When my 6 month old son died, a huge part of me died with him. Regardless of how much time passes, this existential loss will never be any less.
What continues to shock me is how many people expect a ‘full recovery’. Expect me to have ‘moved on’. To be thinking about and feeling
6 years ago yesterday, we took Thomas on his final journey. There is nothing in the world that can prepare you for putting the lid on your child’s casket, knowing that you’ll never see them again.
Yesterday, I worked a night shift on the paeds intensive care unit. The last
This photo was taken 4 hours before Thomas died. We knew death was imminent. We knew this was our last moment as a family of four. Henry was being collected by his grandparents, who we had to call at 3am.
It would not have occurred to me to take photos at this point. My head was
I never saw Thomas alive without tubes and tapes. This week, a talented stranger amalgamated two of my photos of T, to make this image of him.
I’ve seen every photo that exists of T. There aren’t any more. Having a ‘new’ one is just incredible
#bereavedmother
#childloss
#kindness
Not ‘just a student’. I’m a teacher of 16 years. A leader. A Governor. A trustee. A mum of 4. I have life experience, medical experience, first hand patient experience from the other side. I’ve watched my child die. I advocate. I escalate. I’m not ‘just a student’.
#studentnurse
Thomas Edward Garner
27/10/2017 - 29/04/2018
He may be small, but his impact has been huge. He may look fragile, but his fight was mighty. His death left us shattered, but it gave me determination, tenacity, and courage that I didn’t have before. He is missed immensely.
Today is
#NationalBereavedParentsDay
. Surely that’s worth a stop-scrolling-and-read-this-post moment? Please? 💫
Talking about child loss is a completely normal daily occurrence in our family. Talking to a brother that is not there. Including a son in day to day life that isn’t
The smallest of gestures really can have the biggest impact. On Easter Day, one of Thomas’ nurses bought Easter socks for all the children on the PICU. Arriving on the unit that morning, seeing him in his little themed socks really lifted my spirits at what was a particularly
Thomas would be 6 and a half today.
Imagine celebrating a half birthday because deep down, you know you’ll never get to celebrate their first birthday with them alive. I often wonder how this is actually my life.
#BereavedMother
#BabyLoss
#InfantLoss
#InfantDeath
On International Bereaved Mother’s Day 2024, I’m thinking of and sending love to all who have lost children. From those who faced child loss in pregnancy, to those who’s children sadly died in adulthood, and all in between. Age doesn’t matter. Our children should not die before
Because of a nurse advocating, I got one of the best moments of my life; Thomas’ first cuddle. Because of a nurse challenging, I have life long memories. Because of a nurse’s compassion, my son died with dignity & respect.
EVERY SINGLE MOMENT MATTERS
#BeTheChange
#StudentNurse
The way we talk about dying REALLY matters. Professionally, personally, emotionally. It determines our understanding of mortality and influences how we support people through death, through grief, and through life thereafter. Language matters. Individuals matter. Feelings matter.
Today, some Mum’s woke up knowing that their child wasn’t ever going to. Today, some Mum’s sat with their child’s ashes, or at their graves, knowing that they wouldn’t get a cuddle.
Today, some Mum’s will have struggled with social media, with going out, with shopping or going
My life was irreversibly altered by the death of my son. Everything changed. Things that seemed important prior to his death no longer mattered. My motivation, drive, and passion changed, and over time, took a different direction. Trivial matters at work became intolerable. I
The 6th-12th May is “Dying Matters Week”. So let’s talk about it.
We all hope for a long life, and when the time comes, we all want a good death. This will look different from everyone.
But what about when it’s an untimely death? When you have to plan for your child’s death..?
Today, I was successful in gaining my dream job as a PICU nurse. I still can’t believe they chose me! Today, 6 years ago, I took these two pictures of my beautiful boy. I am a NURSE, because of him. He’s my inspiration, my strength, my motivation. This is for you T 💫
#PICUNurse
Today last year, I’d worked my last day as a teacher. The end of a 16 year career. Now, I’m a year away from qualifying with a Masters in CYP Nursing, & I’ve had an incredible year of learning, working &caring. Nursing isn’t what I expected. It’s SO much more.
