The Separated Soul

What is the term we can use for a bereaved parent? We are just that, but is it ok? It doesn’t feel like the right name all the time. I’m not even sure that siblings who have lost a brother or sister have a name, either? Maybe there doesn’t need to be one, because it’s a label and frankly, who needs labels?

This topic came up recently and there was a brief discussion over what bereaved parents might be called … I suggested the term, ‘courageous ones of the earth’ and ‘the separated soul.’ To me, it feels a little more appropriate and gentle than ‘the one who’s child died’ or ‘the one who looks like a lost soul.’ It may well be a correct observation, but courage and separation seem to shine a light on the everlasting link that is between mother and son, father and daughter, father and son, mother and daughter.

I wonder why we don’t recognise this in families who are separated in realm and veil by bereavement? Is it down to fear or because in general it’s meant to be quite rare and so, perhaps there are just no words thought about to describe the situation? Is it something we care about? Someone put a questionnaire up on the Twitter the other day asking about stem cell donation and whether or not people were signed up and if not, then why not? One of the options to answer was ‘don’t care’ and I was amazed and astonished and perhaps even disappointed to think that there were quite a number of people who had put ‘don’t care.’ Maybe that’s out society? Surely not!

I think it’s about education and understanding. I’ll admit that it’s difficult being bereaved and some days I don’t want to speak with anyone. I want to hide away and before I was bereaved, goodness, I’d find it so rare to speak with someone who was bereaved perhaps of a parent, but a child? That would be unheard of, wouldn’t it? I like to think that I’d always be the one who would speak to and be there for anyone who needed it and I hope that others would see that I care. I do. Immensely. I care so much for people and children and now, in this situation, I feel the need to talk about the fact that it is so important to care. Cancer is indiscriminate and it could happen to any of us. It happened to our family; our Ben. Our Ben died. I mean, that statement, that sentence feels like the most ridiculous reality, but it is our reality.

When a child loses both parents they are an orphan, or when an adult loses their partner, they might be a widow or widower, but for us parents who lose a beautiful child or a sibling who loses their sister or brother, we are known as bereaved, or the one who’s child, sister or brother died. Our eldest commented when she went to an online group that she’d been part of for a long time, that when people came to understand what had happened in our family, for a while she was known as the girl who’d lost her brother. It upset her greatly on many levels for all sorts of reasons.

There are no words to say and no words to call us. Perhaps that might be part of the reason of a myriad of reasons why the feeling of isolation sets in so swiftly?

When I chatted with my husband recently, we talked about how it’s been quite easy in Covid to remain at home and isolated, because we have been fairly used to that when Ben was with us; always trying to stay safe and free from coughs, colds and infections. We reflected on the families we were in hospital with and those who had made it to the ‘bell’ and seen their children ring it. I have mixed feelings about the bell and the pressure to get there; to feel you’ve got through cancer and there’s no more treatment to be had, because Ben relapsed before he had the chance and our consultant at the time informed us it was a ‘milestone.’

The lasting image I have is when we were in the corridor in Southampton and he and I were away from everyone else fussing around and he just looked across to the bell and said, ‘One day, mum.’ I smiled that smile that says, ‘we’re going to do this, but I’m scared’ and nodded, replying, ‘Absolutely, darling.’ He was looking me right in the eyes, right into my soul. We were both trying to protect each other. I have always maintained to my husband that I feel very strongly Ben knew the path he was on. I just think we all hoped we had much more time and in my heart, I wish we had all time.

Hubby and I were thinking about how hard it might be in this situation now with Ben, had he got to his second transplant; and how we’d be worried sick all the time, but agreed, we’d do anything to have him with us, no matter what. We’d manage somehow and even in the hardest of times when Ben was going through treatment, we always seemed to find some excuse to laugh, which filled our hearts with memories that stay with us now in all the bleakness of our devastated life landscape.

We chatted about the families we’d met and could see were continuing with their children, rallying round, doing their best in difficult circumstances, having now headed home with their children after weeks, months and longer in hospital. It’s a marathon in some ways. All of it. It occurred to us then, how hard it might be for them to stay in touch with us, when they were busy in their own situation after cancer. It dawned on us how we’d not seen much of them and then we started to wonder about the fact that in all honesty, it might just be too much for them to stay in contact with us at all.

It was then that we realised how isolated we have become. We are in contact more now with other families and friends who have lost children. We have so much in common still with those families who have been through cancer, but ultimately, we’ve gone that extra step along the path where no-one wants to find themselves.

It’s so scary some days being the parent whose child has died, whether with cancer or another long-term illness, or maybe something that was sudden and unforeseen altogether. We’ve joined a new club, a new family; that of the separated soul or the courageous ones of the earth.

We are warriors extraordinaire. We are fearful for our living children; fearful of life, perhaps more connected to the understanding of how it feels to be truly parted from someone you love, knowing the order is all wrong. We understand the devastation of the moment of realisation that they are never going to experience all you hoped and wished for them in this life. We have an invisible superpower that exceeds so much that perhaps has been experienced by others, because we’ve faced the ultimate fear of losing the child we have been so desperate to save. We’ve faced it, experienced every heartbeat of the crushing disappointment of seeing the light disappear from our darling’s eyes and somehow, we are still here.

I feel so empty some days and so separated even from the families we went through so much with, because I am now nurtured and held by the families who know how it feels to be scared to sit in the silence of their child’s room; who are crippled by grief in a moment when a song comes on the radio, or another child laughs in the room. I am held by the immense strength of my son’s character and personality, that seems to live within me and my beautiful bears. I am held by the laughter and courage of my two daughters, who are facing growing up without their brother.

I didn’t ask for this courage. I didn’t ask for this path in life. I never wanted to be bereaved.

I find my courage every day, knowing I am held by the love of my family; here and my son, separated from me and growing up in another realm.

Today, I walked the dogs and on my walk, took a photo of some crocuses, as they were so beautiful and caught my eye. I notice things more these days. As I stood up, a beautiful feather almost brushed my left shoulder and landed on the ground in front of me. Maybe we are not so separated after all. Maybe we all walk and live alongside our loved ones and maybe our children run alongside us. We just have to remember to be open to the possibility. That way, living might not be quite so scary and the joy can flood in, knowing the connection has never gone.

Feather in my hand, sent by my son xxx