As I have written so often, when Lukas died 37 years ago, I grieved very much alone. My then husband and I grieved very differently and we had a very hard time with each other because of that. I cried almost all of the time, which he couldn’t stand and I wasn’t able to go back to work for 6 months. He never cried in front of me and he started a new business within weeks of Lukas’ death so that made me think he had already moved on. It wasn’t until we had a follow up visit with the neonatologist (about 4 months later) who told me that men and women grieve differently and because of that difference, it can be an added burden to the couple’s grief.
I grieved alone not only because of the differences in the way we grieved our son, but because I couldn’t find any support or receive help from anyone whose baby had died. Remember this was 1980; no internet, no Google. Grief was spoken in hushed terms and usually only about the death of parents, grandparents or other family members. Death of babies or miscarriages was not spoken about at all. I couldn’t find any books or articles on infant death and I didn’t have the mental or physical energy to go to the library and do a search, knowing I would have to speak with the librarian to help me with the search. I knew I would fall apart by just asking for what I was looking for.
Today I am grateful for the available resources for the bereaved parent. Most hospitals have protocols in place for the parents. The perinatal social worker or someone from the Pastoral Care Department will meet with the parents and speak to them about some of the aspects of grief, suggest funerals or religious ceremonies, and offer what grief resources are available to them in the community whether it be a virtual support group or a physical support group. None of this was around in 1980.
Today because of the internet, there are many bereavement groups on social media including specific ones for specific diagnoses. All of these forums are helpful to the bereaved, especially when you desperately need someone to talk to whether it is 3pm or 3am. I belong to a few groups and I post my blogs and grief quotes to them and offer my “wisdom” when I think it is appropriate. I am resolved about Lukas’s death 37 years later, but I remember those horrible months in the beginning and how it would have been helpful to know there was someone somewhere who knew what I was going through. I am always heartbroken when a new mom posts within a few days of her loss looking for advice or answers to her questions so that maybe she can make sense of her baby’s death. The truth is the loss of our baby will never make sense. Some moms may be able to answer some questions, but the important thing to remember is that even if we had the same reason for our loss with the same outcome, or a different medical reason with the same outcome, we cannot tell her why, or nor can we tell her what to expect as the reality of the loss sets in nor can we tell her how to grieve. Each of us experience our loss uniquely to ourselves That is why there is no right or wrong way to grieve. All we can do is be a compassionate listener and offer our support.
I also would have appreciated going to a support group to be with other parents like me. They didn’t exist yet. 8 years after Lukas died, the hospital where Lukas was in the NICU started a support group. I originally attended to offer hope and support to these newly bereaved parents, but after 3 months I became the facilitator of the group. I was the only mom who had a loss years ago, had incorporated the loss into my life and had 2 beautiful daughters after Lukas. I knew exactly what these parents were experiencing. Over the next 12 years, I facilitated 2 support groups for pregnancy loss and 2 support groups for pregnancy after loss at 2 different hospitals.
Consider joining a physical support group, even if your partner won’t. There is something very healing and intimate about sitting in a room with other bereaved parents, watching their body language, hearing their tone as your words and emotions come out of their mouths, having your loss validated whether it was an early miscarriage or a full term death. It is a safe place to discuss your feelings, your baby or whatever else you need to say no matter how many times you need to say it. Everyone in that room has been exactly where you are and it is good to see people further along in their journey than you are at that moment. They are a source of hope for the newly bereaved and as new parents come to the meetings, you will be a source of hope for them.
Joining a support group doesn’t preclude you from being members of bereavement groups on social media. One doesn’t replace the other. Your voice adds to the support for the bereaved whether in person or virtually. I believe that my voice on behalf of the bereaved is Lukas’ legacy to the people I touch. This can be your child’s legacy as well. I believe we must use our voice to help the bereaved and by helping others with their grief, we help ourselves as well.