#StudentNurse
#UoS
Being a paeds nurse is more than just a job. It’s caring for them like they’re your own. It’s being their voice and standing up for them. It’s listening. Really listening. To their stories and their tales, their likes and dislikes, their hopes and fears, and making them feel
@Im11
Thank you for your lovely message. I am very fortunate to have four beautiful boys, three with me. 1 from before T, and 2 after. They give me reason, love, and keep me run off my feet! X
As
#DyingMatters
awareness week comes to an end, I wanted to thank everyone for their support, shares, and kind words. I share to raise awareness, to break the taboo, and to normalise topics that can be difficult to talk about.
To know that a wider audience has been reached,
What is wrong with using the word ‘died’. While I understand the meaning of expired medically, to no longer breathe, imagine saying this to a family. ‘I’m terribly sorry. Your son has expired’. What is wrong with died or dead?! Is this a term I should be using in my writing?
I wish more people would understand exactly what happens in children’s hospices, and how they become lifelines for families of children with complex & life limiting conditions.
@ClaireHouse
has helped our family in so many ways. Please - watch this short video. It may only
At this week's debate on Hospice Funding, I urged the Government to provide an increased level of funding to all children’s hospices, including
@ClaireHouse
&
@ZoesPlaceLiv
in West Derby, that provide magnificent & crucial support for residents in West Derby & beyond.
@NurseStandard
Students pay upwards of £27,000 to train, work 37.5 hours a week, unpaid, while having to claim an additional student loan of up to around £36,000 over three years, simply to live. The meagre £5000p/y bursary doesn’t even cover fees, let alone childcare costs to put your children
Now for the three week wait! I just hope I did enough…
Six years ago today I was sat planning Thomas’ funeral in
@ClaireHouse
. Never would I have imagined that I’d be months away from qualifying as a nurse with a job in PICU. Always inspired by my boy 💙💫
#StudentNurse
“We are a profession that sometimes [doesn’t look] after its own.And that is ubiquitous across every setting we find. So I think there is a real mirror, actually,to hold up to ourselves as a profession about,what can we get right about retention?”START WITH STUDENTS
#studentnurse
Honouring our tradition since 2016. Welcomed 4 kids in '16, '17, '19 & '21. ‘17 was in
#AlderHey
#PICU
. Thomas died in ‘18, and his memory is carried with 'Tom Tom bear', keeping him with us in our annual family photo. Grateful to
@AlderHey
&
@Matalan
.
#Bereavedmother
#childloss
#DyingMattersAwarenessWeek
For anyone that hasn’t experienced the death of a child, I’d imagine that it’s a near impossible thing to even attempt to imagine. In 2018, I wrote about how our family was looked after and cared for, by
@ClaireHouse
, in the hours, days, and weeks
As an experienced teacher, mentoring a student was a privilege.I’d learn as they did.I’d coach, encourage &inspire.
As a student nurse, I’d envisaged similar.I’ve had excellent exposures & I’ve been disregarded. What experiences have other students had?
#studentnurse
#futurenurse
Imagine a life where your hopes are obliterated, your dreams smashed. Your future empty, nothing to look forward to. Imagine birthdays being taboo and every public holiday causing physical pain. You don’t get to celebrate your life events or milestones, but you must be seen to
Today, when clearing space on my Google drive, I found a photo that I have zero recollection of taking, but that instantly transported me back to one of the most horrific, traumatic, and distressing evenings of my life. This photo is heavily cropped, so you can’t see a lot.
The reason for giving up teaching. The reason for paying £18K in uni fees. The reason for a £38K loan (on top of 4 years of previous loan!). The end goal…
All interview tips will be graciously received… 🤞🏻😅
#studentnurse
#futurenurse
#NHSjobs
#PICUnurse
#TomsJourneyUK
#InternationalNursesDay2024
The incredible PICU team that gave us 6 months and 2 days with our baby boy. Without them, we wouldn’t have got to know Thomas. Without them, we wouldn’t have seen him smile, seen him cry, had good times, had memories with him. Without them, he would
6 years ago on
#newyear
, a nurse put T’s Christmas booties & bow tie on his teddy to keep them safe. They’ve stayed there ever since.
