It’s my brother’s bithday today. He’s 21. Does that make him officially an adult? If it does then the world should probably be a bit scared.
He’s down in Oxford loving life/studying/whatever it is you do down there. It’s his first bithday away from us. I’ve sent many things in the post (a blog for another time).
J’s cake last year (before Mum stole a strawberry lace…). Last year we had a party for J’s bithday. We did it the Friday before Mum died. We made homemade pizzas. I made Mum a tiny one with everything on top of it chopped up into teeny pieces. We made J a cake and Mum stole a strawberry lace off the top. She couldn’t move out of her chair independently, and slept a lot, but she was very much in the room. It’s the most lucid I remember her in those final weeks. It’s the last time I remember her eating solid food. A day or two later, she stopped getting out of bed at all. A week later she died.
Dad asked me what they did for my 21st, when trying to decide what to buy J as a present. I got a Pandora charm from Mum and Dad. I spent the day working on a residential and Mum and Dad came over in the evening. We managed to find a restaurent with good enough disabled access for Mum to manage. A month later we had a cake. It was my last birthday with Mum.
A few weeks before my 21st, Mum went into a coma. I remember Dad saying that maybe it was a good time for her to die. It had been very quick. My birthday could be something positive to look forward to after the funeral. I never have been one for making a big deal of my own birthday (though I love making a big deal of others), but I felt even less like doing anything that year. In the end Mum woke up and lived another 8 months. This year I didn’t do anything at all.
I don’t know what Mum would have done for J’s birthday this year. I don’t know whether ‘well Mum’ would have made a big deal of 21st birthdays. There’s a lot I don’t know.
Hello lovely person who follows my blog or social media (or just happened to stumble upon this post, in which case hello and welcome, here is a little more about me, and here is a bit about Mum).
Mum – continuing to support us with charity events, even when she was wheelchair-bound.
As you may know, I’m currently fundraising for Martin House Children’s Hospice.This post tells you a little bit about all of that, but essentially, I’m attempting to raise £5000 in order to improve the lighting in the corridor of the children’s bedrooms to both improve the general light levels, and highlight the artwork on the walls. I’m doing this in memory of Mum, a year after she died.
It’s an ambitious target, and we have lots of plans for events and other things to help raise the money, but it would be amazing if we could hit £1000 by the anniversary of Mum’s death (Sunday). To help us on our way with this, I’m starting a social media campaign. It’s not particularly original, but hopefully it will be effective.
Our little family of five ❤
The idea is, to post a picture of something which lights up your life (we’re lighting up a corridor, and Mum lit up the lives of many people, so it seems fitting). It could be your child, your cat, a friend, a sunset, a bar of chocolate… anything which lights up your life in some way. As you post the picture, tag 5 of your friends to do the same (there were 5 in our family so it seems like a good number), and text ‘FOYO53’ followed by £1/£2/£3/£4/£5/£10 to 70070 to donate to Mum’s fund, or, if you’d rather donate online, you can do so here.
Thank you to everyone who joins in with this, hopefully we can make a hug difference.
It was Mum’s birthday over the weekend. I asked my flatmate how you celebrate a dead person’s birthday. Perhaps with a caterpillar cake and a solitary candle, alone in a room somewhere. She said she’d join me on the cake.
It’s odd how arbitrary dates become meaningful when somebody dies. So many days have passed by since Mum died, most without a second thought, but the 23rd of each month, the monthly anniversary of her death, always sticks in my mind.
Mum was first diagnosed with breast cancer just before her 50th birthday, and it really wasn’t a ‘thing’. I was talking to someone the other day about how it literally wasn’t a big deal when Mum was first diagnosed. None of us thought it would ever come back. None of us were ever particularly worried about it. Mum had caught it early; she had a lumpectomy, and then chemo and radiotherapy. But we were told the chemo and radio were preventative not cureative. Mum would take a week off work for each round of chemo, and for radio she just nipped down while she was at work. Cancer round one flew past us and we barely blinked. It was nice to have Mum home a bit more, and she taught me how to knit, but beyond that life carried on as normal.
