Friday, May 15, 2015


Since Zachary died, people often tell me -- 

I can't even imagine.

It's validating to hear my very real nightmare acknowledged.  I appreciate the sentiment because it is absolutely the truth.  One simply cannot know what it is to have experienced the tragic and traumatic losses I have endured, cannot understand their impact on every facet of life, without having lived them.  And, declaring inability to imagine is much preferred to those who have the audacity to claim they can understand my loss and my grief, when they actually have no clue.  Believe me, that has happened too. 

I believe the basic intent behind the statement is most often to comfort and support me..., and intent is huge in the context of profound loss and, so often, vacuous words.  Yet, I often hear something else in those words, emanating from the depths of the subconscious where ego and fear and self-preservation exist.  Sometimes I recognize, in a flash, that the statement is not about me and my dead children at all, but rather --

I am so glad it wasn't me, wasn't two of my children.  I don't even want to think about it.   

I suppose it's human nature.  We never really entertain the idea that our own children might die before us.  We think those kinds of things happen to other people, not to us.  We stick our fingers in our ears, close our eyes and sing "la, la, la, la, la" to drown out the frightening possibility.  We want to hold on to the belief that our family is safe.  We want to believe our planning, our acts of prevention and hyper-protectionism will do the trick.  Many of us pray for the health and safety of our children - prayers, we have rationalized, God readily hears and answers.     

We turn off or ignore the television news because there are too many innocent children being gunned down, in neighborhoods usually far from our own.  We prefer sending in our money to a non-profit or aid organization rather than coming face to face with a child's suffering or death.  We change the radiothon station when the bereaved parents come on to talk about their child who fought and "lost" his battle with cancer.  The thought of a cherished son, dying in a hospital bed, in the context of modern treatments and a conscientious loving family, is intolerable for us.  We don't want to acknowledge it could have been us.  We retreat back to our own orderly lives, where things are humming along sufficiently well, where plans generally materialize, where children are alive and well. 
In his memoir The Book of My Lives, which is brilliant by the way, author Aleksandar Hemon remembers interacting with people when his nine month-old daughter, Isabel, was suffering with a rare brain tumor, from which she ultimately died:

When people who didn't know about Isabel's illness asked me what was new, and I'd tell them, I'd witness their rapidly receding to the distant horizon of their own lives, where entirely different things mattered.  After I told my tax accountant that Isabel was gravely ill, he said: "But you look good, and that's the most important thing!"

So, what if you are unable to ignore or suppress the truth about child death?  What if what cannot be imagined is, in reality, your life?  What if you have a terminally ill, or dead, child?  What if, against all odds, you have two, or three or more, dead children?  What if your family's story of child death is so horrific that no one wants to acknowledge it or to ever be reminded of it? 

You walk around wearing a mask, politely avoiding the topic no one cares to talk about, but which presses on your soul incessantly: your gravely ill or dead child(ren), your grief.  When you interact with people, you stick with topics they are comfortable with.  You keep your miserable story, your ugly emotions, hidden so that no one has to be reminded that children die, that your child(ren) died.  It is exhausting work, an exhausting act to keep up, especially as you adapt to it.  I believe it is one of the most humiliating and isolating things about living the life of a bereaved parent.  Not only does your child(ren)'s memory fade into the oblivion of absence and other peoples' discomfort and fear, the grief you carry becomes conveniently and almost entirely, invisible.  For the sake of preserving the mirage of life's orderliness for people not directly affected by unimaginable tragedy and grief. 


B left yesterday morning for a four-day work trip.  He will run into people he sees only once a year, usually at this conference.  He decided not to attend last year in light of Zachary's death and so this will be the first time he has seen many of these colleagues since before Zachary was part of our lives.  Spouses are invited (although I decided not to attend, again) and so, for the social aspects of the trip, there will be plenty of cocktail-style chatting about life and family, in addition to work. 

Imagine the conversation starters. 

How are the kids?  Remind me, Brandon, how many children do you and your wife have? 

We didn't see you last year.  What's new?

Where is Gretchen?

As he was packing to leave, B told me he was anxious about the trip, about his ability to float around the light conversations of the weekend, with Zachary's death and his grief as constant companions.  And, knowing the way people tend to react, getting through it without slinking into the depression of disillusionment.  It is precisely the reason I am not attending.  

