Category Archives: Social Media & Grief

August Book Giveaway on Goodreads

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Mary Rose’s birthday month is here and we are offering eight signed copies of Walking the Labyrinth of My Heart: A Journey of Pregnancy, Grief and Newborn Death this month on Goodreads. Enter to win a copy by CLICKING HERE:

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Halloween

Halloween_symbols_like_the_jack-o'-lanternIt is the second Halloween without my baby girl. I have been thinking all day about my Facebook feed with pictures of adorable children in their Halloween costumes.  I love these pictures.  I enjoy seeing my friends’ children, my niece and nephew and cousins.  But today I did not post a picture of my son in his Martin Kratt bat creature power suit.  He gives me his three-year-old stink face smile as he sits on an excavator at Touch-A-Trucks in his costume and I snap another photo.  He holds my hand as we walk and trick-or-treat for the first time this evening.  We ring four doorbells and he is in awe of the bowls full of candy.  I did not post a photo of my son today because I’ve been thinking about the mothers who have had miscarriages and stillborn babies and babies who died after birth. I am thinking of my friends struggling with infertility and I’m thinking of the ones who are not here.  My Facebook page is blank today because I am holding the space for the ones we love who aren’t here.

“Halloween isn’t even a holiday,” my husband says to me when I tell him what is on my mind. But Halloween is a part of our American culture.  Tonight my pumpkins are in memory of the babies who are not here.  I know that they are very close to us.  In our hearts.  On our minds.  May our world remember us too:  the mothers and fathers and siblings who remember our own on the other side of the veils, even as the children around us squeal and laugh and shout “Trick or Treat!”

As night settles in around us my son holds my hand and the jack-o-lantern’s glow reminds me of my daughter, my love, my Light.

Social Media and Grief

facebooksquareIt is July 2014. I am pregnant with a baby that is dying. I wait and wait. Each day and night is long and feels like a week. By the time my daughter is born in August, I will have had 21 days of contractions. Until then I sit inside most of the summer unable to be active because of pain in my hips and legs and back. I am on my computer where if I cry no one will know. A Facebook friend, who is also a midwife, posts “I hate all things post partum.” She has just given birth to a beautiful healthy son, her second living child. I feel like someone has slapped me in the face. The words sting, and they stay with me for a long time. I know that she does not hate her beautiful new son. What could I say when I knew that I would go through labor to birth a dying baby and walk those long months afterwards healing with my arms empty?

Other Facebook friends complain about their pregnancies. They are uncomfortable or the baby is big and active and kicks once again. I remember how much I wished my daughter would move and grow, how much I wanted a normal pregnancy with kicking and turning. Instead I carried a baby who barely moved and I planned her funeral while I carried her praying that I would meet her alive, even for a moment. After an ectopic pregnancy, a friend listened to her pregnant co-worker complain about the sacrifice of not drinking for nine months. Another friend who suffers from endometriosis and has not conceived a child tells me that she is tired of hearing her pregnant friends complain about the nausea and kicking. “I’m sure that pregnancy is hard,” she says, “but my friends are carrying these miracles.”

There are many women hurting while others seem to take for granted the good fortune of their healthy pregnancies and healthy children. I was childless for 15 years, and remember that constant discussion point around the question “Do you have children?” I could not understand then, and I still do not understand, why this role of motherhood is one that should define us. I was a writer, a grant writer, a teacher, a poetry therapist, but none of that came up in discussions. Mothers talk about their children often. There is no need to ask a woman if she is a mother. She will tell you about her children, even if you don’t ask.

One in four pregnancies ends in miscarriage and one in 160 births are still. A certain percentage of newborns and babies die from neonatal illnesses and SIDS, and another percentage of women are infertile. Therefore, there are many of us holding our electronic devices looking at ultrasound photos, birth announcements, and the joys and the complaints of parenthood. How do we take the posts and life trajectories of our friends and colleagues who seem to be clueless about other people’s struggles? They might not mean any harm by their posts, but somehow those words and photos hurt deep inside our broken hearts. It is almost eleven months since Mary Rose was born and pictures of newborns, especially girls, still sting just a little. I bless each baby I see, and remember my sweet Mary Rose, longing to hold her in my arms.

I didn’t know that my friend, Yana, was pregnant at Mary Rose’s funeral. She didn’t tell me for a few months and she never announced her pregnancy on Facebook. She refused to post ultrasound photos. Yana is an academic whose first two pregnancies ended prematurely. Many women work well into their forties putting family on hold until they are established in their field, and sometimes it is too late to conceive then. We discussed Facebook and she said “I won’t put this on Facebook because I don’t know who is looking and who is suffering in her own situation.” Perhaps only those of us who have been on the other side of the “normal” and exhausting joys of parenthood are aware of the pain and emptiness within a woman who wants to hold a living child in her arms.

The way that I have handled social media is to either hide or unfriend anyone who is causing me any disturbance in my inner peace. For people who have hundreds of friends and who are only acquaintances, I don’t think that they will notice when I click “unfriend.” And for those who are closer to me, who might have some interest in my own life, I click “unfollow.” I don’t want to read angry or upsetting posts. I also find myself so overwhelmed by those who post often during the day that I unfollow some dear friends just to limit my exposure and clicking. I can always check back on their wall and I know that my deep and meaningful relationships are alive in person, on the phone, and on Skype.

I know people who have deactivated their Facebook accounts, but I am grateful to my trisomy 18 community and support system that has linked me to other women going through their grieving process. It was in Facebook messages that I got to know my friend, Sindy, who painted “Healing Companion.” I became friends with a dear woman and artist from California, Lakshmi, whose son Siddha was born and died the April before my Mary Rose. I also came to know a woman, Sherri, whose last two pregnancies ended in death due to trisomy 18. Her sons are named Bryson and Ryder. I love these women, though I have never met them. Their babies are in my hearts. We have a mutual understanding in our experiences that few can understand.

One of my friends recently had a grief-related, cyber-bullying experience with one of her Facebook friends and I encouraged her to stay connected online and recognize that she has control over some of the experience by unfriending and unfollowing folks who are causing her any difficult emotions. There are many who look at the dangers of the Internet, but if we use this virtual world to support and encourage each other, then we can use it for good. Most of my support came through a screen as I did not get out much with my pregnancy to Mary Rose. I hated the phone those many long months and am only returning calls recently. I could not control my weeping and I can’t talk while I cry. The phone seemed useless to me after finding out about Mary Rose’s genetic defect. One of my dearest friends, Paige, thought I was upset with her when I didn’t return her calls last spring. I started to cry on the phone thinking that I had hurt my friend. Every word took such effort, and I did not know what would trigger my tears.

It is my hope that we can all be more sensitive to our others, our friends, relatives, bosses, sisters, acquaintances and women who are each walking and maneuvering through their own personal challenges. I don’t have too many answers, but I’m willing to walk and discuss ways that we can become more sensitive to each other’s path. I’m certain that we can make this easier together, by considering the weight of our words and actions, even our inactions. We are connected on the web and in life. Let’s connect our hearts and consider those who are suffering quietly, watching and reading our words through a screen with tears in their eyes.