That’s why, when the terminal diagnosis appeared, it was all a bit of a shock (at least to us, I think Mum had known there was something not quite right for a few months).
It was four years ago now that Mum was first diagnosed. It’s both amazing and horrible how much life has changed in that period of time. Four years ago I had never seen Mum with no hair, I’d never seen her in a wheelchair, fed her water through a sponge, or wiped her face for her when she couldn’t reach. I’d never made a tiny pizza cut into tiny pieces, made scrambled eggs, or cried into Mum’s unresponsive body. Dad had never sent Mum flying upon encountering a rabbit hole whilst driving her wheelchair, broken such horrible news to our family and friends, or driven to and from the hospital upwards of five times a day.
Even in the almost-year since Mum died, so much has happened. My brother got into Oxford, my other brother picked up a handful of GCSEs, and I got a new job. My granddad has been reinvigorated upon the installation of a pacemaker, my Dad’s flown his plane to new places, and my aunt and uncle have visited new countries.
24th September, Mum’s 54th birthday (or do you stop counting when someone dies?) passed, just as every other day has. People often say that they hope their loved ones are celebrating wherever they are but I’m not sure I believe in heaven, or an afterlife. I’m not sure I believe that Mum is alive in another world, space or time. I think she’s probably just dead. But her spirit and everything she’s taught us will live on in us.
One thing we have decided to do (which is perhaps a little cliché, but we’re rolling with it) is to raise money for charity. The local children’s hospice needs £5000 to install new lighting along the corridor by the children’s bedrooms, which will not only make it nicer for the children, but will also light up the artwork on the walls. Mum worked there for many years, before later becoming a trustee, and myself and my brothers have fond memories of spending time there while she was working. The hospice holds the values, vision, and beliefs that Mum held. It’s an ambitious target, but we’re hoping to raise this money through donations and fundraising. If anyone would like to make a donation in Mum’s memory, you can do so here, or by texting ‘FOYO53’ followed by £1, £2, £3, £4, £5 or £10 to 70070.
Tomorrow, September 24th 2016 marks what would have been Mum’s 54th birthday. October 23rd 2016 will mark one year since Mum died.
We’ve chosen to spend the next month doing what we can to raise money for Martin House Chlidren’s Hospice. Mum worked there for many years, before later becoming a trustee. They share all of Mum’s values, and do some absolutely brilliant work; providing care and respite for families facing harder times than most of us can ever imagine.
Martin House need around £5000 to install new lighting in the corridor that links the children’s bedrooms which as well improving the general light levels will also enable the superb artwork that decorates the walls and ceilings to be better displayed. We feel that as well as being a very worthy course – it reflects the light that Mum brought to all of our lives.
We’d love it if you could join us on this (ambitious!) mission to raise this money over the next month, and possibly beyond. We don’t mind how people get involved – dontating directly, holding a coffee morning at work, having a swear box in the office… no donation or fundraising effort is too small (and if you need ideas or want to run it by us, feel free to message me!).
Thank you in advance for any help/donations you can give to this cause.
Cycling home today, I saw a lot of Mums pulling various uniform-clad little ones across traffic lights, book bags trailing behind them. I also saw a couple of late-teens-early-twenties-aged-child-looker-after-ers laughing and giggling with their rabble, jumping and skipping along the road.
I love seeing it, it’s so lovely to see people happy and enjoying life.
It does make me miss the various little people (and slightly bigger people) I’ve been lucky enough to take care of, though. Growing up, I babysat for the vast majority of the village from the age of fourteen (being a Beaver Scout leader and having younger brothers helps with that!). I’ve lost count of how many lounges I’ve sat in, stories I’ve read, and games I’ve played.
Through volunteering, there are even more hours spent looking after children to add up. The hordes that have come through Beavers, Cubs and Scouts (at one point I helped out at all three, spanning two different troops), and those I worked with when volunteering with Shout Out Leeds, with Team v, at a school or two, play groups and church.
