Tuesday, May 21, 2013

Breaking the Silence

There is a cloud that surrounds infant loss, blocking it from the mainstream's view.  It is a cloud of uneasiness, fear, and uncertainty.  If you aren't a part of this sad community, you can't fully understand what it is like to be, and you realize you'd never want to.  We don't want you to either, but what we do want is to be heard.   Our children do not have a voice, so we speak for them, and we want you to listen.   

Until recently, I never thought about the fact that babies die.  I knew of women who had miscarriages, but I didn't really stop to think about what that meant, how much that must have hurt.   I never thought about the emotional roller coaster a family goes through when they lose their child.  About the strain it puts on all of their relationships.  About how much they want to scream out in anguish, reaching with outstretched fingers just for a speck of understanding.   Of recognition of their pain, of support in their journey.   

Think about this:  how many times do you see a Facebook post calling for prayers or support for someone with cancer or another disease?  How many times is it shared, liked, or commented on?   How many posts plead for help with abandoned animals?  How many posts share the pride and service of our nation's soldiers and call for your support?   You probably see two to three of these types of posts a day.  Maybe you share it.  Maybe you like it or comment on it.   Maybe you even visit the website in the link.  All of these are wonderful causes and should be supported and shared.  Please, keep doing it.  

Now, think, before this happened to me and I began sharing my blog and links with you, how many times did you see a post on infant loss?   A website to support grieving families?   A link to a Wall of Remembrance for children lost to still birth or miscarriage?   How many 5Ks did you attend that raised awareness of SIDS?   It's probably safe to guess that the answer to all of those questions is slim to none.   That's because no one talks about it.  No one outside of the baby loss community, at least.   If you go to your search bar on Facebook right now and type in any sort of related keyword, you will find hundreds of pages set up for these types of things - most of them administered by a brokenhearted parent who is just trying to be heard.   When you tell someone your child has cancer, banners fly into the air, fists are raised, shared statuses fly through the internet at lightning speed.  It's a fanfare for salvation.   When you tell someone your child was stillborn, people shy away in silence.  A few people will quietly tell you it happened to a friend of a friend too.   But, that's about it.  A few people have shared my links when I post about a charity I am trying to help or a website I have found that offers support, but not many.  

 Babies dying makes people uncomfortable.  While I admit, it is not the most cheerful of topics, that doesn't make it any less worthy.  Women affected by infant loss deserve to be heard in the same fashion as women affected by breast cancer.  According to the National Cancer Institute, 12.5% of women will be diagnosed with breast cancer in their lifetime.  According to Pregnancy and Infant Loss Awareness and Information, 32% of pregnant women will experience loss.  That does not include the children lost to SIDS or other issues after birth.  That's a staggering amount of women.   Women whose pain isn't talked about or acknowledged in the same way as others.  We are still fighting for our lives, just not in the same way, and we need just as much support by our society.  

I have unwillingly joined this community at a very pivotal time.  Two films are being made as you read this to help bring this issue to the forefront.  The first is The STILL project, which is a documentary about infant loss.   The second is a major motion picture called Return to Zero.  This movie, starring Minnie Driver and Alfred Molina, is based on the true story of its writer and producer, Sean Hanish.  It tells of the journey of one couple as they face the storm of losing their child and how they cope with that loss.  It is the first movie ever to be made with still birth as the main focus.  Because it is an independently funded movie, its advertising budget is nil, which means very few people will know about it and even less will actually see it.  There is even a chance Hollywood won't release it (even on DVD) if it doesn't feel that there is a willing audience.   But, not if I can help it.

This is where you come in.  Stand with me to help break the silence surrounding this issue.  Help me give my community a voice.  Help us be heard by everyone - not just the people who know and love us.  The first step is easy.  Click on this link and sign the pledge to see Return to Zero when it comes out in theaters.   When it asks for your Local Leader, type in my name. As a Local Leader, I will continue to promote this film in my community until its release.  (It will ask for your email address.  Don't get squirmy.  You have a "junk" account, I know you do.  It's just to keep track of actual pledges.)   The second step is a little more difficult.  Share my blog post or the link to the pledge form with your friends.  A few days later, share it again.   And again.  And again.  Share it until the movie comes out next Spring.  Don't let people forget.   If you find yourself thinking, "Oh, what if people don't want to see this kind of thing in their newsfeed?" then you have hit the nail on the head as to why we have to share it.

Click here to see a few clips from the movie and interviews with the actors and writer.

I know this movie will be difficult for you to see.  But, think about how much more difficult it will be for that 32% of women to see it.   I am one of those women.   I have made friends with some of those women.  We are everywhere.   There are far too many of us for silence to be even remotely acceptable.  Be a part of something big.   Be a part of breaking the silence.  
You might as well do it now...I'm not going to shut up any time soon.  I promise.  


  1. I'm so proud you are a local leader!!!! Please let me know what else I can do to help you.

  2. I believe everything happens for a reason. <---- Please know that, that statement is not meant to be directly about your loss.I heard about your story shortly after you started writing. I started reading it faithfully... not really sure why at the time, but I felt connected to you as a Mom. You made me realize how things can change in an instant. That being said, a co-worker of mine has just lost her son after having a completely healthy pregnancy. Now I know why I was drawn to your blog. I know there is nothing I can do to take her pain away but I feel that your blog has helped me understand her, and understand you. Thank you for spreading the word and breaking the silence.

    1. I am so very sorry to hear of her loss, Melissa. I hope she is able to find some sort of outlet for her emotions. I have found the baby loss community to be extremely supportive of one another. If she needs anything, please let her know she is more than welcome to contact me. I have an email address on Kenley Around the World she can use. I have met many wonderful women through my blog and other online venues. None of us want to be here, but we open our arms to every new arrival. And, thank you for your words of support. Sometimes, this blog feels overwhelming to me because it is a constant focus...but at the same time it is healing. When people let me know that they appreciate what I am doing, it keeps me moving forward.

  3. Thank you. I had written down your blog for her to look at. You're an amazing person and Mom.

    1. Melissa, I just wanted to let you know that sometimes when people other than me share this post, your profile pic somehow gets attached to the link. Not sure why or how to stop it, but it's a beautiful picture!

  4. I will support this movie 100%. I myself lost my baby boy after a healthy pregnancy and 1 week over due. He had a heart defect that we knew nothing about. It has been 20 years and the pain is still there every day of my life.