In my recent post (Hope Snorts) I wrote about how I’m coming to terms with all of my son Liam’s possible and probably futures including the real possibility of losing him in my own life time.  It was a heavy post that got a lot of traffic but very few comments.  I wrote the post as an effort to process my own journey, but what inspired me to actually publish it was both a podcast I listened to the day before and a rather cruel Facebook discussion about Emily Rapp’s recent loss of her son Ronan.

Then yesterday, I read this post that introduced a blogger, Anna, and Anna’s own post about how even after tremendous loss she’s still entirely human.  I loved how the author Glennon  described the suffering she was taking on herself in support of her friend Anna as a blessing and that to suffer with Anna was to willingly take on her pain. I loved Glennon’s definition of the word compassion and honesty that to truly support a friend you must suffer with them in their sorrows.

Anna was like many mom-bloggers until her son died suddenly in a freak flood.  When I first read Anna’s own blog An Inch of Gray  several months ago, I cried for about two hours straight.  I needed to cry, I’d been holding back my tears for so long.  I actually wrote to Anna a long time ago to  her thank her for sharing her story so vividly because it allowed me to cry.  Too often, crying by proxy is the only way I ever allow myself to cry.

I’ve been conditioned in life to keep my tears to myself, to not make others uncomfortable.  I grew up believing it is the polite thing to suffer in silence.  I’ve learned from the people who’ve read my book and write to me that my suffering out loud helps them escape their sense of alienation.  I love that more and more mothers like Emily Rapp and Anna are refusing to suffer silently.  I love that I’m beginning to feel like there are more of us out there willing to tell the truth.

In telling my truth so openly, I frequently fall into the gulf between pity and empathy.  When I tell people Liam has had twelve heart surgeries or that he has half a heart, they treat me so strangely.  They cannot offer me empathy (really understanding what it’s like to live this life), so I mostly get pity.  These condolence-like responses make me feel as if my entire life is seen as a disfigurement to be feared.  I hate that. My life is not ugly.  Yes my truth is difficult, but my life is beautiful and so is Liam’s.  Everyone’s life is beautiful.

When people offer me pity, it makes me feel like both my person, my family, and all people like us are dismissed as pitiable or pathetic, when, to the contrary, I’m entirely empowered and capable.  I have a perspective and a depth that I would not have, had I not suffered not only my own fears, but my compassion for friends who’ve lost their children.  Moreover, I’ve felt that compassion for both of my children and my husband Jim, when I suffer with them.  I suffer Liam’s own fears and the ravaging of his body.  I suffer Moira’s anxiety and constant need to know her place in a chaotic and uncertain world.  I have compassion for my children. Maybe, for Jim, it is more empathy than compassion because we are both the parents to these children and we share a compassion for them.

I listened to another podcast today.  This one was an interview of my hero Emily Rapp. I warn you if you struggled with my Hope Snorts post, you will surely suffer to listen to this.  If you do listen yours will be a pure suffering, the transcendent suffering of compassion wherein the value of human dignity has never been more brilliant or honest.  So if you can bear the burden of that light and tap your deepest compassion, I urge you to listen.   For all those people who read my blog and suffer in my depths, I thank you for your continuing compassion.  It makes life more meaningful and rich for all of us.


  1. Amanda-I am struggling through your most recent posts. But this current post gave me some real perspective. I think I was/am conditioned to suffer in silence. I was a caretaker before he was born…and while that role serves me well with my son, it doesn’t do much to care for myself. I am reminded when he was just born and we were really in the thick of things. I would launch into what was going on and some of the more difficult details. I felt the response I always got was, “But he’s going to be ok, right?” And I would put on a positive face and give some optimistic response. When inside I would be screaming how the heck do I know and shouldn’t you be comforting ME and yet what you want is reassurance from me that the world you know is still a happy little place. I truly appreciate your honesty in your writing. Thank you!

  2. Amanda thanks so much for your work in this very important area.Keep up the good work!Holly,Keep your positive attitude as much as possible.There are many of us thar have suffered these problems and we are with you all the way.Never,never give up.Ken and Jo catoe

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