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  • Writer's pictureAmy

Brothers: Joy & Pain

The day Finley arrived was yet another bizarre assault of emotions. He arrived very quickly, as apparently second children are wont to do, within just 40 minutes of us pulling up at the hospital. I’d hoped (yet again) for a water birth, but the midwives turned the taps on for approx. 30 seconds, watched me groan out a contraction, and turned them straight off again. Finn was beautiful, perfect, healthy – and yet we were really fucking sad, totally knocked sideways. It was like Rory had died all over again at 6:02am.

Our psychologist had written us a brilliant birth plan to try and ease us into this very moment. It detailed why we might be anxious about certain things, why we were keen to go home as soon as possible with our live baby, why we might freak out at certain hospital noises, why we hated things like incontinence sheets, how we wanted to talk about Rory by name the entire time, how we weren’t afraid to mention his cancer and his death. And the midwives were brilliant too. They sadly must come across this kind of situation all too often. The one who greeted us knew exactly who Rory was before we’d even arrived, she joked about the fact that my retained placenta was Rory ‘leaving his handbag behind’ – if Covid hadn’t been a thing (phrase of the year...), I could have hugged her right there and then before she’d even delivered my baby. The other midwife who dealt with us had been our teacher at Rory’s antenatal classes, and she handled this link so confidently and sensitively too.


We’d also done some gentle psychological preparation ourselves. I’d begun maternity leave earlier than I had with Rory, we’d spent some ritualistic time washing his toys (pics below) and sorting through his clothes. We’d repacked the changing bag, still packed from Rory’s last hospital admission. Even so, nothing had prepared us for the punch in the stomach that Finn’s arrival would bring. We couldn’t even articulate it with tears. We both sat in the MLU in miserable silence, taking it in turns to either stare at beautiful Finn in our arms or stare out of the window at the Bristol skyline and the children’s hospital just down the road. It’s not that we’d expected Finn to be Rory, or any kind of transference like that. I think it was simply that Finn’s arrival effectively confirmed Rory’s eternal departure.

Finn was the first baby Matt and I had held in our arms since holding Rory. I had last held Rory alive on Christmas Day, but Matt had been the courageous one to carry Rory to the Rainbow Room after he had died. To have a warm, wriggly creature in our arms again was magical, but brutal. We drove home and carried Finn into our flat and the first thing we did was take him to Rory’s side. Rory’s ashes were still in his moses basket, as we had always said they would be until a sibling could arrive to sleep in there. We just sat there and sobbed, hats and coats still on and Finn still in his car seat. And so the lifelong journey of parenting one live child and one dead child began.

I imagine many parents feel an inevitable, bittersweet sadness when packing up their child’s now-too-small clothes. It means they’re growing up; their childhood is slipping through our fingers, never to return. But that’s not why my heart hurts as I pack away baby clothes. My heart hurts because with every bag of clothes that gets zipped back up again, the closer we get to running out of Rory’s hand-me-downs. At the moment, pretty much everything Finn wears, all of his furniture, most of his toys were – are – Rory’s. But I know that the day looms ever closer when Rory will run out of things to be able to pass down to his brother. At the moment, the cot Finn sleeps in was assembled for Rory, but eventually we’ll have to buy a bed for Finn that Rory has never slept in. We’ll have to buy shoes that Rory will never have walked in. We’ll play with toys that Rory has never touched – or that weren’t even invented when he was alive. And of course it's important that Finn has his own things, but it's important he has his big brother too.

I unpacked some 6- to 9-month-old babygrows recently (because Finn is growing like a lovely monster, good lad) and found that a few of them had Rory’s blood stains around the neck and shoulders. We had washed them – we’re not totally uncouth – but if you’ve ever tried to wash blood out, you’ll know that it never quite leaves. There’s always a faint dark yellow stain. I cried, of course (just punctuate every other day with crying from here on in and take that as read), but I could feel my heart soaring too. Here was another, real-life fragment of Rory that I could literally touch. I took one out of Finn’s pile and kept it for ourselves. It’s sat on top of Rory’s casket. Every now and again I take a brief, indulgent moment for myself and Rory and pick the babygrow up under the armpits and cuddle it over my shoulder, as I would with the boys. I’m not bonkers I promise… there must be other grieving parents out there who do this… right?

