Shhh...Don't Poke the Bereaved Mother!

"If you know someone who has lost a child, and you're afraid to mention them because you think you might make them sad by reminding them that they died--you're not reminding them. They didn't forget they died. What you're reminding them of is that you remembered that they lived, and that is a great gift......." ~Elizabeth Edwards~

So very true. I need to talk about Eleanor, not all the time, but often. Sometimes I feel like this is all some horrible nightmare; that it is surreal. Talking about her and what has happened, and even my fears with my current pregnancy, help ground me. And they certainly help get out some of the tension and pain that builds up. You won’t break me if you mention her name. Instead you will lift me up. Even though it has been 19 months, her death is still so fresh to me and I suspect it always will be. I think I will always need to talk about her and hope there is always someone there to listen. (Please don't get me wrong. There are many very sweet people who always let me talk about Ellie, especially my best friend and husband.)

I belong to such a beautiful, yet shattered community. We grieve. We remember. We support. We love. We are mothers no matter what the circumstances were surrounding the death of our child(ren) or how old they were when they left. Several members have had horrible conversations with family and friends and been treated so unfairly (me included). But what has really struck a nerve with me lately is Facebook.

Ok, we all know one shouldn’t judge their self worth by Facebook. Not all of those 200 people are truly your friends and that is ok! But when a bereaved mother posts about their child and is attacked for: not “moving on”; talking about something that should be private; trying to be the center of attention; even being inappropriate and macabre; or sometimes even worse, when they are ignored, I become enraged. There are already people out there that get annoyed with pictures and stories and updates about a Facebook friend’s child. I say unfriend/delete/block them! It’s your page, do what you like. Children are part of what defines those that have them (and it is okay if you don’t). But for the people that do not get annoyed at posts about living children, why is it any different when a post is about a child no longer here? The child was. They existed. They were loved and wanted. Why can’t the mother talk about that? What is the commentor afraid of? Why does a picture of my living son get 33 comments and likes while one honoring my daughter gets 9 or less or sometimes none at all? I’m not trying to “rub” my tragedy in anyone’s face. I am not hysterical in any way. I don’t need you to comment in order to know she was/is loved. But I do need her to be acknowledged. All I have left of my six day old daughter is her legacy. The pictures of her while here are personal and I couldn’t stand it if someone negatively commented on her appearance, so I choose nott o post them. But I also can’t post a picture of her first birthday or first day of school. There will be no pictures of her first sporting event or play or formal dance. IF Facebook survives the fickle social media world, I won’t even be able to post pictures of my grandchildren. So all I have, and all the members of my community have, are pictures of things that remind us of our child or events in where we are honoring our child. How hard is it to take a few seconds out of your day to lift me up while honoring my daughter? You won't awaken some sleeping bear or anything! I am a mother. A proud one at that!

Can you give me that gift Ms. Edwards is referencing in the above quote?

Trying to be Strong

What does that mean? Strong. "You are so strong." "You are stronger than you think." No, I don't think I am strong. Quite the opposite really. But what other option do I have? I must wake up. I must care for my son, whom I love more than anything except my husband. I must get up and go through the routine. I want the beautiful baby girl growing inside me. So, I continue on. I try. I try so very hard.

I have been fighting tears the last few days. On Saturday we went to the Ronald McDonald House where we stayed during Ellie’s fight. We try to bring lunch occasionally to the brave, humble, loving parents staying there because people did it for us when we were guests. We decided to stay and eat with them this time and spoke to a nice father and mother-in-law. We also got to see Ellie’s “heart” displayed in the hall. If you aren’t aware, the RMDH memorializes children with hearts…this chapter has several, several display cases full of them. It was emotional to see hers.  I miss her so badly. I think about what she would look like and what her personality might be. My heart aches for her.

This morning, after we dropped our son off at daycare, I had a flashback to the moment I was holding Ellie and signing as her heart slowly stopped. I didn’t want to upset or worry my husband so I fought as hard as I could to make the tears stop. I’m not sure he noticed. But I could hear and smell everything from those last moments. I caught myself starting to rock in my seat as I thought about it all. She felt so good in my arms even thought I knew it would be the last time…

Tears. I try so hard to think back on my grief counseling. Distraction. Looking at a picture of my son. Deep breaths. Take a drink of water. Count something to use that other part of your brain. Take a walk. This is so hard. When will it get easier? August marks the 19 month since Ellie died and it still feels so fresh.

I start my third trimester this week and I am terrified. Although we got the “almost” all clear from the Maternal Fetal Medicine Specialist and Pediatric Cardiologist (you will never get a 100% bill of health) at 20 wks, I am still worried. Ellie was okay at 20 wks too. And it was at her 4D ultrasound at 28 & 30 wks when we discovered her severe heart defect and hydrops. We are having a 4D for Adelaide this Friday and I will be 28.3wks. What if they see something again? And how will I react to the 4D in general? I have been trying hard not to obsessively call my doctor or rush to Labor & Delivery at every twinge of pain or fear. I try not to talk about my constant anxiety and awful thoughts that something is wrong. I try to make other people comfortable when I can and not talk about any of this (except here). I try. I try so very hard.

