Where's the love (and support)?

When a woman has a miscarriage, stillbirth, or infant loss, it is understandable not to know how to react if you’ve never experienced the tragedy yourself. Even if you have experienced one, two or all three of these horrific events, it still doesn’t mean you understand what another grieving mother is going through. We all grieve differently. Some of us are external grievers while others want to internally process what has happened. I NEED to talk about what has happened. I NEED people to remember my daughter (and two miscarriages) and to just say her name: Eleanor (Ellie). I NEED people to continue to offer love, patience and support and to never assume enough time has passed for my “getting over” her unfair and untimely death.

After Ellie died I desperately searched for resources on HOW to grieve. Was I overreacting or dwelling or trying to be the center of attention as my sister said? Why couldn’t certain family members and friends help me? Why were they just being silent? How did women cope with this before me? How could I ease the pain? I was lucky to stumble across some great organizations like the Compassionate Friends and Faces of Loss, Faces of Hope as well as find books that I could relate to (I compiled them in the resources tab of this blog) and started grief counseling. But why isn’t there more support for us?

As National Pregnancy and Infant Loss Remembrance Day approaches on October 15, I find myself thinking about social norms and infant death more and more. I am proud of the community I belong to, although the membership dues are high. There is an amazing support network in place, but it still taboo for outsiders to acknowledge and support us. A study from 1978 titled, “Death of an infant: Parental Grieving and the Failure of Social Support,” The Journal of Family Practice, Vol 6(4), Apr 1978, pp 785-790, looks at the lack of support for families who have lost an infant compared to those who have lost an older child or adult and proposes ways to help the bereaved (please do not think I believe I have it any harder than someone who lost an older child or that they have more support). Thankfully there are more resources out there now through the two organizations I mentioned above. (I even sent one to family members and friends with no response or reaction…and no change.) But those are largely found and used by the bereaved themselves, not outsiders.

Women in my community spend an exorbitant amount of time just trying to get people to remember their child(ren). They create amazing art, fundraise and support causes, write heartfelt, soul-bearing stories…yet they are largely ignored or looked upon as dwelling or being negative. Death is a part of life. Of course we understand that. As much as I hate it, more babies will leave before their time. The indescribable pain of losing a child will eventually lessen as we begin to heal. But what are we to do? How can we make this subject less taboo and more accepted...because some statistics state that as many as 1 in 4 women will experience the death of a child!

It seems that wearing a pin with a lost child’s picture or name will never get the same reaction a pink ribbon will. Yet we are the same. We fight for awareness, survival and support.