I wonder if she realises the significance of her thoughtful act. I’d love her to know that they’re still exactly as she left them
#bereavedmother
How do you explain the death of a sibling to a young child? We didn’t. We let H guide us from the very beginning. We let him be curious, we let him be involved as and when he wanted, and we allowed him to set the pace. We haven’t held anything back from him, or from his younger
Loving a child that is no longer here has made me see life differently, & made me realise that the most important thing in life is genuine intrinsic human connection, in life, in death, and in-between. Time may pass, but love has no limit. Thomas’ memory is a testament to a love
Taking myself in to hospital for
#ReducedMovements
and having my worries & concerns listened to and acted upon are why I am able to celebrate a 3rd Birthday tomorrow. I’ll be forever grateful to my amazing
#NHSConsultant
, and to the whole of the
#VelocityClinic
for their
I took this photo today. I will see it differently to you all. I see three little boys with the fourth missing. The gap is obvious to me, I see it in every picture I take. But this one is especially poignant, as it’s taken on a memorial bench for a little boy, Jude, who died in
Child loss changes you. The person you were dies with your child, and the person you become looks identical; but is forever and irreversibly altered.
We break. We’re angry. We’re beyond sad. Yet we function. We’re happy. We’re positive. Often at the same time. We have no choice.
Two pictures, seemingly worlds apart. Taken one hour apart. The reality of life with a toddler and a critically ill baby.
This time of year is a living nightmare, literally. This is the 6th time round of re-living every moment of the most traumatic week of my life. Every
My baby died. The baby I grew, protected &loved beyond measure. The baby I fought for, challenged beliefs for, gave every ounce of by being to.He died &I couldn’t protect or save him. That love; it doesn’t die. It grows. It aches. It drives me to do more. To be better. For Thomas
‘To be the person who we long to be, we must again be vulnerable. We must take off the armor, put down the weapons, show up, and let ourselves be seen.’
Reading
#BreneBrown
’s book has been such a motivation for me over the last couple of stressful weeks. I ‘chose courage over
THINK: When making a throwaway comment, is it to offer your support, or is it to make yourself feel better in an uncomfortable situation.
“At least you’ve had another baby now”
“It’s not my fault your baby was so sick”
“It could have been worse, he could have been home first”
@theRCN
Students pay upwards of £27,000 to train, work 37.5 hours a week, unpaid, while having to claim an additional student loan of up to around £36,000 over three years, simply to live. The meagre £5000p/y bursary doesn’t even cover fees, let alone childcare costs to put your children
‘Today, I had my chest closed’. 🌟
A PICU milestone and the beginning of the rest of his life. So we thought…
The reality of Congenital Heart Disease. Not every story has a happy ending.
#BereavedMother
#childloss
#CHD
#TomsJourney
Today, I had a moment where I questioned my integrity, my principles, and my authenticity. I challenged myself with ‘why bother’ and ‘what’s the point’ in a time of frustration & upset.
I had to step back and remind myself of who I am, and the values I own. That the right thing
To all the year 6 pupils sitting their SATs this week: YOU are enough. You are not defined my a test or a score. You are defined by YOU. The person that you are when you’re at home, or with your friends, or playing games/sport. The person that you are when you’re happy. When
Reasons I dislike Xmas:
1. My son is dead
2. We will never have another Xmas with him
3. There isn’t a place for him at the table. If there was, he wouldn’t be at it
4. It’s our 5th time doing this. It hasn’t got easier
5. Carrying on like he isn’t dead
#bereavedmother
#childloss
Thankyou
@ClaireHouse
for a fabulous sibling Easter event today. The boys had a fabulous time and we both loved seeing them having so much fun. Thank you for keeping Thomas in the centre of our family through your family support and events.
#ClaireHouseChildrensHospice
As if
#studentnurses
don’t have enough to worry about financially. Today, I got hit with a £60 parking fine at University.
