you!

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  20. My daughter has had many seizures so I understand the heartbreak.
    I'm praying the Lord shows your family the path to full healing.
    Thank you for sharing the video and thank you to your niece.
    Beautiful video and beautiful girl!

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Loving words from kind people make our hearts glad!