It’s absolutely bonkers that it’s been a whole year without you little Bean.
We stood outside PICU in the little courtyard behind rooms 9 to 11 and stared at the full moon as 10th January 2020 turned into 11th January, the worst day of our lives. Of course we didn’t know for certain that 11th January would be the worst day of our lives, but breathing in the night air and staring at that beautiful moon (which was a particularly special one for all you astronomers out there), I had a horrible feeling in the pit of my stomach that the end was nigh. It was getting harder every minute to ignore the creeping dread and remain staunchly positive. Rory had reached the most critical state yet and everything was gradually looking less and less reversible. I found a text to my mum the other day from 10th January where I’d said I wished I could give Rory all of my breath. It was getting that desperate. We were maxing out all of our options, the top of our three heads brushing dangerously close to that ceiling of care I wrote about in April.
We took it in turns to sleep in Rory’s bed with him overnight. Morning came on the 11th and the face of the lovely, normally upbeat nurse who’d joined us for the day shift said it all really. There was a general sense that ‘this was it’. Rory had very little time left with us.
We woke up on the 12th absolutely broken. That doesn’t even do it justice – broken is too gentle a word; there are no words to do that feeling justice. We were powerless, purposeless, exhausted, empty, devastated, angry, upset, lost. We didn’t know how to make it through a day, let alone a week. But here we are one year later. It makes me somewhat angry to have survived 12 months without Rory, but I'm proud to have made it relatively unscathed and with his memory as present as it was on day one. I really hope he would be proud of us too.
Which leads me to what this post is about: it’s a giant THANK YOU. We would not have got through that week, that month and this whole year without EVERYONE around us. In the poem I read at Rory’s Celebration (included below in case ya missed it), the line that choked me up the most was ‘the knowledge that if I lift my arms in need, those I love will pick me up’ because I looked up at all the wonderful faces in front of me, knowing that each one was ready and willing to pick us up from this utter heartbreak. A wonderful, selfless army of people lifted us up on 12th January and carried us through this first year without Rory. We read through the sympathy cards that so many folk sent us the other day and were overwhelmed by the extent of Rory’s reach, the kindness and generosity of our friends and the power of people’s words. There are too many to name all individuals, but please know that if you’re reading this, you are most likely included. So here goes… this is for you.
THANK YOU:
To Rory’s family – near and far. You’ve suffered a fucking great loss yourselves, yet you’ve still gone above and beyond to support us two in your own, different ways. And to those family members who aren’t technically blood relatives, but you know you’re family nonetheless, this is directed at you too.
To our friends. You hear of people buggering off when someone’s grieving, unable to deal with it, or know what to say. Our friends have been phenomenal. Friends from deep in our past all the way up to friends that have just come into our lives this year. To the friends who have asked the really difficult questions and endured the even more difficult answers. And a special thank you to all of those who came to Rory’s celebration on 7th February and listened to us trembling our way through his whole story.
Particular thanks to the lovely friends who put together an amazing ‘escape fund’ for us. Sadly Covid has meant we’ve not yet been able to use it…but we have great plans for 2021! (Don't we all?!)
To the fellow parents. We’ve made lots of connections (mostly virtual – thanks Covid…) with other parents who have lost children, whose children have been in Bristol Royal Hospital for Children, or who have/[had] children with cancer. Your stories, photos and messages of support keep us going constantly; you understand better than anyone and you are all inspirational.
To Rory’s clinical team (bereavement team included). You’ve answered our countless, often silly, questions and endured our ongoing emotions with sensitivity and patience. We know you couldn’t save Rory but we are still so grateful for everything you tried. Thank you for continually remembering us and him. A special thank you to Rachel, Jaydene and Niamh for always checking in and going above and beyond, even now.
To our psychologists. You’ve heard it all really… thank you for listening and helping us to talk through this shit-storm of a year. You made Rory’s death that bit more bearable, and Finn’s birth that bit more enjoyable. We’ve learnt an awful lot about ourselves through you.
To everybody who’s raised money in Rory’s name. Isaac, Jo, Galina, Cassie, Christian, Fizzy, Katy & Eddie, Emily, Jack & Charlotte, Vanessa, Charcoalblue, Mike, the Hoop Brothers. And to everybody who’s been inspired to do something because of Rory, whether that’s taking up running and self-sponsoring, donating something you’ve saved on your now non-existent commute, encouraging others to give blood – whichever way Rory’s motivated you. Your efforts have been incredible and have meant the world to us. You’ve made a real-life difference to families facing a child’s cancer diagnosis or hospital admission. And to everyone who’s sent us story ideas – we haven’t forgotten these, it’s just that Covid’s obstructed the plans somewhat… watch this space!