When working in a toy shop for a few years, I met a lot of kids, some very briefly, but there were other more regular shoppers who I got to know quite well. As a student ambassador for a couple of years, I interacted with children and young people of all ages. With many it would be a ten-minute chat, or occasionally a day doing various activities. But residentials were the best bit of the job: whole weeks getting to know some incredible young people, being privileged enough to share their stories, hear their worries, and listen to their hopes and dreams. There are so many young people who I got to know really well, but who I will never see again.
Out of all of the children I’ve looked after, there are a couple who have, perhaps, made the biggest impact on me.
The twins who showed me that even though the world can be ridiculously rubbish, there are still smiles to be had, and Peppa Pig can fix almost anything. They showed me that what my body looks like doesn’t matter, so long as it’s healthy enough to take them swimming. They reminded me that baking can be fun, giggles are infectious, and that mess can be joyful. Their Mum recognised that things could be rough, cancer was rubbish, and hugs from little people were sometimes all that was needed to calm a storm.
The three children belonging to my friend. The youngest, born just a month after Mum’s terminal diagnosis, reminding me that life is cyclical and though people die, and it’s crap that they die, people also live, people are born, and life is precious. The middle one has enough energy to keep a power station active for a week and an imagination to rival that of acclaimed writers, who continues to show me that dreams are important and life isn’t as serious as you think. The eldest, an incredible footballer with a big heart, always outside playing with his friends – a continuous reminder that life is greater than these four walls.
Finally, the two boys who I spent Summer, Easter and Christmas with for three years. The boys who baked with me, swam with me, built dens and Lego models with me, ran down to the river, came to the library and tackled buses with me. The boys who took me to the Great Yorkshire Show, the Royal Armouries and Leeds museum. The two boys who let me kiss things better, let me hug them, let me care about them through a time when the world felt so uncaring. However rubbish my night had been, whatever crap was going through my head, however downright awful I felt, they never failed to lift my mood, show me how to smile and bring light to the darkest of days.
Kids are incredible (as are many of their parents!). I’m not entirely sure how/why their parents decided I was responsible enough to keep their little people alive, but I’m so glad they did. I don’t know how many of them will remember me when they are my age, but I will remember many of them.
Summer has come to a close, and I haven’t done a single day of childcare. It feels very odd. I’ve finally emailed my student ambassador job to let them know I’m not coming back, and had a lovely email in response. I miss some of these children a huge amount. I hope that I can see some of them soon (though a couple of them moved to Guernsey which is mildly inconvenient). I’m growing up and moving on and it’s impossible to take everything from my past to my future, I guess it’s just about recognising that these experiences will always be a part of me and my life – they have shaped me and helped me grow into the person I am today; they have got me through some really tough times. Moving forwards is hard, leaving things I enjoyed and loved is hard – but ultimately, it’s right.
It feels as though cancer has been part of my life forever. It’s only been 4 years. Two elevenths of my life. Or 18%. So not all that much when you calculate the percentage, but I suppose cancer will always be part of my life, now. Having a Mum die of cancer does that to a person. The word cancer will always hit me in a way it never did before August 2012, and I’m more alert than I ever used to be for signs and symptoms of cancer in both myself and those around me.
So over time that percentage will grow. But however much it does grow, whatever number it hits, it will always be under 100%; I had a life before cancer, and there will be parts of my life to come that won’t be defined by this disease, either.
I’ve just cleared out my childhood bedroom at Dad’s house. It used to be called home, or my parents’ house, but none of those seem to fit any more. So it’s now Dad’s house. It’s been a few weeks since I was last there. It’s all a bit odd… When I first went to uni, I didn’t go home for weeks on end. But as Mum became more ill, I went home more often, so it never really felt like I was moving out… or moved out. I haven’t slept in that room since Mum’s coma in February 2014, I’ve always stayed in the spare room, but that’s another story for another day.
Going through my room was like travelling through time. With every cupboard, every drawer, and every bag, another set of memories was uncovered.