There’s something about Finn’s wonderful presence that has me seeking out these physical connections to Rory constantly at the moment. Perhaps it’s because Finn is now the age at which Rory was diagnosed – a mental circus which would fill a whole other blog post in itself. Our engagement ring has Rory’s hair and ashes encased, which I find absolutely mesmerising. Even just being near it buoys my aching heart. I can’t bear to listen to Rory’s funeral music yet, or in fact anything by those artists. I’d have to set aside an entire week for crying, and who’s got time for that? (I’m joking. It is totally OK to give yourself this time. I just haven’t summoned the courage or energy yet.) In place of this catharsis, I’ve found myself drifting back to music I’d heard - or sung - in Rory’s pregnancy. I did a concert with Insane Root in the Redcliffe Caves back in February 2019 when I was 6 months pregnant and hearing those tracks instantly transports me back to that joyous, anticipatory cloud. What I’d give to rewind time, ready to meet my first gorgeous boy, not knowing that it would be the inimitable Rory Hall, waiting to imminently change our lives and steal our hearts forever. And of course, there’s Finn himself. He looks far more like me than Rory, who was a carbon copy of Matt, but Finn has plenty of mannerisms that remind us of his big brother, as I’m sure most siblings do.

And then there are things about Finn which break my heart even more. There’s this constant antithesis of elation and pain. I take so much joy in every milestone that Finn sails past, but that joy is shattered when I am reminded that Rory will never pass that milestone. I take Finn to a local playgroup (now it's allowed!) and it's wonderful to watch him blossoming and interacting, but there's always a shadow where my older boy should be. I love nothing more than breathing in Finn’s baby smell when I cuddle him, but then my chest aches remembering that Rory lost that smell in hospital, overpowered by harsher, clinical smells. I feel so grateful for every simple parenting choice: shall we use the elephant nappy or the zebra nappy? Shall we dress Finn in dungarees or jeans today? As soon as Rory was admitted, those decisions were taken out of our hands. Those reusable nappies we’d taken such care to choose couldn’t be used because Rory’s nappies needed taking away and weighing (plus with chemo poos, babies go through them at a rate of friggin’ knots…). All those lovely outfits we had were redundant because he needed poppered babygrows that would allow easy Hickman line access. I had never ‘til that point appreciated what a luxury those everyday choices were.

('breathing-in-their-gorgeous-smell' pics are Rory-Finn-Rory)

The thing that pains me most of all right now is the thought that Finn is already well over halfway through the whole of Rory’s life. Rory’s life felt so long; so epic. That 7 months feels like it defined me more than the previous 27 years. And yet, here’s Finn approaching 5 months. Is it that time stood still once Rory was diagnosed? Were we trying to eke out every moment knowing that it might be Rory’s last with us? Or was Rory’s impact on our world just so mammoth that those 7 months felt like years? I’m scared that Finn’s ageing will diminish Rory’s few months with us, although I feel confident that the passing of time will never reduce their significance.

Perhaps hardest of all right now is the anxiety. I know, I know, I KNOW that nothing we did caused Rory’s cancer, or his veno-occlusive disease. Every oncologist we encounter has effectively tattooed this on their forehead. But it’s So. Fucking. Hard. to accept that you are a totally helpless as a parent. However many balanced, informed decisions you make for your child, whatever lengths you go to to protect them, you ultimately cannot. I’ve said this before, but I hate that we’ve lost that innocence. I wish I could parent Finn with zero fear, or even just rational fear, but it’s a real struggle. I hate that there are inexplicable reasons for childhood cancer, and beyond that, child loss. I know, logically, that many more children live than they do die, but once it’s struck the heart of your family, you can never return to believing the happy statistics.

If you'd made it this far, you must be thinking 'jeez, this is bleak'. Well (sigh) sometimes it is. But I think the harsh truths of these journeys are so important to acknowledge. With beautiful little Azaylia Cain throwing all of this heartache into the public eye, it's important to acknowledge the lifelong, familial impact of every childhood cancer journey. These aren't just heartbreaking stories which pass through your news feeds and then disappear. There are families for whom childhood cancer will touch every waking moment of their lives forever, whether their child survived or died. And the hardest thing to comprehend about childhood cancer is that it categorically does not discriminate. Whoever you are, wherever you are, however much you love and nurture, childhood cancer doesn't care. Sometimes it's in the public eye, and that's horrible and helpful in equal measure, but more often than not, it's hidden behind a terrible veil of inexperience or ignorance. We once stood on the other side of that veil ourselves.

Having said all of the above, don't pity us, because it’s super important to note that we have plenty of happy moments here in our bubble too. We are learning to navigate the ups and the downs that have forged our path since Rory died and will continue to shape it forever. Finn is just wonderful, I love him with each millimetre of my broken heart and I am grateful for every single second with him. The statistics are happy and you will never have to go through this, but God forbid you do, I hope these ramblings are one day helpful.

Lotsa love, thank you as always for reading x

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May 12, 2021

So beautiful Amy. My heart is breaking for you and so happy for you at the same time. Much love.


May 12, 2021

A painful and humbling read, thank you Team Rory for your openness and generosity in sharing these lacerating feelings and thoughts; letting us have a glance behind the veil. So much love, respect and empathy to you.💜

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