To everyone who’s given money too. Thanks to you, we’ve raised nearly £7,500 for CLIC Sargent, over £2,600 for the Grand Appeal and nearly £2,350 for CCLG. That’s almost £12,500 in total in ONE YEAR.
To the midwives and FMU team who’ve guided us through the rocky psychological journey that was Finn’s pregnancy – to Kirsty especially, and the midwives who were there at his birth. You talked about Rory the whole time and understood that we weren’t as excited as we might have been and for that we are immensely grateful.
To our health visitor, who has been great this past year.
To all the charities who helped us before and after Rory’s death. The Grand Appeal, CLIC Sargent, CCLG, Macmillan, The Isabelle Baker Fund, Sam Pilcher Trust, Dexter’s Odyssey, Beky and the 500 Reasons gang, A Siblings Wish, Ben’s Epic Journey, The Brain Tumour Charity and Family Fund. A special thank you to Anna, our CLIC Sargent social worker, and everyone who organises the coffee mornings, even virtual ones.
To everyone who’s sent a text, a card, an email, a letter etc. It’s been a shit year for everybody and we are humbled that you’ve taken time to remember us on top of that. It might seem like a tiny thing (and we’re very sorry that we’re generally rubbish at replying quickly), but every little check-in goes such a long way.
To everyone who included Rory’s name in a Christmas card. Our hearts are glowing.
To the funeral directors at Thomas Davis and our humanist celebrant who quietly made Rory’s Celebration absolutely everything we wanted (and needed) it to be. And the wonderful care you took of us afterwards when we needed some ashes extracting. And the fact that one of your private ambulances followed us from BRHC as we drove Finn home from St Michael’s (poignant, right...?)
And another thank you to everyone else who made Rory’s Celebration what it was. Amanda, Jim, Elaine, St George’s, Lucy, Sarah, Fuzz, Phillippa and the photo team, CFT, Hart’s and Vale Garden Flowers.
To Fiona Miller for the perfect fingerprint pendants, and Milk Diamonds for our gorgeous engagement ring containing Rory's hair and ashes.
To Simon Windmill for the beautiful photos he captured of us back in September in memory of Rory and anticipation of Finn.
And finally from me: to Matt, Finn and Rory. I’d say I don’t know what I’d do without you, but sadly I do. All three of you keep me going every day.
Digging this ol' poetry chestnut out below to finish – take a moment to read if you fancy. It’s the poem I wrote for Rory’s Celebration. Clare (our lovely celebrant) read it at the crematorium, and I read it at St George’s in the afternoon.
And even if you don’t read the poem, thank you for reading all of the above. If you have a moment on 11th January, or this coming week, please take a little time to send some love to our boy Rory Hall. He’s fucking awesome. Wear something dinosaur-y, throw some money in one of his funds, make a blood donation appointment, sign up to the stem cell register, talk about him, give your children a slightly bigger squeeze, breathe in some rural air – whatever Rory means to you.
TO RORY
My child.
My heart.
There we were, expecting unexpectedly.
What can I possibly give you?
I can give you 9 months of warmth and stability.
Your father’s arms - that voice which you had heard so often, yet never met.
I can give you stories, imagination,
A voice,
A cry, a laugh.
I can give you nourishment, unlimited.
I can show you my world, follow you round every corner as you lead the way.
I can give you my heart.
I can give you pure love, unquantifiable.
I can give you life, another 230 days of it.
But I cannot stop that life from being taken away.
And what have you given me?
Gifts immeasurable.
Your wide-eyed wisdom and your fearless charm
The confidence to trust in those who love without condition
The knowledge that if I lift my arms in need, those I love will pick me up
Your smile, even in the face of the utmost adversity.
You have taught me more than I can ever teach
That to piece together a full, broken heart is so much more rewarding an endeavour than to conceal an empty one.
That life is for living and loving,
For laughing whenever you can
And crying whenever you need to.
I could dwell on the unfathomable loss,
The indescribable pain.
The injustice of this world and the fragility of health
On all the things I’ll never show you,
On all the things I could not give you.
Or I could dwell on every tiny gift,
Every time we made you laugh,
Every ounce of strength you showed us,
Every second that your eyes held mine.
Every night in which I lay awake and watched you breathing.
Your hands on my face,
Your dimples.
The immense pride I have felt for no other.
Without you I have nothing.
Without you I have everything.
And even as your dust begins to settle
Dust to dust
I know that with my breath I’ll pick you up, spin you around, make you dance.
You’ll catch in every shaft of light, on leaves of plants,
On my eyelashes, those loose ones that I wished upon in vain to save your life.
On tabletops, on window sills, on everything I touch.
I’ll find you everywhere
I’ll keep you constant
I’ll love you always.