I pay £30pm for a parking permit (so I do have a permit), but can’t ever get a space, so I parked on the end of a row; no yellows, no markings, not
Today is
#NationalSiblingDay
. These 4 may not physically grow up together, but they will grow up knowing all about their little/big brother, and the profound positive impact that he had on our family. They talk about their brother daily and include him in day to day life of their
When memories are all you’ve got, they’re even more important…Here’s one of my absolute favourites of Thomas. Holding him, feeling the warm weight of his body in my arms. Staring into his deep brown eyes, so calm, so perfect.
#bereavedmother
#childloss
#makingmemories
#CHD
I first met this lovely lady in 2007, on the first day of my first career. She was one of my NQT mentors, an exceptionally experienced and talented teacher. Almost 17 years later, her now 10 years retired, me on my second career and four kids later, we still meet up every few
@CamillaPargett1
@jen_jstephen
Thank you for sharing your story too, and it’s lovely to know that you’ve kept Stephen’s legacy going through knowing all about him x
Let’s do this! Another step closer to the end goal. Having a taste of working on PICU & HDU a couple of weeks back has absolutely reconfirmed that it’s the only place that I want to be. Just need to pass the AIMS exam now 🥴🤞🏻
#futurenurse
#PICUNurse
#studentnurse
#criticalcare
“Connection is why we're here; it is what gives purpose and meaning to our lives”.
It’s the energy created between people when they feel valued. When they feel heard. When they feel seen. It’s giving and receiving without judgement. It’s pure, honest, authentic, vulnerable.
The 22nd June was just a typical day. I remember going out for lunch with friends, and taking my 7 month old swimming. I remember feeling content. On the 23rd June, my world came crashing down. You know the rest.
I often reflect upon the stark difference just 24 hours can make.
6 years ago today, I kissed Thomas as he was taken to theatre, believing I’d never see him alive again. The worst moment of my life at the time.
He aced it. He was amazing. I’d never been more in awe.
Today, I looked after a cardiac child. As a nurse. All inspired by Thomas.
@IanByrneMP
@ClaireHouse
@ZoesPlaceLiv
I wish more people would understand exactly what happens in children’s hospices, and how they become lifelines for families of children with complex & life limiting conditions.
@ClaireHouse
has helped our family in so many ways. Please - watch this short video. It may only
Today, 6 years ago was a VERY bad day for T and for us. It would have been the worst day of my life, if that had not come later on. Visceral memory is very real. The things that happened on 20.3.18, I can feel. Really feel. The feelings are worse than the pictures, forever etched
I wholeheartedly relate to all of this. We spent 3 weeks with Thomas after he died, thanks to
@ClaireHouse
. We bathed him, dressed him, got the sun on his face. We had time, made decisions. It was devastatingly beautiful.
This is what it was like spending time with our son’s dead body. He had cancer so there was nothing we could do to stop it. I think I’m posting this because many making/avoiding decisions right now haven’t held their child’s corpse.
The bullying culture of inspections needs to end. It’s damaging to staff, to pupils, to governors, to trusts. Change needs to happen now before more lives are lost.
#exteacher
#ofsted
#EnoughIsEnough
If ever inspectors act in a manner that is intimidating or inappropriate then pause the inspection, seek assistance from the union and lodge a complaint immediately.
In recent weeks we’ve done just that and addressed the situation.
No ifs or buts.
This quote has sat with me for weeks now, not leaving my head. I hate being called brave. I hate being called strong. Resilient. Stoic. All of it. It makes me feel like a fraud. I’m not any of these things - I’m just a normal person, who had no choice. A normal person, who has
I attended this talk at
@NursingLiveUK
. I’d love to see practice facilitated in a more flexible way, as currently 2300 hrs of unpaid work, with no say of where you’re placed, is relentless.I feel students are seen as extra workers ¬ learners with individual needs
#studentnurse
2024 is another year that Thomas will never live in. My lifelong mission is to keep his memory alive by sharing, learning, teaching others & supporting families like mine. T changed me for the better & gave me direction. 2024 is another year of his legacy blooming
#bereavedmother
#HeartMonth
day 2-Thomas:
My inspiration & strength through the toughest times. He put up more of a fight than most could even imagine. It’s my mission keep his and legacy living, which I will do in all I do, the care I give & the families I support.