B is carrying Zachary's photo, his comb and his ear muffs (used to drown out the sound of the oscillating ventilator when he was battling the infection), in his pockets, like he does every day.  No doubt, he will have plenty of opportunities to bring Zachary and our new reality into conversation.  There will be no way around it.  I wonder if someone, just one person, will dare step out of their own orderly reality, for just a few minutes, and imagine a sliver of his. 


  1. "I wonder if someone, just one person, will dare step out of their own orderly reality, for just a few minutes, and imagine a sliver of his."

    I believe you know the answer to that one. Unless someone else has had a child(ren) die, the subject is just too horrific for them to even try to fathom, so even if there is acknowledgment, the subject will quickly be changed or drowned out by the other person. Until we joined this horrible club, we were that other person and were too frightened to imagine that, indeed, our children can and do die. We are no longer blessed with the gift of "knowing" we are special, and that something so unimaginable can happen to us.

    I have learned to forgive or ignore most of the apathy and lack of empathy from "that" person. I try to remember what it was like to be special too when my child dying was not a reality, and my life was humming along in ignorant bliss. I try to remember "that" guy, but that was not reality. That was a grand illusion that when unmasked showed me that even the great and powerful (note the sarcasm) Steven was not immune to truly the most horrific thing any parent can ever experience, and is/was powerless to stop it.

    Lastly, there is a quote that I use to help others understand how painful and how much different the death of your child(ren) is from any other death.

    “A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. There is no word for a parent who loses a child. That’s how awful the loss is.”

    ― Jay Neugeboren, An Orphan's Tale

    1. Thanks, Steven. It is amazing to me that we can witness someone else's tragedy closely, and still believe we are safe from something similar. For me, it is especially difficult when the people who are close to me (who knew Zachary and his story, who know what happened to my two children) talk with certainty, or faith, about things I cannot fathom. I want to shake them, ask them how and why they think they are immune, ask them if they remember.

      One thing that was special for me was a woman who told me she could no longer go to church after Zachary died. She was not particularly close with us, but she had prayed, nonstop, for him when he was sick. She couldn't accept that he died amidst all those prayers. That she was impacted enough by Zachary's life and death, that her faith faltered, meant something to me. (I suppose I should be discouraged for her, that her faith faltered, but really I was just humbled that she truly put herself in our shoes and felt some of the deep disillusionment that we feel every second of every day).

  2. "Not only does your child(ren)'s memory fade into the oblivion of absence and other peoples' discomfort and fear, the grief you carry becomes conveniently and almost entirely, invisible. For the sake of preserving the mirage of life's orderliness for people not directly affected by unimaginable tragedy and grief."

    I have tried to explain this feeling, but I can't do it half as well as you did. I am still shocked and mad when people cheerfully ask me 'what's new' or 'how are you?' and it's been almost a year and a half. I despise small talk now. It's very hard to put on that old face, to tell people 'fine' or 'good.' I don't want to. I hope your husband makes it through his trip ok. I'm glad you're staying home.

    1. Thank you, Michele. Oh man... you are speaking my language. "What's new" is particularly painful for me. Zachary died. That's it. That is still new for us, we are still absorbing the truth, the impact, the devastation of it. Anything else that's new is garbage.

  3. I just want to say you write so well about this terribly hard and unfair situation

    I don't know what to say but i really wanted to leave a comment to thank you for writing

  4. I just lost my sweet 17 day old baby girl Heidi to a rare genetic disease called Berdon syndrome. We had no warning and were expecting a healthy girl. Perhaps the comment that hurts me most is when people ask " you didn't know anything was wrong". No - I didn't . Is this supposed to comfort me. And yet I would rather explain what happened and talk about her than answer " How are you"?

    I thought I could control my life with plans and prayers . My whole world view had been shaken. Odds and chances mean less to me. Yet - I get out of bed and am trying to find some happiness in each day in love for my husband and living son . I am happy to have found your blog. You write so beautifully and honestly about your grief. Thank you for sharing these raw feelings that I can so relate too.

    1. Thank you for reading and I'm so sorry to hear about your precious girl Heidi. I'm sad you can relate at all...