“I want to write something really profound”

“I want to write something really profound” I tell my husband. What I think I mean is that I want to write something that will make people understand exactly what it’s like to have a stillborn daughter. Not just what it’s like to have found out she was dead, or what it was like to give birth to my dead baby, or what it was like to bury her; but what it is like to be the mother of a dead child every single day for two years now. And then to know that tomorrow you will still be the mother of a dead child. To know that every day that comes, for weeks, for months, for years, for the rest of your life, that you will always be the mother of a dead child. That you will forever have a break that can’t be repaired – a weight that can’t be set down, only endlessly borne. 

I want to write something that could let people see how Isobel’s death was not an event that occurred in the past  but instead is a never ending process of loss that happens to me over and over, again and again, day after day, night after night. What could I write that would explain that feeling of having left the real me in hospital on 24th June, still sitting in the scan room waiting for a doctor to come in and check on my baby? How can I describe the sense of living life and having to function while only ever being partially, superficially present? Would people be able to understand when I say that I’m so detached at times that internally I have to remind myself to join in interactions? It’s like being a cardboard cut out of a person who looks normal from the front but on closer inspection is only propped up by a flimsy piece of cardboard. Or like being a derelict building that has been covered with a fake shop front to hide the decay inside. 

I keep thinking I want to make a list of all the times I lose Isobel in a typical day, just to demonstrate the daily impact of her absence. The times my mind returns to pregnancy or the days before she died, running and rerunning scenarios where I did something different and she was saved. How I hate myself when I return to what really happened. The times I could vomit when I think of her body rotting in a coffin. The people I see in work and still now my first thought after tens of encounters is how they didn’t acknowledge her death when I came back. The colleagues who are innocently talking about what a nightmare teenage daughters are. Listening to the parents of clients talk about their mourning and grief of having a gender diverse child. The babies that are the same age as Isobel on my Facebook newsfeed that I don’t know whether to hide or not. The questions from strangers about the make up of my family. Baby girl clothes with flamingos on them. Questioning my parenting of Theo. Sometimes loving him with a desperate neediness, sometimes resenting him because he is not her. Not knowing if it’s ok to admit that or not. Feeling guilty for feeling sad around Theo. Feeling guilty for feeling happy with Theo. Being challenged by my husband about any aspect of mothering and my mind hearing “how can I trust you with Theo when you let Isobel die?”. Not trusting my instincts anymore. Never knowing where and when or how I’ll be faced with a trigger. TV, radio, books, and conversations all being laced with danger. This is a window to a typical day’s content. If I made a tally of every moment that is affected by Isobel’s death would one go past without a mark being made? 

If I said that a part of me longs to go back to the immediate aftermath of losing Isobel would people find that strange? That if I could, I would willingly revisit that raw, uncomplicated grief – a time when there were no expectations to function, and nothing to do but sit in despair and feel how close to Isobel I could be. I remember the times I screamed, the times I cried so hard I thought I would shatter and I miss that. I need it but I don’t know how to make it come back. Crying now is brief, and unsatisfying. 

I don’t know why I feel this need to try and make people understand. Who even are people? I don’t know if it would be the same if Isobel had died after living outside my body. The belief that it’s ‘worse’ to lose an older child is one I find difficult to tolerate. Maybe I feel like I need to validate my own grief? 

I like to think that all I want as I write this is to make Isobel exist in someone else’s mind for a little while, but maybe I want sympathy or just any kind of attention? What good does it do though if I were to share what I’ve written here on my Facebook page and get some ‘likes’ and comments. Realistically 90% of them would be from friends who have also lost babies who already live everything I’ve said themselves. 

How would life be different if everyone in the world could know what it is like to be the mother of a dead child? Would it make this life easier? 

I’m still debating posting this, or a version of this on my personal Facebook page so I think I’ll sleep on it! Meanwhile I’ll leave it here. My soundtrack has been Radiohead at Glastonbury (on TV). Amazing. Epic. My spiritual home. Gutted I’m not there. 

Things I’m feeling guilty for…

I’m conscious that I haven’t written a blog post for ages! There have been times I’ve wanted to but I just haven’t made the effort. It seems like what I need to write at the minute is a list of things I’m feeling guilty for, in no particular order!!! 

Things I’m feeling guilty for 

– Ignoring my blog

– I haven’t been to Isobel’s grave since Christmas Eve. This is terrible. I hate seeing her pretty name on the grave. I don’t know what I’m supposed to do there. Am I supposed to cry? Am I supposed to talk to her? I’m pretty sure I’m not supposed to picture her rotting body which is what I tend to do. Should I go more often to get over this association? Should I only go when I really want to? What if that means I never go? 

– I didn’t make any effort for Theo for Easter. I saw all these babies on Instagram with Easter outfits and bunnies and it literally never even occurred to me to do anything for him. Am I neglecting both my children?

