Friday, May 9, 2014

If it were you?

If your child passed away at night from complications due to Type 1 Diabetes, how would you want the Diabetes Online Community to react?

Would you want them to ignore it?  Pretend it never happened?  Use denial to squash away the memory of your beloved?

Would you want your child’s face plastered over everyone’s wall declaring the monster that T1D is? 

Would you want warnings, and scoldings, and “I told you so’s” like billboards on a highway with your precious as the poster child?

Would you want anger attached?  Sarcasm attached?  Indifference?  Would you want judging and speculation? 

What would you want?

The way the online community commemorated and embraced Ryan’s passing was a beautiful thing.  It wreaks me to think that was only because he had cancer.  What if my husband had passed away from Type 1 Diabetes?  Would the fear of it happening in your own lives have changed your reaction?  Would the support have filtered away into the fog of fear?

Would the fear have made you angry?  Would it have made you furious that people were embracing a soul they never met?  Would you have had to take a break from Facebook?

I don’t know the answer to any of this.  I don’t think any of us know how we'll react to anything until we are face to face with it.

What I do know is a child is no longer with us.

A family is hurting.

Real people have faced their worst nightmare and are seeing this nightmare float around online. 

I just hope that if we post about it, we would post as if the mother were reading it.  Post as if the father had eyes on what we write.

Post with care.  And love.

Because even though we never met this child, she is one of our own.  That is what “community” is all about.

What if it were your child?

What would you want?

Do that.


  1. Beautiful and wise worlds, Meri - As always - And I agree with them 1000%
    Thank you so much for writing them!
    If it were my child I would want her life and her light to be remembered with love and compassion - And a piece of my heart would be missing forever and she'd be with me everyday..
    If it were my sister I would want her name to be known and remembered for her beautiful spirit in all its many facets and I'd miss her terribly. There wouldn't be day that went by that I wouldn't feel that loss - I'd think of her every time I saw the ocean or the sun setting over the ocean, and when certain songs play - it would be her voice I'd hear. I'd see her own face staring back at me when I looked in the mirror and over the years I'd begin to understand her triumphs and struggles more than I ever thought possible.
    No name calling, no pointing fingers - I understand what that's like because I've walked in those very shoes - And it causes nothing but pain and heartache to the family.
    We need to love and support one another through all good and the bad times - And all the moments in between.
    Love you.
    Kelly K

  2. Meri, Thanks for your blog about community. People matter more than anything else. We are more "socially connected" today but less social. We have facebook friends but fewer "in your face, real friends." Mike A.

    Because even though we never met this child, she is one of our own. That is what “community” is all about.

    What if it were your child?

    What would you want?

    Do that.

  3. Here's my column in dLife about my son, Jesse, and how the online diabetes community handles it.

  4. I would want people to respect what I want said.
    I would NOT want people to take my child's loss and hold it up as their own problem (Oh -- look at me! my child might die -- see? see?"
    I would NOT want my child's memory used for any fundraising or organization or mission until I said it was okay
    I WOULD wnat exactly what this young woman's camp friends did when they created their tribute video. It's beautiful -- happy, classy, touching, personal.
    I would not want people guessing why or how my child passed away.
    I would appreciate a simple "We care' or prayers or "thinking of."

    I don't think we have an obligation to be silent in any way. But I DO think we have a moral obligation to respect the family and their needs -- and if we don't know those yet, to treat lightly.

  5. Occasionally, I've been told that I don't have to say everything I'm thinking the very moment I'm thinking it. If I give it some time, I may reconsider what I want to say, or how I want to say it. That, and as you say, asking "What would you want?", helps us temper things into supportive gestures and steely resolve.

    Thanks for the reminder.

  6. What would I do? What would I want? I honestly don't know -- I've never lost anyone really close to me, other than a couple of grandparents - everyone could agree - whose time had come and whose end to suffering was somewhat welcome.

    I never knew Ryan, but through your words and other's reactions, I grew to know and love him. I frequently checked social media to see what was happening, and remember exactly where I was, why I was there. and what I was doing when read the news. He definitely had a crowd following and cheering for him.

    Personally, I'd probably go into seclusion, keeping the news, and myself, hidden. I can be quite private in emotional, personal situations. I wouldn't want the attention. BUT -- a part of me thinks that it would be really meaningful and appreciative if it came.

    It's hard to know what I would want. But I know what Nicole's family wants, and I can and will certainly offer what I can.

  7. For this very reason I stay away from those posts. I think #singfornicole is a wonderful way to honor her memory... I really hope OD comes through for her sister. My heart breaks for them(and the families of all who have been lost). I couldn't imagine what I would want if that were my child, because I can't possibly imagine that kind of loss. Well said, my friend.

  8. Thank you Meri. I needed this. My D-mama passed away about 10 months ago and I have been dreading Mother's Day. But I am going to follow your lead and stop feeling sorry for myself and celebrate what a great momma she is to me! This is beautiful!


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