support

Social media…a force for good?

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Social media is an integral part of life for many of us these days and despite recent revelations about how our data may have been used (and the fact it can be incredibly addictive) it can be a really positive thing too. It can bring like-minded people together for a cause, interest or hobby, offer support for people experiencing the same condition or situation as well as enable friends and family separated by distance to keep up with each other’s lives. It can also be a fantastic platform for advertising small businesses, social or fundraising events and it can help people who are isolated to feel like they belong to something, but on the flip side, the temptation to compare our lives to other people’s posts online can leave us feeling decidedly inadequate!

This is because we only generally share the best version of ourselves online. The flattering photo of us looking as close to fabulous as possible or the picture of our child with the award they’ve won, smiling sweetly at the camera. However, we are less quick to share a photo of us looking decidedly rough or of our child slamming doors and throwing a tantrum, because we don’t want people to see that side of our lives. We want the airbrushed version. Filter well and truly in place.

And what about when people we consider friends share pictures of a night out we weren’t invited too!? Or when someone posts photos of their exotic holiday when we are struggling just to pay the bills? Or when it seems everyone is sharing news of their pregnancy and what we want more than anything is to have a child, or people announcing news of their engagement when we long to be married? It’s in your face, it’s in your hand, it’s on your phone and yet it can be strangely compelling to view these selected snapshots of other people’s lives. Constantly!

For the bereaved or the separated it can be particularly painful. On the one hand there is great potential support available online via groups on social media, but to access this you will no doubt have to negotiate the updates from other people’s lives. Other people’s lives that carry on regardless, unaffected by the loss you feel so deeply and that hurts so much. As time passes it may becomes less painful and less all consuming, but sometimes to see a picture of a smiling happy family with a mum, dad and children doing something fun together is too much to bear. It’s not jealousy, it’s just capturing something that you don’t have any more.

So how can we make the social media experience a more positive one? Well, we can change the settings on our phone so it isn’t pinging every time someone shares a tweet, uploads a photo or posts an update. That way you’re not tempted to check what it is (that funny meme or cute cat video can wait to be viewed later!) There is also the ‘unfollow’ option. So if a certain person’s posts upset you or wind you up…stop following them! (The option on Facebook also means you don’t have to ‘unfriend’ them, but it will stop the person whose posts irritate you clogging up your newsfeed!)

Maybe consider finding an online group for an interest you have, or a cause you’re interested in. Use social media to connect with other like minded people in a positive way. Or maybe consider starting something yourself! Is there a need for a support group for something? (Beautiful Stationery Addiction?!) or do you want to find people who share your love of something? (Beautiful Stationery?! Do you see a theme emerging?) Social media can be a fantastic way of reaching a huge number of people who have similar interests or experiences to you.

The charity I started for bereaved children certainly wouldn’t have reached as many people, as quickly as it has, without the use of social media. When I first had the idea I was able to raise the money I needed to get started in just over 24 hours, by sharing a crowdfunding page on Facebook. I also set up a page for the group and could share it, reaching far more people than I would’ve done by putting up posters and sending out letters. It has also been a great way of finding other organisations doing similar things in different parts of the country as well as linking up with other local groups and charities.

So, for all of the bad press and negativity, why not decide to take control of social media and choose to use it for good? You might be surprised what you find.

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#YoureNotAlone

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Today is the beginning of Children’s Grief Awareness Week UK (16th-22nd November 2017) with the focus on acknowledging the painful impact the death of a loved one has on a child and giving an opportunity to make sure the children receive the support they need. #YoureNotAlone.

Bereaved Children Support York was created nearly exactly 18 months ago, for that reason. So that bereaved children could come together and realise they are not alone and that other children have experienced a similar loss. Our aim is to support children and their families living in the York area, so they are better able to cope with the impact of bereavement on their lives. We do this in 3 ways.

1. Monthly Peer support Drop-in sessions

This is how it all started, with toys, crafts and resources and an opportunity for bereaved children and families to come together in a relaxed and friendly environment knowing that everyone there has experienced something similar, because losing a significant person in your life, especially as a child, can be incredibly isolating.