– Theo being in nursery long days. 

– My friend told me last night she is pregnant with twins! It was a huge surprise as she hasn’t been with her boyfriend for that long and I thought they might get engaged first. I am happy for her and really excited…but I’m also jealous of her naïveté, her excitement and honestly some part of me almost wants something bad to happen so that she knows how it feels. She was saying about how she has to tell our other friend separately as she has been through cancer and it looks like her fertility has been negatively affected. It didn’t seem to occur to her that I would have complicated feelings to a pregnancy announcement now that I have Theo. But I do. 

– We’re planning Theo’s first birthday. I want to be excited and happy, and I am, but I feel sick about it too. As Theo gets older, Isobel’s death and absence gets starker. Why is she not here? 

– I’ve barely even thought about Isobel’s anniversary. 

– I still haven’t printed out never mind framed, any photos of Theo. 

– Simon and I aren’t getting on as well as I would like. Sometimes we’re fine but other times we are really horrible to each other and that’s more often than I would like. I love how he is with Theo, he’s the best dad ever, but I don’t feel like we have much fun together anymore. This worries me. He’s quite insecure at the minute and says he gets the feeling I’m not ‘in love’ with him anymore. I probably should be making more of an effort to make him feel loved but I kinda can’t be bothered either which makes me worry if he’s right? 

[ Related ]

– Theo was sick and Simon wanted me to take him to the doctor again, I didn’t think it was necessary. Simon said “We have a habit of thinking things are ok when they’re not…”. I took this to relate to Isobel. The night before she died I had a little pain while out for a walk. I was excited thinking it was the beginning of labour. Simon said we should go to hospital, I brushed it off thinking there was no need until the pain was regular / worse. It went away. The next day there was no movement and she was dead. 

– Isobel died. 
– I let Isobel die. 

– I didn’t prevent her from dying. 

– I did this to myself, to Simon, to our family, to Theo. 

– I’m letting it affect me. 

– I’m letting it affect me too much. 

– I’m not letting it affect me enough. 

– I don’t know what to do with this. 

Still Parents

Quite early after losing Isobel I read about healing retreats for bereaved mothers and felt it would be so helpful and lovely to go to one. However I couldn’t find any in Northern Ireland or even the UK. After talking to Simon about it, we decided we could plan our own, with a focus on including fathers and the relationship between the couple after loss. Next came pregnancy with Theo and the idea didn’t have any room to grow amongst my anxiety addled brain! When he was born though I started to think about it seriously again and put it all together, and ‘Still Parents’ was born. I am thinking of it as my fourth baby, my service in work being my first, Isobel and Theo my second and third! 

You can find all the information about the retreat on the Events page of our Still Parents Facebook page. Even if you are not in Northern Ireland, feel free to have a look at the content as I think it’s really excellent and it’s something that could easily be replicated elsewhere. 

So please like our Still Parents page and say hello! 

Our logo with Isobel’s wee feet 💕

The Only Athiests in the Congregation? 

On Sunday past Simon and I went to a rememberance service for babies held at the cemetery where Isobel is buried. We had discussed beforehand if it was likely to be a religious service, I thought because the cemetery itself is a municipal and non-denominational one, and because it was in collaboration with the health trust, that the service would be largely secular. 

Unfortunately for us that wasn’t the case. As soon as we opened the order of service and saw the extent of the Christian religious content, we knew we had made a mistake in going, but it would have caused too much of a commotion to walk out. And so we stayed, in a room full to standing room only of bereaved parents, like us, but seemingly not like us. 

The content included a reading about how all the days ordained for us are written in god’s book before they come to be. If someone was planning this life out, I could really have done without the day my daughter died and those that followed! There was the usual pseudo comforting rubbish about heaven. Yawn. The hymn that really baffled me though was the one about how we know we can always trust god. Experience of all those present would suggest otherwise. Who could trust someone who had either decided to kill your child, or stood by and watched them die when they had the power to save them? 
I wondered how others in the congregation felt about the words they were listening to. Were Simon and I the only ones who didn’t believe a word of the assurances of a loving god who cares what happens to those on earth and the promises of seeing their baby again one day? Are we really the only people who finds the idea of a god who could fail to intervene, letting all these babies die and all these families suffer, completely unforgivable? Is it just us who sees the hypocrisy in praising a god when anything good happens, yet failing to hold them to account for the bad? I wondered if the religious content is something that most bereaved parents want or is there just a lack of imagination to plan a beautiful rememberance service without resorting to biblical readings? 

