My First Blog Post

HELL

Morag died around 1am on Sunday the 5th of May, a bank holiday weekend. I got home and went to bed. My Dad was staying with me so he and his wife looked after my 3 year old son, Jamie in the morning while I lay there staring at the ceiling. I had only slept for about 4 hours. I don’t remember much about that morning. I only remember not having any idea about how to tell Jamie. I didn’t feel anything really. The only other thing I remember is the one thought that kept bouncing around inside my head, “How the hell has this happened?” I couldn’t bear the idea of telling Jamie, how do you tell a 3 year old that their Mum has died? It feels so antithetical to being a parent – intentionally doing something you know will hurt them. Like trying to look at the sun without blinking

Back at the beginning of April, a couple of weeks after we had been diagnosed, Morag, her Mum (H) and Dad (Mc) and I met with a pre and post bereavement counsellor, Angela, that we were referred to by the MacMillan nurses we met at York Hospital. She specialises in helping parents talk to their children about cancer and death. Morag sat there with her notebook taking notes and being her amazing brave self. I sat there shaking my head and hugging a cushion, these meetings were still so surreal. How are we sitting here, having this conversation?

Angela was very nice and seemed genuine in her sympathy for our situation. But I remember being slightly disappointed she wasn’t more shocked at our situation. “Call the papers! We have a 34 year old mother with cancer!” In retrospect, this was a very stupid reaction! This is the pool that Angela swims in every day, she must have seen everything, a whole career of meeting people who have been unlucky. For someone who always took quiet pride in being empathetic about the spectrum of human suffering, I felt so completely victimised and ‘picked on’ by the Universe. It wasn’t just that Morag had cancer, it was the fact it was already at Stage IV, and that apart from some tummy pains she had experienced none of the other red flags associated with the disease. I have never had spiritual beliefs but I realised at a visceral level I clearly believed we lived in a moral, or just universe. I played the game right, I was a good person, how has this happened to us? How completely naïve of me!

I was hoping from the meeting to be given a lot more guidance on what to say to Jamie, and how. If she had given us a script or said “Don’t worry. Where is he? I will sort him out” then I would have felt a lot happier. I didn’t want this responsibility. The overall strategy of what she said was that no one knows our son better than us. We are best place to know how much he would understand and how best to deliver it to him. She said it is up to us to decide if we want to tell him or not, but she strongly advised telling him. She said that kids are very receptive but also very resilient. She broadly advised the ethos of being open and honest with Jamie, but to try our best to answer questions in language he can understand. A lot of the guidance I had read put Jamie in a grey area, where he was too young for us to do nothing, but too old to be able to get any reasonable understanding of the permanence of death or chronic illness.

Angela said “You shouldn’t say “Mummy is very poorly” or “Mummy has a sickie tummy” or “Mummy is going to be taking medicine to help her get better”” The idea being that he could get poorly, or a sickie tummy or have to take medicine. If he were to get poorly, and we said “You are poorly”, then he could think he has the same thing as Mummy. And let’s face it, it’s a pretty solid bet he will be poorly at some stage, being a kid in nursery is like being a petri dish next to a bin. Angela’s advice made total sense and I felt gratitude because I instantly recognised I would have easily stepped on one of these land mines.

Finally Angela asked, “How do you feel about the word – tumour?” What a loaded question! At this I started to cry. I couldn’t bear the idea of saying the word tumour to Jamie- I still hadn’t accepted it myself! What we settled on was the word ‘lump’. So it’s not “Mummy has a poorly tummy”, its “Mummy has a lump in her tummy that hurts her”. It’s not “Mummy is having medicine”, its “Mummy is having special-hospital medicine”.

The skills we were learning from Angela were going to all be about explaining to Jamie that Mummy had cancer, and how to explain the likely side effects of chemo he would see – Mummy tired, Mummy’s hair falling out, etc. It was never in my mind about explaining to Jamie that his Mummy had died.

I remember a few days after we were diagnosed I volunteered to tell Jamie’s nursery the news of our diagnosis. We purely wanted to tell them so that they could help watch for changes in Jamie’s behaviour. Jamie was enrolled in our dream nursery. When we moved up from London Jamie’s nursery changed from a place that had to run drills on what to do if a terrorist or crazy person gained entry, to an organic forest school nursery. His neighbours went from knife crime to a couple of horses and alpacas. His new nursery also were keen to tell us about their new age techniques for ensuring the kids built the right coping skills and support. When a kid bites another, rather than being chided and told off, they drop ‘love bombs’ on them to find out why they are angry and have acted out. The cynic in me rolled my eyes at this hippy stuff but objectively I agreed with her that kids are not born malicious or violent, they are made that way.