This year we have moved to a bigger venue, with better facilities and more space for the children to play. Oh and it has an Xbox! This has definitely meant that the children are interacting much more and have been able to be more creative in their play.

2. Therapeutic Support

We are delighted that we are now able to offer one to one therapeutic support provided by experienced Bereavement Practitioners for those children who need it. Not every child who has been bereaved needs additional help outside their existing support network, but some do and we want to be able to offer this service. This is running as a pilot project initially to gauge demand, but we anticipate this will be high and the service will expand according. Anyone can refer a child, but we do ask that parental consent be obtained. (Please contact us at info.bcsy@gmail.com for more information).

3. Training

We also wanted to be able to offer training for schools on how to best support the bereaved children in their care. We know from the families we have met that some schools do a fantastic job in supporting their bereaved children, but others not so much. We hosted our first training day in October led by a great facilitator from Child Bereavement UK. The feedback was overwhelmingly positive so we are putting the finishing touches to a second training day to be held early next year. Children spend so much time at school and the normality and routine can really help those who are grieving, especially in the early days, but it is so important that schools realise the impact of grief and that it is an ongoing process. Not time limited. In fact often as a child reaches a new level of maturity they will experience their grief in a new way. It’s not all done and dusted after the funeral or once the first anniversary has passed.

It is all made possible because of some wonderful people and fundraisers

We are now an officially registered charity (no: 1171422) with Lisa and Yvonne joining the team as trustees and we have received some fantastic grants and donations from various organisations and individuals. Our initial grant was from the Ed de Nunzio Trust, which enabled us to establish the Bereavement Practitioner pilot project and host the first training day. Since then we have received generous donations from Ambiente, The Phil Curtis Annual Fun Day, Bel’s 10K, Sally and Wayne’s wedding gift and Kathryn’s dad as well as other individuals and the ’round pound’ collection! We have been overwhelmed by the generosity of people and we are so very grateful. Thank you!

So what’s next?

We are planning to keep doing what we’re doing…but try and reach more bereaved children, young people and their families. We are starting to arrange get togethers for the adults and in the process of writing a new leaflet to distribute to schools, GP surgeries and other organisations outlining the support we offer. We will be running another training day for schools and also looking at ways to develop support more specifically aimed at teenagers and young people. We are also delighted to be the official charity partner for the mini and junior runs at the York 10K in August 2018.

These children and young people have all experienced the most devastating losses in their young lives. We can’t take the pain away, but if we can help them and their families find a way to feel better able to cope with their grief then we will have achieved our goal.

Why I write

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So, you might be wondering why I started writing these blogs that occasionally appear on your Facebook newsfeed or maybe you’ve never given it a second thought, but I’m going to tell you anyway! (So if you don’t want to know the reasons…look away now!)

To help others

The main reason I write my blog is to (hopefully!) help others in similar situations to those I find myself in. It’s certainly not a pity party. I try not to moan and I do aim to inject some humour if I can. Personally I find it reassuring to read about someone who has had a similar experience to me, so I hope others find it helpful too. I have written about the reality of living with MS, bereavement, single parenthood and setting up a charity along with others on anxiety, anger and changes to the benefit system. My hope is that others will find reassurance in reading my experiences, even if it’s to make them feel that they’re making a much better job of it than me!

Raise awareness and challenge preconceptions 

I love to write to raise awareness about different topics that the general public may be unaware of. Fortunately most people don’t know what it’s like to live with a chronic condition, especially when many of the symptoms are invisible. So I try to explain what that’s like so that people have more of an insight, because there are actually many people living with all sorts of ‘hidden’ illnesses and it would be great if there was more of a wider understanding. 

I like to try and challenge preconceptions too. Following my experience of bereavement, both personally and through the charity I run, I realise that the general understanding of grief and more specifically how children grieve is often misunderstood. I hope that some of the blogs raise awareness about the needs of these children and families and how we are seeking ways to meet them. 

