#DiversityInLoss – Learning to accept and tolerate my grief

What is often termed #LifeAfterLoss in the online loss world, is a the myriad of ways that people journey through life in their aftermath of devastation. This is so different for everyone – we all have different influences, perspectives and personalities. In this piece for the #DiversityInLoss series, Fran talks us through the different ways that she has navigated her grief; whether thats in how she’s felt supported by the online community, to discovering the power of music, and allowing herself to explore new relationships.

Please welcome her, and her daughter, Cali to the series…

I’ve just finished watching the film ‘Mary Shelley’ on Netflix starring Elle Fanning. I wanted to see it when it was advertised and since finishing up at my most recent job, I finally had the time to watch it. I didn’t know anything about Mary Shelley prior to watching the film, but some time into the film Mary’s baby girl, Clara, dies. After Clara’s death, you can visibly see Mary’s mourning and grief and how she is more withdrawn and quieter than before. You also hear Mary, through her writings, acknowledging the change that has been stirred within her. As the film goes on, you see Mary pushing through barriers, these being both emotional and social. She writes ‘Frankenstein’ and we begin to see Mary find herself again which enabled her and came hand-in-hand with her fulfilling her potential, which was something she had always hoped she would do. It may sound strange, but for one of the first times since my daughter’s death in 2017 I was finally able to relate to someone on a deeper level when reflecting on my loss.

My daughter Cali was born on the 22nd of January 2017. Our understanding so far is that Cali was most likely fine and well until probably a few months before September 2017. On the 2nd of September 2017 Cali was admitted to Alder Hey Children’s Hospital in Liverpool and was diagnosed with Dilated Cardiomyopathy. This meant that the left ventricle of Cali’s heart was enlarged and the walls were thickened, preventing the heart from pumping efficiently and causing Cali to have heart failure. Cali was given medicine at Alder Hey on the cardiac ward for about a week until she was unable to breathe and was placed on the PICU on the 12th of September 2017. Cali needed a heart transplant and so Alder Hey quickly began corresponding with Newcastle Freeman’s Hospital and Great Ormond Street in order for Cali to be transferred to either transplant centre. This would have enabled Cali to receive the treatment she needed to keep her alive until transplant. However, a bed never became available at either hospital and Cali passed away on the 16th of October 2017. I’ve not written like this about Cali, my grief or how I have and continue to navigate myself through loss as well as my experiences surrounding these things since January 2018. I started writing blog posts when Cali was in hospital as an effective way of sharing Cali updates with friends and family and the writing helped. I found it quite therapeutic and easy to write as I was writing in ‘the now’ so my words were raw and genuine. Writing this piece by remembering and reflecting back on things, as well as acknowledging my feelings now, is appearing to be quite difficult. It’s taken me three days to get this far. So… if my writings here are a bit shoddy, with rubbish paragraphing, rubbish grammar and punctuation and is just all over the place, then apologies. It it was it is.

Before returning to work in January 2018, I used my time trying to function again when I was on my own; caring for only myself, during social situations and without the comfort blanket of Cali. I don’t know how many other people can relate to this, but I remember it was only when I started being around others in social situations after Cali passed that I realised I didn’t know what to do on my own anymore. I didn’t know what to say or really, how to be ‘me’. Reflecting back, I don’t think I knew who ‘me’ was anymore. I remember the first time it hit me thinking, ‘Why can’t you sit properly Fran?! Just sit normally!’. I soon realised it was because I didn’t have a baby on my knee or on my boob. I didn’t have that little person taking the attention and basically creating the conversations I would have. I don’t remember really seeking any answers or looking for clarity after Cali passed away either. I always say this was because I had all my questions answered when we were at the hospital. I knew all the information regarding her illness, her state, what might happen and I prepared myself for what most likely would happen and subsequently, what did. I found this a comfort after Cali passed because I think having time to psychologically and practically ‘prepare’ myself meant I could be in control of myself and what was happening in some way. So, when Cali did pass and I returned home after her funeral it meant I was going to begin carrying out my ‘If-Cali-goes plan’ that I had created in the hospital; join the gym, see friends often, do whatever I wanted to do if I could do it.