When I dropped Jamie at nursery that morning I asked to see R, the nursery manager. She wasn’t in so I asked them to call me and let me know when she was in and if I could have a meeting with them. They seemed concerned but I think, like all nursery management they probably assumed my request was regarding a complaint. When I went in R seemed completely open and ready for whatever would come up. She had worked in nurseries for a long time. I sat down in her office, and said “Something terrible has happened. Morag has stage 4 cancer”. She shot to her feet and came around the desk and hugged me. She pulled up a chair next to me and tears stood out in her eyes. The whole reason for me being there evaporated and she was purely focussed on consoling me. I was in pieces, and in the face of her overwhelming empathy and personal pain at the news I found someone who I could talk to.

After she did her best to give me hope she saw through to the best way she could help us. R can usually talk for Queen and Country and she started “The biggest killer of men under 45 is suicide…” Where the hell is this going? I wondered. But clearly and concisely she talked about how in our culture men are not encouraged to talk about their feelings. ‘Man-up’, ‘keep strong’, ‘be brave’, are all symptoms of a toxic system that encourages men to bottle up their feelings. This side of our culture is completely antithetical to Lil Green Rascals’ ethos. Slowly I started to piece together what she was aiming at, and she was one of the first to talk to me about the importance of Jamie seeing my emotions. Seeing that it is ok to be open and honest about my feelings is one of the best things I could do for Jamie, seeing Daddy cry and knowing it is ok to be angry, sad, scared is the only way I can reassure him that these emotions are completely normal and healthy, and then give him coping skills and tools on how to manage them.

Having a family history of addiction, anxiety and depression I started to see how important her message was. I have never had trouble being open and honest about my feelings. Which I owe in spades to my late Mum.

So back to the day Morag died…

Jamie and I, and Morag’s family all went to Castle Howard, an amazing stately home with huge grounds and play areas for the kids. E had already told his two kids, V, 7, and R, 3. I walked around like a zombie, feeling bereft and staying two feet behind Jamie, unconsciously trying to shelter him. I remember V running up to Jamie and saying something about flowers for Morag to take to Heaven. Jamie looked at her blankly and one of us quickly changed the subject and got V away from Jamie. But this shot across the bow shocked me to my core, and the slow realisation there was no escaping this hit me.

That evening we were all at Morag’s parents’ house. I had made the decision I was going to move into their house for that week, hoping we could all grieve together. And there was no denying that in hell, its better when you are surrounded by people you love. But that evening was horrendous. D (Morag’s brother) and L (his wife) had undoubtedly been two of the best people in the time since our diagnosis. L in particular had given me the tip about deep breathing when you are panicking, and D had previously been very positive about Morag’s chances. Somehow he had run the gauntlet of Dr Google and come out the other side confident about Morag’s prognosis. Either he was blagging it to bolster my spirits or he honestly believed it. It doesn’t really matter, at the time it was what I needed to hear.

One of the first things we talked about was Mc saying D&L might as well go home, “There’s no point being here and moping”. I wanted to scream, I needed them to stay, but this wasn’t about me, this was about them, at least that’s how I felt at the time. Conversation moved onto what we had to do, in regards to the funeral, registering the death, etc. In an aside Mc said “And we need to have the will amended as its only going to two of you now, not three”. Purely childish response from me, but I felt like I was being cut out of the family now. But I quickly dismissed it as fair, it’s not my inheritance – but the burning resentment still simmered. Over the course of the conversation I then said “I cannot bear the idea of sleeping that bed again!” The bed Morag and I had shared when we lived there. “Well you can sleep in the guest room if you like?” Mc said. I think I had been trying to subtly guide the conversation to grief and my loss – it was the elephant in the room. When Mc responded to my query with a purely practical suggestion made me think that I wasn’t going to get what I needed living there. At the time I was completely blind to how Mc&H were in their own stages of grief and denial, and how they were probably trying to be strong to stop their family flying apart. They were doing such a good job of being strong for their family, that I thought they were heartless – oh how wrong I was. But at the time I felt like an outsider, and that I wouldn’t get the support I needed. The problem facing me was I didn’t have any other.

The next day was a Bank Holiday Monday, I came downstairs to see D&L’s suitcase by the front door. E had gone home to try and support his family. Mc&H were shuffling around the house like zombies. Jamie was bouncing off the walls like usual, and I knew I had to get out and do something with him or he would start going crazy. I took him to a play park near our new house and messaged two of Morag’s school friends who were married and had two kids, a 3 year old boy and a 1 year old girl. P&M had experienced their own horror story when they lost their first daughter, Emily, not long after she was born. She had some kind of congenital disorder but had weeks of the roller coaster of hope and loss until she finally died. Some gut instinct made me want to be around people who had also been served a dud hand, as they would know more about what I needed. They had also been the most persistent people trying to kick our door down when Morag was diagnosed, offering to help us with chores, Jamie and emotional support. They said they would be with me in 20 minutes. I took them back to ours and Jamie played with Jack and I was able to sit there feeling shell shocked while they chatted and offered any help they could.

