October 15, 2015 was the 8th anniversary of the death of our son, Dexter William Robinson. On that day, not one person said to me "I know how you feel" or "at least he was just a baby" or "isn't it time you moved on?"
And the reason why? Because over the last 8 years I have trained my family and friends that my grief is my own and not comparable to anyone else's idea of grief. There have been times of course, and there has been, and will continue to be the metaphorical eye roll when I talk about Dexter, but I've also trained myself not to care!
It has occurred to me so many times over the years how badly we as a Western Culture deal with death and grief. The culture of silence surrounding the death of a child is astounding in a world where we talk openly about literally every thing else. You can you tube how to insert a tampon (aka luxury item!) but we cant tell you the details of our daughter who was stillborn.
When Dexter died I joined a club that no-one wants to ever be a member of. That of the parent who has lost a child. Of course, life continues to move on, but this group of people, we are never the same again. But society tells us that we are best to not talk about it.
Don't get me wrong, I know why you don't want to talk about it. You care about us. You don't want to see us upset, and you certainly don't want to feel responsible for upsetting us. But mark my words, NOTHING you can say, can make us feel any worse. There is a darkness when you lose a child that never really lifts, and it is a real testament to the human spirit that a parent can go on after losing a child. How do you go on you ask? You just do. You don't have any choice. Especially if you have other children.
The death of a child is always considered particularly tragic. An unnatural state of affairs in the world of the human being. But something virtually expected in the animal world. In Victorian times, the likelihood of a child becoming an adult and reaching their 60th birthday was only 40%. The death of a child from illnesses that are virtually unheard of now were extremely common and the youngest in any family was particularly vulnerable.
But once that child had passed, parents of the Victorian time were given more freedom to express their grief than we do today. Particularly when it came to photography (which was of course in its infancy at the time). Photography of the deceased, called Memento Mori, was common and often depicted babies and children with living siblings in a celebration of the entire family membership. (http://listverse.com/2013/02/07/10-fascinating-death-facts-from-the-victorian-era/)
These days, parents are more likely to be vilified for displaying photographs of stillborn children, as happened to a friend of mine recently. Although, there are a number of photography companies (Now I Lay Me Down to Sleep in the USA & Remember My Baby in the UK) that are specialising in photographs of stillborn children and their families which is a refreshing change. The importance of memories, at whatever stage of life and death is so incredibly important when it comes to parents and how they take steps to return to life whilst still celebrating their child who they have not brought home or only been able to bring home for a short amount of time.
Of course, these days there is a lot of information out there about how to commemorate your loss, but much of this information is still geared towards the loss of a partner or parent rather than the loss of a child. But it is there. And the more we talk about how we commemorate our own loss, the more normal it will be for other families.
I remember the day that Dexter died, my Husband and I went out from the Hospice that we were staying in, and went to a shopping centre. All we wanted to do was not think, and somewhere amongst other people seemed like the right place at the time. As we walked around, I turned to Chris and said "I dont want to seem all Angelina Jolie, but I think I'd like to have some of Dexter's ashes in a necklace or something." He said he'd been thinking the same thing and later that day the funeral director had suggested having some ashes set in a ring. My Mother in Law gave us a ring that was her Grandmothers and we had our jeweller design and make a ring from it and set some of Dexter's ashes in it. I have never taken it off, other than to have the ashes filled and have it cleaned. It's my small connection to him that no other person can see but that I know is there. However, I once showed it to someone and told her and she physically recoiled. Yet again another example of the discomfort we feel around bereavement.
So how do we make things less uncomfortable when it is so ingrained?
Personally I think one of the greatest tools for the outlet of grief is Social Media. Its not unusual to see posts on an almost daily basis now with people commemorating an anniversary or declaring their missing of family members or friends with love and photographs.
We are also able to connect easily with other people in similar situations. I am a member of a group on Facebook who is full of parents whose children suffer from or have died from Peroxisomal Biogenesis Disorders such as Zellweger Syndrome that Dexter had. There is something comforting about being able to talk to another Mother who has a much greater understanding of the nuances of these terrible diseases. We are experts in these conditions and have an incredible opportunity because of social media to be there for each other through the most trying of times.
There is no shame in sharing our grief, and social media is allowing us to break down the wall of shame that has been built around us for so long now. I love reading the memories of loved ones and seeing the photographs of people who have touched the hearts of so many people around them. Each time I have the opportunity to share in the memory of someone, I like to think that a part of the bereaved persons heart mends a little more. There is nothing that will "fix it," that will help them "move on." But the idea that they have been able to keep a memory alive for even one moment longer, I believe it helps make some of that pain more bearable.
The biggest question I have when it comes to grief is "who are you protecting?" Because I don't want you to protect me. I want you to be as selfish (and I mean this in the truest sense of the word) as humanly possible. Talk about your grief. Share your memories. Share as many pictures and stories and memories as possible. Don't worry for a moment about any one else's level of comfort. Because if I took someone's discomfort at me talking about Dexter, and times it by a billion, it would still only be about 1% of what I have to feel every day. Remember that. Remember your loved one in any way you possibly need to. And celebrate their memory every way you can. The pain will be less acute after a while but it will never go away. And every now and then it will come washing over you as though it was yesterday.
I have always said that the second year of Dexter's anniversary was one of the hardest. I wasn't in shock any more. I was back doing all of the "normal" things that people do and I had this incredible sense that everyone had moved on and was expecting us to have moved on too. Today, the waves don't come as often. But when they do they come with an enormous sense of guilt that they don't come more often. In a sense it almost feels that you can never win. But on the contrary, every day that I wake up and live this incredibly blessed life that I lead, I win. I will never get over my loss, but I don't have to. I have set the rules for my grief, and I will continue to ensure that other people can do that too.
I was reminded yet again the other day of how much better children are at grief than we are. My friend passed away almost two weeks ago now from cancer. Arlo and I took around some food and stayed to talk to her family, who we know quite well, and Arlo played with her son. The boys are friends and had had play-dates on a number of occasions. My friend's son is an incredibly bright and affectionate little boy. When I walked in to the room, he ran up and hugged me and said, matter-of-factly "My Mummy died." He wasn't worried that I would be upset, or embarrassed about sharing, he just said it how it was and went back to playing. Of course, it was heartbreaking. But equally, the fact that he was so willing to talk about his Mummy made my heart warm. Of course, he has been upset and angry and all of the other things you would expect, but he's not hiding it. He is naturally grieving for his Mother. He's also blessed with an incredible Father who is a pillar of strength and love. The family are hurting, but they are allowing the community to help. Allowing us to share in their grief at the loss of an incredible human being. This is how it should be.
In talking about your loved ones death, you can also talk about their life. Celebrate it. Talk about the good times. Talk about your pain and talk about your grief. Its your responsibility to keep memories alive. Take that responsibility seriously. And please know, you are never, never alone.