I am someone who likes to understand things the best I can, including understanding myself and my emotions. So, I also thought following other bereaved parents on Instagram and being able to relate to them, as well as carrying out my ‘plan’, would help me navigate myself initially through my loss. ‘Advent to Remember’ really really helped me that first year; It was soon after Cali had passed away and I felt it was a lovely way for any bereaved person to share their loved one with others. I was able to relate with people and share my daughter. Soon after this though I did begin to read statements from other bereaved parents on their accounts telling me how I ‘would’ experience certain things due to the loss of my child. Now.. I can definitely relate to some of the things I was reading; awkward conversations, people avoiding mentioning my dead child, phrases people say to other parents of living children like.. ‘You’ve kept them alive this long’. We know the list goes on. But what I was also reading were statements telling me that my grief would make it so I would find it hard to carry on and to live my life, whilst other comments told me my friends would let me down. When I first came across these comments, I was in the very early stages of my loss and I became apprehensive, waiting for these things to happen; for my loved ones to let me down and for my life to become unbearable. I’ll be honest, maybe I’m lucky, but neither of these things happened to me. In my opinion, I did read more positive and life affirming comments at the time but reflecting back it makes me think about when celebrities say that the negative comments they read stand out to them more than the positive ones; I think that’s what happened for me. I know that these comments and statements may be true for some bereaved parents. You may lose friends. You may find it hard to carry on and live for a period of time, or longer, or shorter. But I don’t think these comments should be generlised, because they are not true for everyone.

I also read comments that were expressing (what felt like) anger towards people who say “times a healer” and who acknowledge the whole.. “you wouldn’t be where you are now if ___” comment. I think more often than not, people say these things to the bereaved with the best of intentions; because they think they’re helping in some way or because it’s the only thing they know what to say. Not because they want us to feel more grief or pain; not to be ignorant or to brush off our loss, but so they can try and offer some words and help in someway. How often after the loss of our children have we heard from others the comment – “I have no words”? At least the ‘times-a-healer people’ are saying something. These people are making comments, that as bereaved parents we may question, but they’re having a conversation with us about our loss, our grief and more often than not, our children. Which I think a lot of us would agree is what we want. We want to talk about our children. We want to acknowledge them and remember them.

I can appreciate and empathise with those who make what I feel to be quite generalised comments when it comes to child loss and the grief that comes with it. I too have felt, and continue to feel bitterness, anger, resentment and jealousy towards people at times. I’m sad to say that I feel this more as time goes on, whilst also feeling guilt from time to time. This guilt comes from acknowledging these parents on Instagram who express their anger or frustration and through feeling different to them. The statements being made show me these parents are really fighting for their voices to be heard when it comes to child loss and their children. Occasionally I will then question whether I’m supposed to be doing something – ‘Am I speaking up for Cali enough? What should I be doing?’. I think that wave of guilt I feel occasionally is led back to the (most of the time) locked ‘Mum Guilt’ box; through appreciating that I have never needed to defend Cali, my loss or my grief and through acknowledging that I have continued to build my life in the way I have, whilst always keeping Cali’s memory alive in my everyday. I don’t know if anyone else can relate. Maybe I have been lucky; I know I’ve certainly found it more helpful welcoming comments and opinions made by others (whilst helping to educate them if needs be), rather than letting their comments get to me. Moreover I’ve appreciated that people are usually saying things with the best intentions; appreciating further the fact that people can say things, quite bluntly at times, because they can’t comprehend what we have experienced ourselves due to them not having lost a child. Thank God!

Even though I have not lost friends during these past two years in the way I read about, some relationships in my life have changed. Most likely, through me letting people down, rather than it being the other way round. I realised I needed to change certain things in order for me to grow and navigate myself in the way I wanted to in my life. As well as having my ‘If-Cali-goes plan’ to help initially navigate myself through my loss, I also had the support of people around me if I needed them and their understanding when it came to me doing things independently. This is still the case today but through that first year after losing Cali I visited friends, had little breaks with them, went to a lot of gigs and followed and listened to a lot of musicians. The more gigs I went to, the more music I listened to on YouTube which then would direct me to other artists. I filled most of my spare time alone listening to music; in the car, in the house. Music definitely became a drug for me. I know it sounds quite cliché, but honesty, music brought me back to a good place when I was in a rough one and it definitely kept me in a peaceful state of mind. Just to give a bit of an example: Earlier this year I was in my final study week of my degree I travelled to university where I would stay for one week each semester. I was sharing a room with two other girls and we were sharing cars, so I barely drove. By the end of the week I remember feeling a bit in-on-myself, quite hostile and ratty in my head and quite heavy. I drove home and for the three hour car ride I was listening to music. I soon realised when I got back that my mood had definitely been affected because I hadn’t listened to music for five days as well as being made to feel lighter and better after the music filled car journey home. Since then I’ve used music (mixed with a bit of exercise) as the first port of call when I’m having a rough day; it’s been working so far.