I took Jamie back to Morag’s parents’ house that evening and got him to bed. On the morning Jamie was due in nursery, I hadn’t slept well so tried to placate Jamie with an iPad while I tried to find the will to get up. At the same time I was getting more and more anxious about Jamie going to nursery, he still didn’t know about his Mum. We lived in a relatively small community so I knew I had to tell him before he went to nursery. I wrestled the iPad from him and tried to get him dressed. Jamie had recently developed a habit where if Morag or I annoyed him he would cry for the opposite parent. When he refused to put his socks on and cried for Mummy, I quickly decided that there was not time better than now. I pulled him into my lap. “Jamie, Daddy has something very sad to tell you. Mummy has died”. I was fully expecting no reaction, or as the books said for him to walk off and clam up. But he burst into tears and kept calling for Mummy. I had assumed he would have no idea or concept of what death was. I tried to pull him back to me but he pushed away from me with his legs. He then cried “I want my Mummy”. “I do too darling” I said as I burst into tears. Hcame in and picked Jamie up from in front of me and rocked and tried to console him but he pushed away from her and reached out both hands to me, “I want Daddy!” I took him back and rocked him as he cried. “She’s with the angels, darling” I said. I then took him downstairs and rocked him and put the telly on. CBeebies finally distracted him and he sat there. He looked so vulnerable, red faced and quiet, holding his hand to his mouth. I felt a huge punch of what I can only describe as rage. How dare the Universe do this to my son? I remember in my head Jamie was such an innocent, he didn’t deserve this. And Morag and I did? It just seemed so horrifically wrong and unjust.

Jamie started to ask about going to nursery to see his friends so again I was struck with a difficult decision, I instinctively wanted to keep him as close as possible but also I was barely in a state to look after myself, let alone him. So I took him in. (The first time I wrote this I wrote “I am ashamed to say I took him in”). How could you take your son to nursery, hours after telling him his Mummy had died? Unless you’ve been in my place, I will not take any criticism. We took him in but we told R to let us know if anything happened, she was already aware of Morag’s death.

Over the following week, Jamie asked where the angels were. What? I vaguely remembered in trying to console him I had said “She is with the angels, darling”. Big mistake. Since then I have found that if you say “She is in heaven”, “She is in the clouds”, “She’s gone” then kids have no idea what you are talking about. Ultimately they will think that Mummy has gone to another place, they don’t know the difference between the Cotswolds and Heaven. And by telling them this it opens up questions that APPARENTLY kids will have. Why did Mummy go to another place? Why can’t I go? Did she go there because I was bad? Why doesn’t she want to come back? Can I go to Heaven? Lovely little nest of horror there. Grievers Pro-Tip #1 – try and think about the specific language you are going to use when breaking this news. Try and imagine what someone without your frames of reference could possibly lead them to think. Grievers Pro-Tip #2 – you will fail at Pro-Tip #1.

So what would I say to someone who is fretting about how to deliver news like this to their kids? What was the best advice I can pull out of the myriad of support I had regarding Jamie?

Don’t. Be. Hard. On. Yourself.

You have more than enough on your plate without adding a steaming pile of guilt and anxiety on top of it. You are going through hell, and the scary thing is how resilient kids are, especially the young ones. I spent weeks and weeks fretting and beating myself up about what I said to Jamie. But you know what? If anyone wants to say they think they could have done a better job, then let them. No-one asks to be the parent who intentionally hurts their kids by delivering the most crushing news. Someone in the palliative care team had given me a selection of books to read with Jamie, designed for his age. Grievers Pro-Tip #3 – read these books alone before reading them to your kids. I picked up a book called “Missing Mummy” and asked Jamie if he wanted to read it. He said yes, so I snuggled up with him and opened it. I didn’t make it past page 4 before my throat closed up and my head felt like it would explode. Jamie got bored and wanted to play something else. This has become the major theme of Jamie’s grief. I try and make sure he is aware of his ability to talk to me at any time, and I keep re-enforcing the idea that Mummy didn’t want to leave him, Mummy loved him more than anything, Mummy didn’t leave because of anything he did, Mummy’s love never dies, Daddy is sad, Daddy is angry, Daddy misses Mummy, and all these things are totally natural. I will write much more about Jamie’s journey through grief, at the moment, just saying what happened over 48 hours is enough.

It was the day I read Missing Mummy to Jamie, I decided I needed more support, and quick…

This is the first post on my new blog. I’m just getting this new blog going, so stay tuned for more. Subscribe below to get notified when I post new updates.

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