Monday, April 18, 2011

In Bad Taste

Yesterday in one of my Facebook groups a heart mom with a new little baby was asking for advice from us veterans.  Apparently, some people (more than one!) told her it was "in bad taste" to be photographing her newborn son in the hospital.  I don't get deeply and passionately angry about much. Wal-Mart makes the list, but else-wise I'm a live and let live kind of person.  However, I've been fuming about this since yesterday.

While I was writing my book I came across a blog entry by a CHD survivor.  She didn't like that parents were sharing their kids' pictures online because she felt it left the children vulnerable to bullying later in life and possibly would make them feel exposed.  I give her credence as a survivor, but in the book I took exception to two things 1). the idea that we should EVER tolerate or give way to bullying in such a way that it changes what we do in our private lives and 2). the notion that any child who survives such a severe condition should ever be ashamed of what it took to just live.

I give CHD survivors a wide berth because they have to deal with far more than I understand, and Liam is one of them so they are like extended family in my mind.  However, anyone who neither has CHD nor  has consented to their newborn's open heart surgery before they ever leave the hospital needs a reality check about "bad taste."

More than 100 mothers responded to this woman's call for advice.  Not ONE told her that she should not photograph her child.  Several who had not photographed their own children, or felt they hadn't done enough in that situation, encouraged her to take many pictures.  Some women's children have died, and those pictures are more precious to them than most people can even imagine.

In an effort to bridge the knowledge gap, I present the case for capturing your child's first moments regardless of where they happen: 
  1. First and foremost, that child might die and those may be the only photos that parent ever has of her child.  Cold hard fact - if people find that distasteful then they need a reality check.
  2. This child might survive, and when he/she grows up deserves to know the reality and severity they overcame.  Additionally, doctors consider it an "epidemic" that so many adult survivors of CHDs don't understand their defects or get proper follow up care.  Hiding from the truth does no one any favors.
  3. As moms we're not going to get those birth announcement pictures that healthy babies get.  Some of us get helicopter transport, months on end at the hospital, and an overwhelming fear of losing our child, but we don't get what other moms get - so don't begrudge us our pictures.
  4. Matthew Brady is famous for his contributions to documenting the cost and reality of the Civil War.  Until the photojournalism of Vietnam, most Americans on the home front could not appreciate the true cost of war.   In fact, it's been the absence of coverage of our current wars that has been attributed to American apathy for the conflicts and our involvement. 
War is Hell, and honesty is never in bad taste.  Fighting for your child's survival is also hellacious and I've been damned enough on this road, that I'll be damned again, before I let any "civilian" tell me or my sisters in arms that telling the truth by capturing our children's fight is in "bad taste."

Would these people tell a mother of a child with cancer that she shouldn't photograph her child until his hair grows back?  Would they tell a mother whose child has cerebral palsy that she needs to crop out the wheelchair?  A friend was photographed after her double mastectomy.  Was that picture hard to see - YES, of course it was.  Know what's harder - having both of your breasts removed, fighting for your life though chemo, and worrying about leaving your children behind.  If I thought, "Oh, that's too hard for me to look at," then I would never be able to begin to empathize with my friend and so many like her.   It is the cost of survival.  It is the truth. If my friend is hurting, who am I to tell her to be quite because her pain hurts me?  Talk about bad taste.

So, is it hard to look at a tiny helpless little baby on life support machines? Of course.  Imagine how much harder it is when it's YOUR baby. Imagine that you are expecting a child and after he is born people don't want to look at him.  Think about how cruel that is. It's not like she's showing of her placenta, it's her child for God's sake.

If I treated you to a fancy dinner, yes it would be in bad taste for me to show you the bill.  When the subject is survival, the vulgarity is not in the battle itself but in the public's, and especially fair weather friends',  refusal to recognize the cost of it.  Polite society has historically turned a blind eye to domestic abuse, racism, and a plethora of abuses against humanity.  It is not vulgar to be honest and bear testament to the truth.  It is in bad taste to place one's own illusions about how life "should" be above the simple yet strenuous act of showing human compassion.  It's unquestionably rude to assume that one's personal discomfort supersedes the extraordinary pain of a woman whose child is close to death.

Who is so bold and so conceited to expect such a mother fighting to edit her experience for their own comfort?   That's the most extraordinary example of hubris I've ever heard.   Like so many situations in life, it's what the statement says about the speaker that is so much more telling than the words themselves.


  1. Every parent should have pictures of their child, no matter what, the more the better. How sad that anyone thinks otherwise.

  2. Brilliant and eloquently stated, Amanda!! I especially appreciate your accurate identification of the absurd and, indeed, cruel audacity of anyone to impose their own cowardly discomfort with stark reality on the victims. Such "hubris," as you so aptly stated, is, in my mind, unforgiveably obtuse. Are public hangings still allowed?

  3. the mother has every right to take pictures of her child!

  4. Love this post, Amanda. Photography provides us with a picture essay of our lives. If our lives were too short, then we have angel photos. And if our lives are marked by surgeries, and wires, and tubes, and scars and bandages, then so be it ... it's part of the picture essay of our lives. Well-said.

  5. Amanda: We took pictures of our first born who was still-born. We also took many, many pictures of Samantha through her many stages of life. From her life to her death, I love and cherish all of these photos. For those who say it's in bad taste, let them walk in our shoes.

  6. Love Love Love this post! I have had to defend myself on many occasions of displaying said pictures; whether being in an album, through social media or on my fridge. Why my fridge? So that when I think I'm having a shitty day, it can put things into perspective and remind me not to be so petty and not sweat the small stuff.
    As far as social media - it's a great awareness tool. People just don't realize what our kids go through and that picture gives them a visual emotion that can not be denied or reproduced and puts it in their memory bank to use when they eventually come across another family affected by CHD. And then it becomes..."so and so has a kid with a heart defect; let me get her in touch with you!"
    Also, it's a daily reminder of where we've been and where we are today. Screw everyone else...I don't care if it offends you or not.
    Thanks for stating, so much more eloquently than myself, what so many of us feel within our souls.

  7. Brilliant! Thank you for writing this.

  8. Thank you for writing this post. Brilliantly written!

  9. Thank you so much for this! I was informed by my aunt that I was "sick" and "didn't deserve to be a parent" for "exploiting" my child by taking pictures of my daughter post-heart transplant. This is the reality of a mom with a child who has special medical needs and I thank you so much for having the courage to speak out about it.

  10. well said Amanda! hearthugs,
    Kristien proud mom to Eliasxxx