#CHD
#FutureNurse
#ChildLoss
@leahvix
@RCNStudents
Thank you :) Too many times I’ve been dismissed, my views minimised, and my experience discarded. Personalised learning in practice does not happen for students in my experience. We’re treated as an extra body to keep up with the ward demand. This isn’t ok. My experience matters.
Do all parents find their children's birthdays tinged with a mix of happiness and sadness, or is this another consequence of childloss; a world that I’m forever navigating?
I wonder if the blend of joy and sorrow is universal or as a result of being a bereaved parent.
I have
This is no longer just a dream, but my reality and future! This is the whole reason for my change of career & I’m so excited to be a PICU nurse. I’ve got so much to give. Now, I just need 1 of my final 2 placements to be in CC for experience! 🤞🏻
#studentnurse
#PICUnurse
#NHSJobs
Do you know what a
#ChildrensHospice
actually does? No?Neither did I.Until my son needed one.Alongside lots of medical expertise&family support,
@ClaireHouse
provided
#Bereavement
support.Gave us a place to stay with Thomas once he’d died.Because of them,we have lifelong memories
23/11/17 He was doing SO well. Weaning, expecting extubation. There was excitement, hope, & a real chance of him coming home. I could see it, it was there, within our reach. I had big plans. I had matching big & little brother Xmas outfits…
#bereavedmother
#CHD
#TomsjourneyUK
@NurseStandard
Help student nurses financially. 2300 hours of unpaid work. Yes, we’re learning. But we’re also working as a HCA at the same time and without students, this work wouldn’t get done due to understaffing.
I work 37.5 hour weeks for free, but pay £280pw in nursery fees to do this.
@RosaleenRose
To lose two…words fail me. Horrendous and not anything any parent should ever have to go through. I’m so sorry that you have to live without Avril and Shaun. I’ll bet that your support is invaluable, both to bereaved parents and to the police force. Well done for having the
On Rare Diseases Day 2024, I’d like to raise awareness of 22q11.2 Deletion Syndrome. If you do nothing else for
#RareDiseaseDay2024
today, please give this a share…let’s
#RaiseAwareness
on todays
#LeapYear
, and get
#DiGeorgeSyndrome
out there in Thomas’ memory.
Otherwise
A heartwarming evening at
@ClaireHouse
for 'Light for Love.' This event, now a cherished tradition, marks the start of the festive season for us, keeping Thomas with us in the present. So grateful for the profound impact these moments have on families like ours
#bereavedmother
I am humbled by the support and empathy offered following this post. I have read every single comment and quote, and wanted to thank every person who has reached out with kindness, shared their own stories, and offered words of solidarity. Sharing things this personal can often
When my 6 month old son died, a huge part of me died with him. Regardless of how much time passes, this existential loss will never be any less.
What continues to shock me is how many people expect a ‘full recovery’. Expect me to have ‘moved on’. To be thinking about and feeling
When you’re a parent to a child with complex medical needs& your child dies, where do you belong? What is your identity?Do you still belong to the medical community you were a big part of? Should you still access the services you did? Will you ever be the old you?
#bereavedparent
February is
#HeartMonth
. Do you know what
#CHD
is & how it affects children & families? Will you keep scrolling as it doesn’t affect you?
Because it didn’t affect me either, until it did. This is the moment that I met my son. Not what you imagine is it. CHD doesn’t discriminate
The kids don’t remember the zoo trips, trampoline parks, beach visits, museum outings et al. of the holidays. No. Instead, they remember when Mummy thought she was still a pro, and ‘broke’ her ankle at play gym and had to go to A&E. Obviously.
#ItsNotBroken
#ED
#Gymnastics
@mrbishi1875
Thank you. I hope to collaborate my experience of teaching biology with my experience of an extended PICU stay and eventual withdrawal of life support for my son, empathise with, and care for others. We can do better when we know more!
Genuine human connection is the very core of empathetic relationships in every part of life. My journey to become a paeds nurse has shown me that true connection builds trust, empowers people, and makes them feel valued and cared for, giving them a positive experience in what can
It's beyond abhorrent that a convicted paedophile rapist is now allowed to compete in the Olympics. This vile decision spits in the face of justice, retraumatising rape survivors worldwide. The Olympics should not be a haven for predators and this certainly does not promote