I always used to wonder how my atheism would be affected when someone close to me died. I wondered if I would be so desperate to believe that I would be reunited with them, that I would start to believe in a god and a heaven. If anything, losing Isobel has reinforced my certainty that there is no god, that religion is a man made, politically driven enterprise which preys on humans’ desire to feel that they can have some control over their lives and to allay fears of dying. I’m glad that I don’t have to try and reconcile belief in a loving god with their failure to protect the most vulnerable and most innocent of their people. The idea of Isobel being anywhere without me would cause me extreme distress, not comfort. I am reassured that I don’t think of her as existing anywhere and yet I can still find her in nature, in beauty. I feel all the more keenly my need to make the most of the one life that I have, knowing that is all there is. I find it tragic to think of other bereaved mothers living their days, ticking time away, believing they will be reunited with their baby someday. 

I fully recognise that for some, belief in a god can be a comfort, and I do not wish to offend those who do believe. I know that anything that helps a person to cope with losing their child is a positive thing. I just genuinely don’t understand how anyone in this century can believe, or would even want to. It’s something I really can’t get my head around. 

I would love to have more, fully respectful, discussions on the topic if anyone feels like commenting… 

All The ‘Me’s

 I’ve always done this weird thing where I view what I’m doing in a particular moment and assess what a past ‘me’ would think if they could have a glimpse in to the future and see that moment. I guess it’s a bit of an evaluative check in with myself to see if the past ‘me’ would be happy with what’s happening in her future. 

Up to the point where Isobel died I was usually pretty confident that past ‘me’ would be impressed with what current ‘me’ was up to. Past ‘me’ who didn’t yet have a long term relationship would have been very surprised and delighted to see me with Simon and getting married. Past ‘me’ who was unsure about my career progression would have been happy to see me working in my dream job. Past ‘me’ living in our old flat would love to see our nice house in my favourite area in Belfast. And so on… 

Now though it gets really confusing because there are too many past ‘me’s! 

So there’s past ‘me’ pre-Isobel who would be amazed and overjoyed to see me pregnant now and would be thinking life must be all good for me. 

There’s past ‘me’ pregnant with Isobel, wondering where the hell my baby is and why I’m pregnant again. This me is incredulous that I’m dealing with losing my baby. That I’m having calm conversations about headstones, fundraising for stillbirth and planning what to do for a first anniversary. 

Then the past ‘me’ after Isobel died who instantly worried about ever getting pregnant again and past ‘me’ who on discovering she was pregnant could never imagine getting to 12 weeks never mind 33 weeks. These versions of me would be relieved to know that there would be another pregnancy and that it would be carried to this stage, and hopeful that there will be a baby to take home this time. 

Now when I do my little check in thing (not on purpose, it just happens!) I have all these versions of myself present in my mind at once and I don’t know what to think or how to feel! It seems like my previously relatively integrated sense of self has just disintegrated, leaving me with this fragmented metal state. It’s all very confusing! I suppose it makes sense to be confused while trying to hold all the emotions of still being shocked and horrified about what happened to Isobel, sad about losing her, glad to be pregnant, guilty about being pregnant, anxious about being pregnant and who knows what else all at the same time! 

Am I the only one who does this past ‘me’ thing? Am I completely crazy? Be honest – future ‘me’ can take it! 

Updates all round 

I thought I’d update on things from my past few posts that have developed or not as the case may be!

 

Firstly and best of all, our little one is still with us and growing well at 22 weeks. We found out that we’re going to have a little boy this time! (I do have quite a spectacular penis picture but thought best not to start sharing that on the internet lest Social Services become concerned!). 

It was a strange piece of news. Mostly I just want a healthy, live baby! However I have to admit that I was a little disappointed. I have always wanted a little girl and pictured myself as a mummy to a girl. Finding out we were having a boy made me grieve a little harder for Isobel and the little girl experience and daughter that I’m not going to have, at least for now and maybe never will. I still feel that way a little but am coming around to the idea of a son and have no doubt that when he is here, heart beating, all of my gender disappointment will vanish. 

We are still being seen and scanned weekly and know growth could still become restricted at any time or like with Isobel the placenta could just stop working without a sign. It’s still terrifying but I am stating to feel little flickers of hope that this might be the baby we get to raise. We are starting to have tentative conversations where we allow ourselves to consider that that baby might live. We are enjoying feeling his movement as it gets stronger and just hoping it all continues to go well. The plan is to have an elective section (recommended so as not to put the baby under any stress) at 37 weeks so we just have 15 weeks to go. It still seems like a long way to me but all we can do is put one foot in front of the other and hope we’ll get there. 

  

Now for an update on my Dad situation! Since thinking and talking about it I felt a lot more understanding towards him. As hurtful as his words were, I know he would never hurt me on purpose and he just doesn’t have the emotional literacy to deal with grief in a helpful way. How he raised a child who grew up to be psychologist I’ll never know!!! Especially with the situation with Simon’s mum I just think life is too short and precious to hold on to conflict, unless of course someone has been deliberately hurtful or abusive. My sister tells me that he is genuinely devastated about what happened to Isobel and he just doesn’t know how to show it. You have to feel sorry for someone like that. 

