In this new age of Zoom, those parents who are working from home with their children underfoot find that their colleagues are getting a private glimpse into their family. For parents with children affected by a serious illness, this can mean colleagues seeing something new and at first, perhaps, unsettling. Courageous parent Myra wants her colleagues to feel comfortable seeing her daughter Havi in the frame – Havi is Myra’s beautiful superpower – and she sent them this message. She shares it now with CPN in the event other parents have occasion to send a similar invitation to their colleagues, friends, family.
I am writing to share a request with you all. I appreciate you reading this email with an open heart.
As you all know, our oldest daughter, Havi, was diagnosed with a terminal illness last December. We will lose her in the upcoming months. We are shattered and our world is turned upside down in ways that are hard to imagine.
Many of you have seen her join recent Zoom calls.
It is true: She has lost the ability to do almost everything. She is blind, she cannot speak, she cannot move, and this cruel disease even makes it very difficult for her to smile. Despite all of this, she is filled with the most love and grace and beauty I’ve ever known. And she can feel energy and love in a big way.
I ask that you acknowledge her presence, talk to her, maybe tell her she is beautiful and that you are happy to see her.
I recognize that it’s hard to know what to say when something feels so sad, so unnatural, and so cruel but please don’t pretend she isn’t there.
I ask for your support in seeing that a precious and beautiful girl is joining her mom for a day of work.
And I’ll ask you to see her long after she is no longer physically here with us. I hope none of you is faced with this type of tragedy: but I promise that I will extend the same love and compassion to you and your family.