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Friday, April 17, 2020

Social Distancing John and Aaron Style


What do you do when you are Aaron and John and school is closed and you can't see your friends and you are stuck at home for weeks and weeks and weeks on end...


You watch Papa till up the garden....

You dream big dreams...

You wait for your turn to drive the tractor....


You do math with Papa because Mama refuses to let you lay around all day...

Ugh!


You discover that the desk Granddad got you a few months before works perfect for homeschooling...


You homeschool because of Mama...


You oversee Papa at work on his projects....



You get put to work ….



and more work....


Because Papa is having a blast planting trees and grapevines and getting the ground ready for a garden and mulching and weeding and building sheds and doing all kinds of other projects to keep bored boys occupied...

You enjoy watching movies with little sister...


You ride bikes...

Stay up later than normal...

Read books ...

Take walks...

Dig in the dirt...

Build Legos ...

Play on Xbox One...

Help Mama cook...

Help Mama clean...

Eat and eat and eat Mama's food...

Jump on the trampoline...

Jump on your brother on the trampoline...

Land smack on your brother's knee while jumping on the trampoline...

Break your arm on your brother's  VERY SORE knee while jumping on the trampoline!!!!




Yes. That really happened.

One sore knee and one broken arm all in one hard collision!!

When your son has arthrogryposis and he breaks his arm... showing up at the local ER is not really the best option. 

He needs HIS doctors...

He needs their eyes on the break...

But in the middle of social distancing and a pandemic....

The very LAST thing we want to do is drive 6 hours to see his doctors at Shriners in Philly....

So you call... His doctors... who are the best in the world at what they do... 

And they do what is rare and impossible in the normal world of insurance-run hospitals...

They call in an X-Ray prescription to an outpatient clinic HERE that happens to be empty of people when we arrive.

They instruct us to take pictures of the X-rays and e-mail them up there...

So they can read them... and decide...

And then... after reading them... they personally call a local colleague, who happens to be a close friend of theirs, who happens to be an arm and hand surgeon, and they work out the details for our kamikaze, trampoline slamming, arm-breaking son to get treated by that close friend of theirs.

And when we arrive at his office... it is EMPTY of people...

And they cast his arm exactly like the doctors at Shriners instructed and even take pictures to send...

And we go on our merry way... 

Without traveling...

Without being in contact with the masses...

With a long, miserable cast and a rather exhausted boy but a relieved Mama and Papa!

No surgery. No hospital. God is good.

Except for broken arms and sore knees....

Social distancing has not been that hard for the little boys.

They see their friends on Zoom....

They have youth group on Zoom...

They attend chapel on Zoom...

They do drama practice on Zoom....

They do speech therapy on Zoom...

They do classes on Zoom...

They visit with family members on Zoom....

They Zoom and Zoom and Zoom...

We didn't even know what Zoom was 6 weeks ago!!

What a Zooming new world we live in! 



We are keeping them busy...

Working on outside projects...

Spending quality family time together...

Trying to keep them from killing each other...

Or breaking their arms...

And that is social distancing John and Aaron style....

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P.S. - In case you missed seeing Mary's YouTube video... 







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