It’s amazing how many details of childhood get lost in the fog of memory and time. I had a house in a village and a small primary school and some friends. I had reading achievements, book cover design achievements, a poem in a published book. I had a church, a Sunday school, the Fairtrade stall, a few Christian camps. I had swimming badges, Brownies badges, Guides badges, Explorer Scout badges, and Duke of Edinburgh awards. I had music certificate after music certificate after music certificate. I had multiple art books, a jar of wool-ends from the granny square blanket Mum helped me put together, another jar of little paper stars I used to fold. I had tennis trophies, a table tennis bat, a few medals from charity runs. I had enough charity and volunteering t-shirts to clothe a small army.
I uncovered the life of a person with hopes, dreams, aspirations and confidence. Someone who looked to the future, knew what she wanted, and had long-term goals. Someone who got involved in anything and everything, and aimed to be the best at everything she tried. I uncovered the life of a person who feels so far removed from myself that I’m not sure I recognise them.
Some of losing these things is just growing up. It’s a natural part of life. But it’s almost as though cancer came into my life and slowly took my interests, and what made me ‘me’, erasing them from my life one by one.
I had a life before cancer, but I don’t want to go back to that life, because it doesn’t feel like ‘my life’ anymore. I don’t want to try and go back to the person I was before because it would be like trying to fit a jigsaw piece into a hole that it doesn’t belong in. I would say I feel broken, and irreversibly changed, but I’m not sure that’s entirely true. I have changed. My perspective has changed, and to some extent my life values have, too. Cancer has ripped a hole in my life, and caused me to forget to live for a couple of years. It makes living hard at times, even now, because it feels like I’ve ‘checked out’ for the last few years, and in that time things have changed and people have moved on – it’s impossible to jump straight back in feet first.
I had a life before cancer, and I’m not going to get that back. I don’t want to get it back. But if I had a life before cancer, I can have a life after cancer, too. I’ve just got to keep taking steps forward, no matter how hard it gets. I’ve just got to keep on keeping on
Losing my anchor is hard to explain. It feels like I’m floating around in life with nothing to tie me down or ground me.
As Hope Edelman writes in Motherless Daughters:
But if you’re twenty-five and you’ve lost your mother, how do you know where you are? It’s really, really difficult to not know where you are at that age. You need to be in relation to something. Dad may be really important and helpful, but he’s not a woman.
I’m a bit younger than 25… but it still resonates with me. My emotions can run wild and there is nobody to keep them in check. Sometimes I get upset (like anyone else), but where there used to be that person to give me a hug or receive a ‘brain dump’ text, there is now a blank space. Other times I’m really happy, good things have happened and I want to share them. But it’s hard sometimes to find that person to share it with. So it peters out.
I don’t really want anyone to fix anything. I’m not really expecting any answers. I just want someone to say ‘actually, yeah, that’s crap’, and then have a chat, give me a hug, and move on with life.
It’s a weird sensation losing your life anchor. Sometimes it’s a very lonely place to be. It can feel like you’re out at sea and you can shout, scream, sing, dance, whatever… but nobody can see or hear you.
When you have an anchor, it can be easier to try new things, meet new people, and go to new places, because you know that there is someone to come back to if it goes wrong (or if it goes right!). You know that after a long day, when you’re tired, there’s someone to welcome you home. You know that if you get ill, there’s someone to look after you (even if it is by text). You know that if you have questions to ask, there is someone to go to.
My Dad is very good for a lot of these things. He’s still there to go to and is pretty much always there when I need him. My two brothers are also lifesavers at times (even if communication is sometimes a struggle for a 16-year-old boy). I have some amazing friends, too, who listen to my brain outpourings and answer my questions. I’m lucky to have some fantastic women in my life who mentor me, listen to me, answer questions and give me hugs. Some I view as almost adopted ‘big sisters’. But nobody will ever replace Mum. Nobody has the seemingly unlimited amounts of time, love, and patience that Mum possessed, and there is nothing on this planet that is as safe, warm, and grounding as a Mum hug.
Missing Mum is to be expected. Nine and a bit months on and I’m almost more frustrated that she’s missing out on stuff, than I am upset that she’s gone. I get angry. Cancer sucks, in a big way. I want to shout and scream at it for destroying her body and taking away her life, but there is no point in that because cancer wouldn’t hear or care. I’m frustrated that she’s not here when I need her. Sometimes I get mad at her for leaving life, even though I know it wasn’t her fault or her choice. I often want to throw a tantrum at the injustice of it all. Or to run and run until my body burns and I can focus on external pain, rather than the internal pain I feel. I want my chest to burn from being alive, not from the pain of someone being dead. I want Mum back.
