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  • Writer's pictureAmy

Six Months On

Updated: Aug 6, 2020

I looked back recently at my 'Welcome, Grief' post that I wrote about a month and a half after Rory died. It felt like yesterday that I'd written it, but then it feels like yesterday that I held Rory in my arms. Time can be simultaneously kind and cruel like that. I noted my reflection, back in that post, that I couldn't imagine even making it through a couple of hours without Rory. And then, this Friday evening just gone, we realised it was 10th July and that 'tomorrow' (as it was then) would be six months to the day that we'd lost Rory. I was astounded. It has to be said that Covid and lockdown have naturally played havoc with all of our lives in one way or another, and everyone's perception of time has been totally skewed by the last few months, but I cannot fathom that it's been half a year without our boy. It led me to contemplate how my grief has changed in those six months. If you're grieving (who isn't?), I'm sure there are things you'll recognise, and if you're lucky to not be grieving right now, or to be at a very different stage in your own grief, I hope it's insightful, and that you might nod along in solidarity.

I'd also like to include a side note that this is purely a personal experience of grief. If I've learnt anything over the last three years, it's that every single journey of grief is different for every person travelling through it. For example, writing really helps me to get through certain things, whereas for some people I know that are grieving, writing things down is the last thing they want to do. People talk about the 'stages' of grief, which seem to be partially relevant, but equally totally wrong. Pigeon-holing grieving into stages makes it seem manageable and predictable, and I can tell you now that grief is categorically neither of those things. A friend - one who is no stranger to dealing with grief - sent me this 'ball & box' analogy, which has been the most resonant metaphor so far.

ANYWAY. Back to the past six months. These observations are in no particular order, and to no particular amount, which leads me to point 1...

1. My grieving brain has ZERO order. It's quite a sporadic, haphazard place at the best of times, but grief has obliterated any logic that was ever going on in there. I can just about be strategic during working hours, but outside of that I couldn't tell you where the teabags live, or what my PIN is, or where I left my phone. But that's fine - I've learnt not to get frustrated at its messiness, or its lethargy, and everyone around me has been patient and forgiving...or made a bloody good show of being those things!

2. And my brain is like this largely because it's ALWAYS thinking about Rory. I was worried that I'd need to make a conscious effort to think about Rory, and was anxious about going back to work, for example, because that would mean filling my brain with things that AREN'T Rory. Turns out the grieving brain doesn't work that way - not for me at least. I am thinking about Rory every second of every minute of every hour of every day. Sometimes it's very conscious, sometimes it's quite a discreet narrative just ticking along underneath other thoughts, but it's always there. I'm on a work call, but I'm thinking about Rory; I'm laughing with a friend, but I'm thinking about Rory; I'm watching TV but I'm thinking about Rory. And for that effortless immersion, brain, I am immensely grateful.

3. On that: watching TV is dangerous. Listening to music and reading books is dangerous. Suddenly all those past times that seem relaxing and second nature are full of unexploded mines and heart-stopping pitfalls. Sometimes you just need to switch off, stop right there and get away from them and sometimes you just need to let them attack you and endure it. You kinda just get to know what it is that you need in that moment. (And let's face it, babies and/or cancer and/or death make for gripping narratives, so they're fairly unavoidable...). There are certain tunes that we played to Rory in PICU and at Rory's funeral that I still can't listen to and won't be able to for at least another six months, and I know that when I do hear them it will be really fucking painful, but I also know that that is what I will need in that moment. I think you just have to go with what feels right. Lovely friends have warned me off watching or reading certain things that they're concerned might contain triggers, which is both thoughtful and wise. And at other times, I've really wanted to be reminded of childhood cancer, or hospital wards. Sometimes I've gone actively looking for books that talk about medicine, because it's weirdly comforting, or films that focus on loss, because at the end of the day, loss is part of life and at least if it's fictional, it can't be as hellish and harmful as what we've been through in reality.

4. Same goes for photos and videos. Sometimes all Matt and I want to do is spend hours scrolling through photos of Rory. Those hours will be great; full of joy in our reminiscing. Other times we'll begin the scrolling, get through three photos and dissolve into tears. And then, more often than not, I find that I can't look at photos of Rory for a day or two. But I know that the wheel will keep turning, and once those painful, shut-down days have passed, I'll open a photo album and begin smiling again.

5. So yes - sometimes medical environments have proven comforting over the last six months. We love walking up to the children's hospital and we were even allowed in once during lockdown, which was like being welcomed to a sort of second home. I hope that we'll always feel that way. We experienced almost half of Rory's life in there and there were some genuinely joyous moments. He survived surgery in there, he was discharged from HDU, he met Father Christmas. He laughed in there, he touched so many hearts, and - most importantly for him - he had all the boob he could possibly have wanted in there. We also undeniably experienced some of the worst days of our lives in that building too. Rory was diagnosed with the tumour in there; we were told it was cancerous; we were told there was nothing more the team could do to save him; he died in there. And I don't think we'll ever, ever be able to let that go. Room 9 on PICU will forever hold a significant place in our hearts.