In the spirit of reconciliation I sent my Dad an email, basically saying I understood it must be hard for him to see me hurting and be unable to help and that might make him want to pretend the whole thing never happened. But that for us that was not a helpful way of coping and really if he disagreed with how we were coping he should stay quiet about it. I also sent a link to this article. I talked about how he’d always been supportive to me and I didn’t want our relationship to be damaged now. I ended it with a question about my taxes and said if he wanted to do something practical he could work that out. His response to all of that?! Two words and a question mark: “tax code?”. It actually make me laugh out loud. A whole email baring my emotions, and that’s the response! 

I still feel good that I said what I needed to and he will have listened to it, although he didn’t feel able to respond in an emotional way, that’s really not surprising as that’s the heart of the problem. So I’ve moved on from that, let it go and hopefully he just won’t say anything about Isobel in future. 

  

As for Simon’s Mum, it’s been confirmed that her cancer will be terminal and the timescale will be a matter of months rather than years. Her poor liver has 8 tumours and really will not be functioning at all. She also has tumours on her pelvis and spine. She has been offered chemo if she wants it but told that it is likely to extend her time only by a month or so. It seems like it might not be worth facing the side effects of the chemo and the impact on her quality of life for the small beneficial effect it might have, but she still needs to decide this. 

Simon talked to the doctors about the baby and they seemed confident that his Mum would be here in May for the baby (hopefully) arriving and that having something to look forward to might actually help her. Simon so wants his mum to pass away knowing that things have improved for us and knowing that he will be happy. We feel even more terrified now – if that’s possible – that something will go wrong with the pregnancy and then the remainder of her time with us will be nothing but negativity and sadness. We’re just trying to stay in the present though and not get carried away thinking about what might happen next. Once we know if she is having treatment or not, we can make plans for some nice family things over the next few months. I’m really proud of Simon and how he is being there to support his Mum and sister, and dealing with all of it on top of everything else. He’s definitely a keeper 💕 

So that’s everything! I am really enjoying being back at work, it is my oasis of calm in a crazy life! Which when said by a psychologist who works with suicidal teens, is a real statement about how crazy the rest of life is!!!! 

Who’s next?! 

  
Since Isobel died I frequently find myself worrying that I am, or someone else I love is, going to die. 

Shortly after giving birth, I felt incredibly weak and faint. I could barely move my limbs and felt like I was going to pass out but my blood pressure was fine and the doctor did a neurological exam which I had no problems with. I think it was just a combination of the pain relief medication, extreme exhaustion and the trauma of losing my baby. I was convinced that I was dying, having never felt like that in my life. I even said goodbye to Simon! After being sick a couple of times and then some tea and toast I began to come round. 

The feeling that I am going to die hasn’t completely gone though. A pain in my tailbone becomes bowel cancer. An ingrown hair under my arm is breast cancer. A headache is clearly a brain tumour. My latest concern is cervical cancer so I have booked in for a smear test even though I’m not due one until next year. I can’t stress enough how unlike me this health anxiety is. The old me (the real me!) was almost too relaxed about everything. Nothing would go wrong, everything would work out fine. Something would need to be hanging off before I would visit the doctor! As a psychologist I would say that I had an internal locus of control. 

  
An internal locus of control means that generally I felt that life was in my control – that if I did everything I was supposed to do, things would go my way. This was mostly how my life had been before losing Isobel. 

Isobel dying despite me doing my very best to keep her nourished and healthy destroyed my sense of control. Now I know exactly how fragile life is. I know that healthy babies can be starved of oxygen and die, days before their due date. If this can happen, of course I can die too. 

Last week Simon was a little late home from work and his phone was going to answer machine. I convinced myself that he had been in a car crash and had been killed. I could picture it. I worked myself in to a total state and was crying when Simon calmly walked in the door on his phone! I have gone from being the person who ridiculed others for their catastrophic thinking, to being the catastrophiser myself! 

  
I am especially worried about my parents dying. My dad turned 70 this year and my mum is 66 so I guess it’s not unreasonable to be concerned about their health but I never was significantly concerned before. My big worry is that they will pass away before I have another child/children and they will never get to meet their other grandchildren. I see the amazing relationship my parents have with my niece and nephew who have grown up with loving grandparents and I’m jealous that my children (if there are to be more) are less likely to have that due to the age of my parents. 

One of my best friends has just recently gotten the all clear after breast cancer treatment. I did not let myself think that she would die but when I got the news that her surgery had been successful I wept and wept with relief. I was so happy for my friend, her husband and her family but also selfishly for me – that I would not have to face any more loss. 

I have told everyone I know that they are forbidden to die. I have told them I could not cope with losing anyone else. However in my new view of the world, I know that anything could happen to someone I love at any time – and it’s terrifying.