I’m floating around. Bouncing backwards and forwards like a ball stuck in a pinball machine. I feel like I’m flying away and losing control and there is nobody to catch me and bring me back. I try to communicate things, but my words get stuck and lost and float away, unheard. Mum used to practically be able to read my mind (which I definitely was not a fan of at times!), but that seems to be a power that only Mums possess. It’s nobody’s fault but my own. It’s not that people aren’t listening or don’t care, it’s that I don’t have the words. I just miss her. I want my anchor back.
It’s been 9 months since you left and to be honest, it’s about time you came back. I’ve definitely learned the lesson of how fab you are and how much I need you in my life; I promise to never forget that ever again. I just need you to come back.
Sometimes I think it’s all maybe getting a little easier, but then I’m hit with another huge whallop of grief – determined to knock me down and keep me there. I have to do whatever I can to find some air again and claw my way out of the grief vacuum. It would be far too easy to drown in it.
It’s sunny now. Summer is here (in true British form of ‘is it going to rain today? I better take a coat just in case’). Last summer you hardly left the house – it was too painful and tiring. The summer before I barely remember, I think you must have been working, and I was too. The summer before that we all went away as a family, climbing up mountains in France and mountain biking down them. It was boiling hot but there was snow at the top of the mountains. There are photos of us standing in snow in t-shirts.
You loved summer. You would come home on time to watch Wimbledon (unlike the rest of the year when you would often work late), then would finish your work later that evening, after ‘Today at Wimbledon’ had finished. We’d play table tennis in the garden, or actual tennis down at the local tennis club. We’d go to places on weekends sometimes; Yorkshire Sculpture Park or Harewood House, or even just have a potter around Wetherby. You would normally take a couple of weeks annual leave and we would go somewhere – France for many years, but Spain once or twice, or different places in the UK.
I remember one day last summer really clearly. It must have been summer because I was wearing the dress I’m wearing today (I hadn’t realised that until I thought about it just now!). Dad was at the cottage so I offered to come home and be with you. You woke up mid-morning. I helped you to the bathroom and found your medication that Dad had left out for me. You thanked me for looking after you – you had kept insisting that friends could come over or carers could come round – but that morning you told me you appreciated it being a family member. In that moment I wished more than anything that I had my life more ‘together’. I wished I’d passed my driving test so I could have come over more and done more. I wished I was more sorted, more settled, more able to help. I wished I could have spent more time with you.
I miss you.
My driving test is coming up – I’ve finally almost reached that point (let’s hope I pass…). I’m settling down. I’ve got a better work-life balance. I might have been more able to help this year. But it’s a year too late.
Nine months is no time at all, yet in my head it stretches on forever. It’s not even a year. In the grand scheme of things it’s nothing, but it’s a nine months which have perhaps been harder than any previous nine months that I’ve ever lived through.
So, it’s about time you came back now, you’ve been gone long enough. We’ve learned to do a few things without you – we’ve learned to make a decent Christmas cake, we’ve learned which suncream to buy, we’re learning how to have fun again. E managed to get off on a school trip with all documentation intact, J has finished a year of work without killing or maiming any children, Dad’s kept the house going and the boys alive. We miss you, though.
I miss you, Mum, it’s been nine months too long and the sun is screaming out for you to bustle through the house and throw us all outside.
It’s graduation season. Facebook knows it, Instagram knows it; it feels like everyone in the world is graduating. If you can count yourself among that number, then all I have to say is this: congratulations. I have so much respect and admiration for anyone who completes uni, whatever their degree class. It’s really not an easy thing to do, and it’s so lovely to see people smiling next to their proud family members and friends. I know people that have completed uni despite really difficult life circumstances, and I think that it’s phenomenal to have achieved so much, and they should be incredibly proud.