6. Medical environments have also inevitably scarred us with a certain amount of trauma. Rory's team were phenomenal and alleviated all of the terror that they possibly could, but PICU especially is a terrifying place. You're suddenly as helpless as you've ever been for your child and you can't even stay by their side 24/7 let alone understand how to care for them. A PICU mum wrote a beautiful blog piece for the Grand Appeal (find it here) where she describes feeling the dread mount as she walked up the stairs to Level Four of the BRHC and it was so hauntingly true. That sinking feeling as you walk up the stairs, the adrenaline gathering force as you wait for the tireless team to answer the buzzer, and for us, the long walk down through the constantly moving ward to Room 9, desperately trying not to get our hopes up at Rory's stats on the screen above his door, but looking up, squinting from as far as away as possible and secretly willing an improvement with every fibre of our beings. Covid, unfortunately, hasn't helped to ease this vague form of PTSD. So many programmes and news pieces with those unmistakable beeps that you know belong to a ventilator without even looking and make our hearts fly into our mouths. It also still takes a good 20 minutes to recover from the shaking that floods my system whenever I receive a 'No Caller ID' phone call. We half-jokingly mentioned this to one of Rory's PICU consultants, who invited us back into PICU once Covid is long gone (imagine!) in an attempt to ease this fear a little. He said that many parents find that the horror of those sounds never leave them.

7. Going back to work has been beyond helpful. As I said, I was really anxious about returning to work. This was partly because I thought that meant that I couldn't think about Rory constantly (impossible) and partly because the idea of going back into that building knowing that I'd lost my child when I last left it just 8 months earlier glowing and ready to become a new mum was heartbreaking and impossible to stomach. And yes, stomaching it was a hard thing to do, but I'd done much harder things in the few months before that, and if I could hold my son's hand while he died, I could absolutely do him the courtesy of walking up a staircase and sitting at a desk. Turns out I only needed to physically walk into that office for another two weeks, because lockdown had other ideas (hahaaa) but never mind: I'm glad I did it, and that's a hurdle (I sincerely hope) I never have to claw my way over again. And both of our workplaces have been genuinely awesome. Not once have I felt awkward about being 'the one who lost a baby'. It's been a mercy to be able to impose some order and logic in my brain for at least a few hours of every weekday, and I'm so grateful to have something to take me away from wallowing in my grief.

8. Emotions are weird. Weird and highly powerful. They guide us far more than we think they do. Matt and I have both experienced all manner of emotions in the last six months. We've stumbled around not understanding why we're mardy and more often than not, the crux of the matter is that one (or both) of us just needs a really good cry. Sometimes that crying has been behind closed doors and sometimes it's been in the middle of Asda. It really doesn't matter to us, or - it turns out - to anybody else. On the other hand, there's been a lot of laughter in the past six months too. There are so many videos of Rory that fill us with joy; videos that we can't help beaming at when we watch them, even though they're yet another reminder that he's not here anymore. We're also totally fine making jokes with oncologists. You've gotta laugh, right?

9. In a similar vein, we LOVE being around Rory's stuff. We've learnt never to be afraid of confronting things that make us think about Rory. His toys are still all over the flat, his baby bouncer is here in front of me in our living room, his ashes are in his moses basket which is still next to our bed (guarded by Terry, obviously). His 6-9 month clothes are still in their drawers ready to be worn and his nappies are hung next to the changing table ready to be pooped on. There are photographs of Rory everywhere you look in our flat. We talk to him at home, at work, in shops. Engage us in conversation about Rory and we could wax lyrical all day. And it's honestly so lovely: we wouldn't have it any other way. Of course it's painful too - there's a hospital bag that we haven't yet found the mental strength to unpack and we don't want to empty his changing bag until there's a positive reason to repack, but we'll deal with that in time. For the moment, total absorption in Rory's world (which has been our world since 26 May 2019) is the only lens through which we want to look at life.

10. Along with all the stormy, teary emotions steering our daily lives, Rory's death seems to have also brought us a new sense of calmness & perspective. Nothing makes you realise how short life is like losing a child. So we should get the fuck on with it and live it. Rory's life was short, but FULL of joy, and yes, we want to spend time grieving and reflecting, but we also want to spend our precious time making memories and living as happily and as wide-eyed as Rory did. As long as we're healthy and our loved ones are healthy, then why stress? Everything else can be dealt with.

11. Quite a few friends and professionals have asked about grieving during lockdown. Undeniably, it's not been the easiest of experiences. Being far away from family whilst going through such emotional pain has been tricky, and not being able to hug or even make physical contact with others feels particularly alien whilst trying to cope with such loss. But it's also been strangely liberating. Every member of Rory's family is dealing with grief in their own way, and the literal distance between us all has kind of been a gift. It's meant that we can process things in the way that works for us individually. Matt and I have relished the chance to lock ourselves away with Rory's memory and all of his things. We've been allowed this chance to wallow in our grief without needing to put on a 'brave face' and we've worked through a lot of emotional shit just the two of us. I really think that we'll emerge from the other side of this quite thankful for the residual positive effect that lockdown has had on our grief. We are also painfully aware that had Rory's battle with cancer continued into lockdown, or had he been diagnosed much later, it would have made our memories with him very different. The hospital restrictions would have meant that only one of us could have been with him, for one. And on top of all of this, I think it's important to acknowledge that lockdown has been difficult for everybody. We are both healthy and that is one of many small things to be grateful for when the world is facing so much sadness right now.

Thank you (as always) for reading. If you would like any further thoughts or support, The Good Grief Trust are really great (they also have a Covid-specific helpline), so are Cruse, and CLIC Sargent have some very helpful support signposts here. Please also message us here if you want an ear - we might not be able to help, but we're very happy to listen and show solidarity.

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