(Video link here.) Today in our inbox we found an email from Elizabeth Aquino, a long-time reader and an acute, avid commenter. She wrote to tell us of a video project she collaborated in making:

I am the parent of a child with severe disabilities, a job that calls for near constant improvisation. I asked parents of children with disabilities — some that I knew and most that I don’t know! — what they might have told themselves on the day their child was diagnosed and to write that down on a poster and pose with it for a photo. They sent me their photos, and we put them together in what, I think is an example of an improvised life — 

It blew us away: big honest words for an incredibly difficult thing. Aquino’s parents’ messages apply to the many rough diagnoses and challenges that invariably strike us all, while providing insight into the valiant lives that people live improvise daily. Witness this series of posters:

This is going to hurt

Your whole world will change in a way you could never imagine

Nothing you’ve ever done will prepare you for this

Let it

Don’t fight the change

It’s stronger than you

The journey is the reward

Ask for help


Thank you Elizabeth Aquino!

Related posts: pianist derek paravacini: ‘good comes out of bad’
chuck close’s ‘note to self’ (eight perfect rules for living)
when ‘disaster’ gets interesting
carpenter sentayehu teshale re-envisions ‘disability’
‘nothing is impossible’ defies ‘disability’
signmark and the very loud message of deaf rap

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7 replies on “reader’s improv: the extreme parenting video project

  1. You are such a wonder curator, Sally!! I’m happy I watched this before i even got out of bed this morning…while I don’t have kids, it will remind ME that it’s all going to be OK! Wise words parents. Wise words!

  2. Having been there, I would add:

    The heartbreak of the parents is healed by the bravery of the children.

  3. Thanks for this touching and moving video. It is clear & honest. Loved it!

  4. Thank you so much for sharing our video. And thank you to all those who commented — I will pass along your encouragement! All the best —

  5. I’m a sibling from the 50s. Thank goodness the world has changed, and a video like this is being shared. Thank goodness the world is so deliciously open, because the room for the differently normal is very big now.

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