I also know quite a few people who should have finished university this year, but they’re not, because life didn’t go to plan. Some have horrible illnesses to deal with, some have chronically or terminally ill family members, for others life has just dealt them a rough hand and they’ve been blown off course a bit.
Currently, I’m sat in my jimjams watching Come Dine With Me repeats and hoping that tonight might be the night that I actually get a decent amount of sleep. Looking at all of these celebratory photographs while feeling so far removed from them can be pretty difficult, because there’s a nagging voice in the back of my brain saying “that could’ve been you”. It can be so easy to look at other people’s lives and see all that you’ve lost. Had life gone to plan, I would have been stood there alongside my peers in a cap and gown, smiling next to two proud parents. That’s what I always thought would happen when I signed up to university three years ago.
But for me, and some others I know, even if we’d have stayed at uni and graduated with our class, we wouldn’t have had two parents stood smiling next to us, because we don’t have two parents any more.
The other morning, I was cycling around this beautiful city I now call home, as part of my job. I later went into the office, talked to my lovely colleagues, and spent a couple of hours listening to the radio whilst doing some work. I left the office and went to The Hut where I volunteer, and spent a while sat on a bench, chatting in the sunshine with a friend I met there. I came home and after a driving lesson, I spent some time with my flatmate, doing her hair for a dinner she was going to. I’m so lucky. I’m much more content than I have been in a long, long, time. I feel like I’m finally beginning to get a little ‘me’ back.
I wouldn’t have ever found The Hut, or my job, if I hadn’t left uni when I did. I wouldn’t have made that friend; I probably wouldn’t be living where I am now. I don’t know what I would have done or where I would be, but I wouldn’t be here; and I’m happy here.
I know a few others who have left uni, too, or are simply graduating at a later date. One or two have jobs, some are still living in this city and others have moved elsewhere. All of them are doing something with their life, and that’s amazing to see.
So here’s to those of us whose lives got blown off course. Those who are continuing to get up and face the world every single day, despite seeing how far life will go to try and make sure we can’t. Who are in new jobs, making new friends, creating a different life from the one we had always planned. Who might not have got a cap and gown on today, but who got dressed in something resembling an acceptable outfit, despite the crippling depression/stress/pain that can be in our lives, those of us for whom getting dressed and leaving the house is a real achievement. Here’s to those of us who don’t have that certificate, but who deserve a medal for simply participating in life when sometimes all we want to do is hide.
To everyone who is continuing to live their life, despite horrendous circumstances, I’m proud of you. To my friends who are watching Facebook this week with a pang of disappointment or sense of failure, I’m proud of you. I’m so proud of you for continuing to smile, for continuing to check if others around you are okay, for holding others together when you feel like falling apart, I’m really, really proud of you. I hope that you can look at all you have achieved, and all that you are, even if it’s not something you can get a certificate for, and feel a little proud of yourself, too.
Chilling on Friday morning, reflecting on the lack of graduation, but the amazingness that is my job 🙂
Around the time of Mum’s death, I came across The Dinner Party. It originates in America, and there is currently only one Dinner Party in the UK (based in London). It’s been at the back of my mind for a while, but has come to the forefront of my mind recently, for a couple of reasons.
The idea of the The Dinner Party, is that people who’ve experienced loss come together over some food, and chat openly and honesty about loss, and life after loss.
I’ve been thinking about hosting one in York… I’ve spoken to TDP about how I would go about that and they’ve been super helpful. But before I go any further, I wanted to know if there would be any interest from people in attending a Dinner Party based in York? If you would be interested in joining us, please could you drop a comment below with your email, or email me, and I can put a list together and get back to you all 🙂 Thank you!
I better take a coat just in case’). Last summer you hardly left the house – it was too painful and tiring. The summer before I barely remember, I think you must have been working, and I was too. The summer before that we all went away as a family, climbing up mountains in France and mountain biking down them. It was boiling hot but there was snow at the top of the mountains. There are photos of us standing in snow in t-shirts.
You would normally take a couple of weeks annual leave and we would go somewhere – France for many years, but Spain once or twice, or different places in the UK.
Naomi Jane 