Friday, March 15, 2013

My Grief Project - Technology and Social Media As a Way of Healing

"Don't expect everyone to understand our journey.  Especially if they've never had to walk your path." ~ anonymous

In the days after Nora died, I would lay on the couch with my head in my husband's lap, Googling 'stillbirth' and 'pregnancy loss' on my iphone.  I would type questions into the Google search box as if it were a crystal ball or a fortune teller, asking Google to provide me with reassurance that I was not alone in this tragedy and that I could go on to have a healthy child again.  At one point I remember putting in the words "why me" and "will I have more children" in the search box.  I did not click the magnifying glass icon in fear that Google might actually have an answer and I didn't want to know.

But, reading other peoples stories on the internet was helpful.  I realized I wasn't alone.  One website of information led to the blog Glow in the Woods, and the blog led to an online magazine, Still Standing Magazine, and the magazine led to online support groups like the MISS Foundation and The Compassionate Friends.  I slowly realized that I was now a part of this secret society of 'baby lost' mothers that I never saw articles about on the Baby Center webpage’s I visited with diligence while pregnant. 

As a therapist, I am used to therapy in person and face-to-face, but I decided I would give connecting through social media and the internet to soothe my grief a try.  I joined an online support group forum on The Compassionate Friends website.  Women welcomed me and e-mailed me and told me about their stories of stillbirth and loss and I would share mine.  One woman who contacted me was the age of my mother, and shared her story of losing her daughter to stillbirth in the 1980's.  I was the age of her daughter and this woman still remembers, still grieves.  In a way, this validated my grief.

Then a week before I was supposed to go back to work I got a letter in the mail.  This letter was from my cousin’s good friend who had just lost her baby in November of this year, when she was six months pregnant.  I was so touched that this woman reached out to me with a heartfelt letter and she asked me to contact her through e-mail, how could I not e-mail this woman as she referred to me as a mom in the letter, which I often still questioned my status as such. But, she got it! She understood.  We have been e-mail pen pals ever since, like the Grieve Out Loud Pen-Pal Program.  

And of course there is Facebook. While pregnant I had been posting my belly growing pictures on there and in the days right after Nora’s death I knew people would probably start to ask where the pictures of the baby were if we didn't post anything. I was in fear of saying anything on Facebook, I always viewed it as a place of fun, not for depressing stories of babies dying. But Nick and I decided to post something anyway.  Nick wrote and posted a beautiful obituary about our joy of expecting turning into loss and sadness at Nora's death.  And I am glad we decided to do so because we were surrounded by overwhelming love and support from friends and acquaintances on our Facebook walls and at her funeral due to the post.  The use of this social media is what led to there being so many old friends, with whom we haven't spoken in years and who lived over 250 miles away, show up at Nora's funeral.  Facebook truly brought a community together, not just online, but in person that day we honored her.

Now Facebook has kept me connected to the new people I meet along the way in my journey of grief from child loss.  I recently joined two Facebook closed groups, one from my own in person support group that the women have formed on Facebook, as a way of being able to vent to each other at any moment we need to about our struggles with grief.  Another group I joined is the same concept, but is open to anyone who has experienced a stillbirth called S.O.B.B.S.  There are over 2,000 members from across the United States with whom I can ask for advice or see where they are in their journey of grief to know that I am not a lone voyager on this journey.   

I was even able to connect to mothers who had lost their babies on Pinetrest of all places.  I started making boards of pregnancy and child loss quotes.  Then women would re-pin the quote I had just pinned and start to follow me on Pinetrest.  I would look at their profiles and see why they had lost babies too.  It said so through their profile pictures of a baby on an incubator or a mom writing in her profile description about her being a mother to an angel.

Technology and social media has opened up a whole world of possibilities for me to connect and share my grief with others and gain support, if it be through blogging, Facebook, e-mail, online support group forums, or even Pinterest.  Social media and technology have provided me with so many paths to healing in creative new ways.  It has connected me with other moms and parents who have experienced the same kind of loss as I have and have traveled this road of grief before or with me at this moment in time.  This provides me with hope, that I will be able to navigate this sea of grief and now I have other sailors to go on this voyage with through my social media connections.
I look forward to continuing to use technology and social media to heal and can't wait to see how this type of healing will continue to form and shape my grief journey.  There are so many resources that I use and find helpful besides the ones I have discussed above.  In my website's section on this blog I will continue to update it with links I find helpful as well as the 'blogs I follow section' on the left hand side of this page.

A few websites that I did not get a chance to talk about in more detail include Still Standing Online Magazine focused on bereaved parents and infertility issues, Unspoken Grief where any family member can share their stories about miscarriage, stillbirth, and neonatal loss, as well as Faces of Loss, Faces of Hope where they put a face on miscarriage, stillbirth, and infant loss.

What form of technology, social media, or website, have you found to be most helpful and why?


  1. I lost my daughter Ligia fullterm when i went into labor this january. I posted her obituary on facebook and sadly only my parents commented or reached out to me. When i tried to have one on one interactions about her with my friends, many didnt want to talk or "couldnt handle it". It has made me feel like it isnt safe to share our story with the people i love. I still wake up every morning and breathe in and out all day but i feel so changed by this. Im so grateful for my husband, he is my rock and he has kept me from going crazy. Im so sorry for your loss, i am crying for us, and all of the mothers of angels out there. I hope you find healing and great happiness in the months and years to come. You are a great mom and dont you forget it. Im trying not to all the time. =*)

  2. All for Lili,

    I am so sorry to hear about your loss of Ligia this January. I am also really sad to hear that no one will listen to your words of grief. I think it is very important to be heard when we tell our stories as new moms and as grieving parents. I would love to read Ligia's obituary and I know that Unspoken Grief the website listed above post stories like that if you are interested in submitting, also Return to Zero (just Google it) will post your story as well as they just posted Nora's on Saturday. These are sites where people will want to hear your words. If you want me to read your words send her obituary to and I promise I will read it.

    Also, I started a project called "white signs of grief" where any family member of grieving from child loss can make a sign and share a message about their grief journey with others. Check it out and send in a picture of yourself with your words on your white sign. I promise that others care about your little girl and your feelings now. Check it out at . Thank you for letting me know I'm a good mom, you are too.


  3. I am so sorry to hear about your loss of Ligia this January. I am also really sad to hear that no one will listen to your words of grief. I think it is very important to be heard when we tell our stories as new moms and as grieving parents. person most followers instagram

  4. On my due date, I lost my daughter to stillbirth. I had my final OB appointment just days prior, when the baby was healthy and had a strong heartbeat. I have found great comfort in reading your blog. Reading your story brings me hope and is a glimmer of light in this very dark tunnel that I am traveling in right now. I have also found comfort in writing my own blog: How did you make your blog public? Do you have tips for how to reach others with your blog? After such tragedy I feel compelled to tell my story and I hope to help someone else as you have helped me.


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