I know what some of you are thinking. Stop with the dire thoughts. Think positive. Everything will be okay, you just know it will be. Just TRY. That’s what I thought last time too. But now that the unimaginable has happened, it makes it much more real. Bad things happen. Period. And they can certainly happen again. There is no reason why some babies live and others don't. I don't care what your philosophical views are, there just isn't! It's not fair, but that is nature. 

I will continue to hold my breath through this pregnancy. And I will continue to worry. But I am hopeful. Enjoy this pregnancy, you say? It's time to move on and stop dwelling on the past when there is nothing I can do about it? You think I should just try harder? Walk two steps in my shoes and tell me that again.  

What’s in a Word?

After I was able to (somewhat) accept the death of Ellie, I started to seek out other women who had experienced the loss of a baby. Faces of Loss, Faces of Hope, the Compassionate Friends, and the MISS Foundation helped me tremendously as did a few private Facebook groups. I didn’t realize that I was part of such a large community and I often hoped the membership number would never rise. Although I feel I am starting to get to a point where I can offer support to other women, I would prefer to never know another bereaved mother! I want all babies and children to just be healthy and safe. But we all know that isn’t reality.

Last week, my husband and I attended the memorial service of a 24 year old man. His mother worked with us and his fiancé is a summer student worker in my husband’s office.  When we learned of his tragic death (an unsolved murder at the present time), my heart broke for his mother. Although there were very different reasons for the deaths of our children, I could empathize with her; I knew some of the emotions she would be experiencing. There would be: shock, guilt, anger, irrationality, pain, sorrow, and grief. She would be asking why and how something like this could happen and would probably try to blame herself in some way. Knowing this, I struggled with how to help her as someone 18 months further along in the grief journey. In the end I wrote her a brief letter and bought her the book, Beyond Tears: Living After Losing a Child. I dreaded attending the memorial service, both out of fear for seeing another mother in pain and for the feelings I was sure to experience remembering Ellie.

We attended the service and our hearts broke as we watched the family and fiancé. I hope the mass brought them comfort. After the service ended, I wasn’t sure how to get the book and note to the mother, so we walked out to the church foyer where she was surrounded by loving friends, family, and congregation members. We stood there awkwardly for a few moments when she locked eyes with me. She pushed passed everyone and approached me. She began to cry and we hugged. She said, “You know what this is like, don’t you?” And I responded through my tears, “Yes, I do. And I am so sorry.” A few moments later we released one another, and she turned back toward the crowd of people waiting to pay their respects. We gave the book and letter to her husband and quickly left, me in tears and my husband comforting me as always.

Since then I have been beating myself up. I should have said more to her. Having lost a child, I should have some magical words to comfort her; to take the pain away even if for a moment. I should be able to say something to soothe her and to help her make sense of what has happened. But I didn’t. I couldn’t. But then I realized that I didn’t need to. The moment we shared as we both cried, one bereaved mother to another, didn’t require words. Our hearts spoke to one another and our souls recognized a kindred spirit. Sometimes the best thing one can do for a bereaved mother in those early days is to just give her quiet understanding and silent love.

Time?

One statement that always perplexes me during the grieving process involves the idea that there is a set amount of time, as in “It’s time to move on.” To me, this statement implies that a parent can be over, or worse, forget, their child’s existence. How is that possible? I am not advocating for remaining in that dark place that we find ourselves in after the death of our child for a lengthy amount of time. I agree it is unhealthy to participate in risky behaviors such as drugs, drinking, or promiscuity as a method of working through grief. I certainly don’t think giving up in any form (at the least becoming a hermit and at worse ending your own life) is a viable option. And I do think it can be unhealthy to focus so much on the dead that we forget the living…or to do some living ourselves. Participating in charity events, anniversaries, birthdays, support groups, ect., can be very cathartic and a good way to channel those overpowering feelings of grief, guilt, anger, and pain. But what is the appropriate amount of time to grieve before “moving on?” The answer is simple to a bereaved parent but for some reason can be a mystery to those who have never lost a child. There is no set amount of time (or right or wrong way) to grieve. And there is no possible way to “move on” from what has happened.

I guess to “move on”, we’d have to be the same person we were before the unimaginable happened. But we all know that isn’t remotely possible. My life is forever defined by the trauma of loosing Ellie. No, that doesn’t mean I cannot go on to have a happy life, but it will never really be complete. There will always be a piece of my heart/soul/being that is missing. I will continue to miss my sweet daughter and wonder what sort of woman she would have been. And I will continue to honor and memorialize her in any way possible.

Instead of “moving on” I think I will “proceed with caution”. It is time for me to do so. But it will probably involve several detours and pit stops along the way. And that's just fine.