A Weekend of Grieving, Healing and Finding Hope

By Cynthia Prest

What am I doing here? This is hard. I don’t want to be here. I should leave. I could walk out, get in my car, and drive back home.

I was thinking this a half hour into the Share Group Leader Certification Workshop. I had planned this weekend for months, paid the fee and travel costs out of my pocket to attend it, and driven alone for six hours from my home in Wisconsin to St. Charles, a lovely city on the outskirts of St. Louis.

The retreat is a biannual training the National Share Office provides to aid those who work with bereaved parents. It’s an invitation for support group leaders, hospital chaplains, social workers, counselors, nurses, and bereaved parents to gain tools and resources to effectively work with families and hospital staff.

There were 25 of us there, and the majority of us had personal experience with perinatal loss. The workshop began with introductions, sharing our reasons for being there, personal stories, and names of the children we had lost. As we went around the table, I began reliving the losses of my children. I didn’t know how I was going to survive the next three days. I willed my body to sprout tentacles that would wrap around my chair to keep me in place.

The remainder of Friday was spent learning about the grief process, the special needs of children dealing with grief, navigating difficult decisions parents are faced with when a pregnancy isn’t going well, and understanding how cultural differences impact grieving. The presenters were gracious, understanding, compassionate, and knowledgeable. We were introduced to the Glen Davidson model of grief: shock, searching, depression, reorganization, and shadow grief. We learned that all of the difficult emotions associated with each of these phases is completely normal – devastation, questioning, guilt, jealousy, anger, helplessness, confusion, longing, and hope. You may think you’re the only one who feels these things, but you’re not. Through my journey of grief, I’d come to understand this, and it was validating to hear it from experts.

The first day was full of getting to know one another, learning new concepts, and reinforcing known ones. There were tears as we heard one tragic story after another of babies dying before their time. Our grief was raw, and it was shared. Knowing everyone in that room was holding me safely in the palm of their hand was the only thing that kept me there that first day. I had come down with a cold and was happy to retreat to my hotel room in the historic district to relax, knit, and surf for escapism television shows. I was grateful I survived the first day.

Saturday morning began with a presentation on complicated grief. I had never heard this term before and felt the need to comment, “Isn’t all grief complicated?” What I learned is that early pregnancy loss and stillbirth grief is complicated for a variety of factors: no one knows the baby’s existence except through the parents, the parents had hopes and dreams known only to themselves, those experiencing this kind of loss are unprepared for the emotional pain, it may be one’s first experience of personal loss, and there’s a social stigma associated with it.

We learned there is a distinction between grieving and mourning. There are three events associated with grief. Bereavement is the event of the loss, the death of the baby. Grieving is the internal expression of the bereavement event. Mourning is the external expression of the bereavement event. If you don’t recognize the bereavement event, engage in grieving, and then move into mourning, you get complications of grief, which can include depression, anxiety, and an impairment in daily living.

As I listened to the presenters talking about their own losses, the other participants share their experiences of losing their children, and saw how they had memorialized their babies, I felt cheated. My babies didn’t have names that I could write in remembrance on my name card. I didn’t have footprints of my children I could have engraved on a charm. I didn’t have pictures of my babies of when they were born. I felt a sadness that choked me from the inside out as I realized I had not mourned my children. My husband and I chose to not name our babies because it didn’t feel right at the time. I had not wanted to plant trees in their memory because we might move one day or the tree might die, and that would be like the loss happening all over again. I had never felt right about any of the ideas I heard other parents did to remember their babies. Throughout the course of the afternoon, it occurred to me why I was stuck in my grief. My babies didn’t have names. The fundamental right a parent has when they have a child is to name him. All people have names – it’s part of what makes us who we are. I realized I needed a way to refer to my children, to myself and to the world, in a way that is unique to each of them, other than “the first baby,” “the second baby.” I did something that afternoon that I still find extraordinary, and as if something or someone had awoken inside me and was using my hand as her instrument. I pulled out my journal and I thought about those children. I thought about the dreams I had for them, the lives I planned to provide for them, the birthdays I wanted to celebrate with them. I wrote names for our children. I thought about the day I lost each of them, and I wrote the first name that came to me.

I held this secret within me for the rest of the day. I waited patiently for the right time to share this transforming moment. After the workshop ended for the day, a group of us visited Share’s Angel of Hope, a beautiful statue where parents can lay bricks inscribed with their baby’s name, birth date, or a message. We then visited a cemetery where the owner has dedicated an area for babies who were miscarried to be buried. I was touched by his generosity and saddened for those he can’t reach. If only this was available to all parents in every city around the globe. We walked among gravestones for children who had died later in pregnancy or during early infancy. I was touched to see how their parents decorated each of their gravestones to reflect their uniqueness. After an exhausting, emotionally draining day, we went out to dinner and got to know each other even better. I was humbled to be surrounded by such strong, intelligent, gracious people.

Sunday was the day I had been waiting for, the topics focused on how to organize and run a support group effectively. I have been involved with Share for five years, but felt I needed more tools on how to organize and facilitate a group before embarking on the responsibility. I got many ideas for topics, advertising, activities, and taking care of myself so as to not become overwhelmed with it all. It invigorated me, and I couldn’t wait to get home so I could put all the ideas in place.

Before we left, the women of the National Share Office invited us to take part in a ceremony. We were asked to leave the room so they could set up. We chatted in the lobby of the conference center for several minutes, remarking on what we had gained and what was next for us. When we returned, the conference room table had been transformed with a candle, booklet, and certificate at each of our places. They led us through the reading of a beautiful poem and thanked us for taking part in the retreat. To close, we were invited to light our candle and say the name of the child or children we wanted to remember. The moment I had been waiting for was here, and I began to get nervous. Would I get through this? What would my husband think of me sharing these names before I told him about it? It felt right to debut my secret with this group, so when it came to my turn, I took a deep breath. I looked down at the table, because I knew I wouldn’t get through it looking anyone in the eye. I told the group that I had made a big decision, that I had finally decided that I no longer needed anyone’s blessing or permission to do this, and that I named my children. I heard intakes of breath and tears falling, and I picked up my candle. With a shaking hand, I placed the candle back on the table and asked my new friend seated next to me to light the candle for me. As she lit my candle, I shakily said that I light this candle for Alex, Amelia, David, Elizabeth, Gabe, and Madeline. The group continued, and we ended our retreat with hugs and promises to stay in touch.

It was an intense, emotionally draining, and very healing three days. The amazing people I met, relationships I developed, and information I learned were so very valuable. I continue to be in touch with several women I met there. As I get my community’s support group going, I’m sure I’ll be in touch with a lot more of them.

Thank you to everyone with the National Share Office for providing this retreat, for the presenters for dedicating their time to providing support, and to the participants for having the strength and courage to be there. I think of you often.

I’m happy to say that I will lead my first Share of Madison support group session in January, almost six years after learning about Share. The retreat was what I needed to feel I can do it successfully, and to have resources to rely on if I get stuck or need encouragement.

My biggest blessing from that weekend is the necklace I now wear every day that bears the names of my children. They are with me always, and that brings me peace.