Thursday, May 24, 2012

Grieve Out Loud

     Earlier this week I tweeted, "I have created a lovely haven in Twitter where the whole world is aware of babyloss and we all mourn together, openly."  

     I once asked a friend to name the first four women who popped in his head.  Then I asked him if he was aware that three out of those four had experienced some sort of pregnancy loss.  Of course he had no idea.  I walk down the street wearing my "1 in 4" shirt and NEVER has anyone so much as mentioned it.  (I have seen people reading it.  Then they look away quickly.)  
     We BLMs have a social plague.  Nobody wants to hear or talk about pregnancy loss or SIDS or genetic defects.  I asked my doctor why no one ever warned me about stillbirth and he said, "Pregnancy is supposed to be a happy time.  Why would we ruin that for you?"  (Um.  Excuse me?  It was pretty damned ruined when I had to deliver a stillborn.)  So, to keep pregnancy nice and shiny for the 3 in 4, no one talks about it.  
     This week I was lucky enough to get to talk with Julie McAnary who founded Grieve Out Loud, a pregnancy and infant loss support network.  Julie's a woman who talks about it.  She opens her virtual arms to all of us, reminding us that no matter how dark and scary our lives get, she understands, and respects our need to talk about it.  I got the chance to find out a bit more about the woman lifting the veil on our stigmas.
Julie, how did you feel in your first days of reaching out to the babyloss community?
"It was a raw and rather numb time for me. I knew I wanted and needed the support of others, but being able to just empty my thoughts and feelings into my blog was more important. I've always been a very 'colorful' writer and was actually quite shocked how the community understood my grief no matter how ugly it might have sounded. They were all feeling what I was feeling, I think I just had the guts to 'go there.'"

How does your Pen-Pal program work?  How are people matched up, etc.?
     "We have nearly 50 different volunteers who make up our team. They each represent particular types of pregnancy and infant loss from miscarriage, ectopic, molar, missed miscarriage, stillbirth, preterm labor, incompetent cervix, neonatal loss, loss of multiples, placental abruption, SIDS, genetic defects, . . . the list is extremely vast.
     "We match you based on your history of loss. For example if you lost a baby to full-term stillbirth, we would match you with someone on the team who also suffered a full-term stillbirth. Spina bifida to Spina bifida. Repeat pregnancy loss, to repeat pregnancy loss, etc.
     "All exchanges are e-mail based, however if a family supplies their mailing address I send them a little something.
     "We have Pen-Pals for fathers and grandparents too, who often get left in the shadows of grief with no one to talk with about their loss.
     "We also have a 'First Step Program' where friends and families can contact us with information on a friend or family member who experienced a loss, but might not have the courage/strength to contact us themselves. We then make the first effort to contact them and establish some kind of rapport."

Is there anything in particular you have carried with you from you personal Pen-Pal experiences?
     "I know just how important it is to have someone to talk to who really 'gets it.' While I have some amazing real life friends, my online friends were the ones who really helped me pick up the pieces and move forward. They weren't afraid to ask me questions about my son, or even mention him. My real life friends seemed to completely ignore the fact that we even had a son, never mind the fact he died. I treat all my Pen-Pals like real life friends.

I love your idea about a babyloss convention.  Do you have any concrete ideas forming? (Cities, dates, details, anything?)
     "Not really. I still consider it a "pipe dream" if you will. I'm from Cincinnati so I'd want it somewhere close to me (although Las Vegas was brainstormed just to bring an element of 'fun' into the mix). I would want it to be a 2-3 day event with keynote speakers, creative project booths, COCKTAILS and lots of pampering going on! It would be our big chance to meet all the wonderful people we went through hell and back with. I owe lots of hugs and tears to a lot of great women out there . . .
     "I thought about trying to set up a fundraiser, but have no idea how to get started. Maybe one day I'll run into someone with experience who can really help me make this dream a reality."

Tell me a little bit about your new project celebrating milestones.
     "Lots of people post on our Facebook page ( looking for ideas for first birthdays, due dates, anniversaries, etc. I consider these milestones.
     "I remember when we were approaching our son's first birthday and how uneasy I felt about it. I knew I wanted to do something, but just wasn't sure how to plan or if I SHOULD plan. I wondered if anyone would remember his birthday, or if anyone would have the courage to acknowledge it? A lot of people didn't and for that, I was bitter and angry.
     "So I thought this exchange would be a good way for families to feel the love from someone else remembering their baby. I also feel like being creative and thinking about someone else will help us think of ways to remember and celebrate our own milestones."

What would you say has been the hardest milestone for you?
     "Honestly, watching other people have babies was/is the hardest thing for me. Obviously because my birthing milestone resulted in stillbirth, I still feel entirely way too much jealousy when it comes to a live birth even if they are complete strangers to me. We're approaching 3 years now and I still have a hard time with jealousy . . ."

Do you have any other charities for bereaved mothers that are close to your heart?
     "I really benefited from other babyloss bloggers, not so much charities. Stirrup-Queens ( was one of the first websites I found which was invaluable to me for finding other stories to follow. I submitted my link and soon other families were finding me as well.  Glow in the Woods ( was another website I visited often that focuses on stories and questions for their readers."

     Most people around me don't understand what I'm going through.  I've written about that ad nauseum.  For those of you who aren't BLMs, try to imagine a life where what you consider to be a defining moment is completely taboo in the eyes of the public.  Imagine if suddenly the world didn't want to hear about your job, or your love or anything important to you.  We can't shout out our feelings because the world has apparently turned their deaf ear.  So women like Julie have shown us that even when the world stops listening, we can turn to each other.  She has built our own little virtual world where everyone is aware of babyloss and we talk about it.  Together.  Thank you, Julie.

To visit Grieve Out Loud's website, click here.
To participate in the Voices of Loss pen-pal program, click here
To participate in the Monthly Milestone Exchange, click here


  1. Grieve Out Loud is a wonderful program. Her idea for a convention sounds wonderful.It is so sad that people can't talk about it or turn away after reading your shirt. One woman I follow calls it the secret club. People will talk about stories from the news yet this never makes the news. It is huge and our country needs to be trained to communicate with BLM's.

  2. I love that! The "Secret Club!" I really think we need to find a Hollywood spokesperson like Sarah McLachlan for the Humane Society. Then people might pay attention...

  3. I agree with you that everyone wants to believe that pregnancy is happy and great experience and like you mentioned for 3 out of 4 it is but for those of us who have stillborn's, genetic defects and miscarriages we need the suppor tand strength that comes form speaking with others and it is important for doctors to talk about it a little bit more :)

  4. Exactly. I know we can't go around telling pregnant women our horror stories, but at least someone could make it feel more "okay" for us to talk about it at all. I'm so glad I've found the underground baby loss community!