I think initially my hope was to be able to relate to other bereaved parents in order to navigate myself through my loss, but actually what I came to find was that for me it was music that I was able to relate to; the lyrics and the raw emotion in what I was listening to. An artist I came to find soon after Cali passed away was Dermot Kennedy. One morning I was sat and his voice came blaring out of my phone as I scrolled through Instagram; he was a ‘suggested artist’. His music and poetry and passion.. it’s all very beautiful and real and raw. It’s become very relatable for me. In his song ‘Lost’, he sings;

‘I’ve learnt in love and death we don’t decide.’

Not as deep of a line as some of his others and such an obvious understanding of things when you think about it. But as a Mother who has lost her child, as well as an individual who has gained people in my life this last year, I’ve just found this line even more relatable. My child died. It’s against the natural order of things. In death, I certainly did not decide. And, if I’m honest, in love I did not decide either; not only because I personally don’t believe we decide who we love (I think it is a natural and unforced connection that happens), but also because I had no intention of creating any lasting bonds with any new people. A point came after Cali passed away, maybe before, when I realised I didn’t want to make any new relationships with people. I didn’t want to potentially cause anyone pain like the pain caused for those who had been through what we had all been through with Cali. Even when Cali was in hospital, I remember her Dad and I both agreeing that we wished at times that everything only had to affect us, because of the worry and pain it was causing others. We always had the information we wanted as we were in the midst of it all, but for those at home the sickening worry must have been constant. All the hurt and pain caused by Cali’s illness and passing just shows how many people loved her, but I remember thinking that to not make lasting relationships with anyone new would mean that if, God forbid, a similar situation happened again, then no one new would have to experience that level of worry and heartbreak. I don’t know if that makes sense. I can’t really make much sense of it myself which makes it harder to come across clearly, but all I knew was that I didn’t want or need to make any new relationships with anyone. Even though some relationships changed for me, I still felt the same. To only have to worry about myself and care about those who’d experienced Cali’s life and death with me; I thought that would have been easier.. But it hasn’t really worked like that. Instead I couldn’t help but build relationships with people I came to meet and socialise with; no matter how diverse this seemed to be. And so, In love, I did not decide. Even though I wouldn’t change it now, it has been difficult helping new people around me understand when I’m grieving which I’ve not been able to make much sense of either. At times this has led to a lot of self hatred but further self-reflection; I need to communicate more. My confusing thoughts on these matters I think are just a clear indication of my grief. Most of the confusing thoughts I have are a clear indication of my grief, which over the past two years I have come to accept and understand; leading me to not be so hard on myself when my grief raises it’s numbing head. I think initially I fought a lot with myself and with the people closest to me, but as I’ve begun relaxing, socialising and finding my identity again, I have been able to accept and tolerate my grief, the ways it manifests itself and the ways I express it.

At the end of ‘Mary Shelley’; after Frankenstein has been published, after Percy Shelley explains the story to be Mary’s work and after Mary appears to have ‘found herself’ again, she says to Percy..

“But if I had not learnt to fight through the anguish, I would not have found this voice again. My choices made me who I am.”

My choices have definitely made me who I am. The realistic attitude and thought process we had in the hospital helped me build resilience. This resilience supported me in creating a small but effective ‘plan’ in case Cali passed. This ‘plan’ alongside the support I found from family, friends and music helped me in getting through those initial few months, which gave me the confidence to return to full-time work with children as a toddler room supervisor. From this I gained friends and could socialise again, helping me find parts of my identity which I’d lost. I began to know what I needed as an individual and for my future. I made changes which led me further down my own path and to where I am today. Without all this, I wouldn’t know the people I know now. I wouldn’t have the new working role I find myself in. I’m happy that I can say that, on top of the hope I’ve always had for my future, I’m now in a position again where I can start planning for the future I want for myself. It’s felt like a fight a lot of the time. At times I’ve been selfish and it’s all been through anguish. But I am still Cali’s Mum first and foremost, and all my choices since Cali passed have made me who I am and are continuing to do so. My life is good. I’m lucky it’s good. I’ve made it good; I had to. All I can do and have been doing is continue on in a way that means I can make my life what I’d like it to be. And all I hope is that others who are trying to navigate themselves through any loss are able to do the same.

Fran x

You can read more from Fran, here.