It’s also a good way of talking about issues that are often more difficult to discuss face to face, like mental health issues. It’s a whole lot easier to write it down and share than it is to drop it into a conversation, but it means that people who are experiencing similar difficulties know they’re not alone and might even feel able to ask for help or at least talk about how they are feeling with someone else. 

It is also a good platform to raise awareness about political issues like changes to the benefits system, the NHS and education. I get to vent my spleen about injustices! 

It’s therapeutic 

I’ll be honest, I do find writing therapeutic. I have developed a love of writing that I’ve never had before. I write privately for my eyes only too, I don’t share everything publicly, but there are occasions that I think it’s worth sharing a version of my thoughts more widely. 

However, these blogs are not me spilling all of my innermost thoughts onto the screen, they are the edited, relevant highlights. It is therapeutic as in positive and helpful, but not therapy as in treatment. I firmly believe that the internet is not the place the bare your soul, but I think a little self disclosure can be helpful. 

Because I have been encouraged to!

It’s all your fault! I wrote my first blog to mark World MS Day and was overwhelmed by the positive feedback I received from people…not just my friends (who have to be nice…it’s in the job description), but even some people I didn’t know!! So I thought I’d give it another go and that was well received too! So, it grew from there. I don’t publish blogs regularly, but more as topics arise and whilst the feedback remains positive I’ll keep doing it 🙂

Confidence  

I never felt I was very good at writing at school. I got a respectable B in my GCSE (and we won’t mention the A level result) but I was never confident in my ability. I got an ok degree, but again the writing didn’t come easily. It was always a challenge to reach the word count required for essays, but now I often have to cut down what I write because it’s too long! I think I found it difficult because it felt like it was all opinions about stuff that didn’t really matter. Whereas this stuff does matter. It matters that people going through tough times don’t feel alone. It matters that people have a better understanding of disability and grief and lone parenting. And if sharing a little of my experience provides an insight into those areas or helps to reassure someone in a similar situation then I think it’s worth it. 

What’s next?

So what’s next? More of the same I think. I will continue to write about topics, causes and ideas as and when they arise. Regular readers will know I have been asked to write guest blogs for the national charity MS-UK, so that’s an exciting opportunity too. They say everyone has a book in them, I’m not sure about that, but a few hundred words in a blog? That I can do. 


It’s good to talk

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As this quote that circulates on social media suggests, people often don’t know what to say to the bereaved. They don’t want to mention the person who has died in case it causes upset and reminds them that their loved one has gone. Whereas the reality is, of course, that they never forget. They are reminded every day by the empty chair at the table, when they climb into bed alone at the end of the day or when their dad isn’t there to watch the match.
It is one of the last taboos. We don’t like to talk about death or we speak about it in hushed tones. This is particularly the case with children. We don’t like to mention death even though it is the most inevitable part of life. And for the children who are in the devastating situation of having experienced the loss of someone close to them at a young age, we often don’t know what to do for the best. We don’t like to mention it. There is often talk about the resilience of children in the face of tragedy, which implies that they should bounce back and move on. That if we fill their lives with busyness and positivity that they won’t notice that the significant person is missing. That they won’t remember the trauma of watching someone they love fade away or the shock of finding out that someone integral to their life has disappeared forever, with no warning. But this is obviously not the case. You can stuff their days full of dance classes and football matches, play dates and trips to the park, trying to fill every minute with activity, but the loss will still be there to deal with.

There is also the added complication for children because they often experience and revisit their grief when they reach each new level of understanding as they get older. It might be several years since a child lost their special person, but they are going to process it very differently at 13 to how they did when it happened aged 7. 

There is no time limit on grief for adults or children and actually what is the ultimate goal? To deal with it, close that chapter and move on? I would suggest not. The person who has died was an important part of your life when they were alive so cannot and should not be forgotten now that they are not.  Time definitely does help as the feelings and emotions aren’t so raw and the grief is not so all consuming as it is in the beginning. I guess maybe it’s to find a way forward that acknowledges the past and deals with the consequences of what has happened as and when they arise. This is certainly a challenge as an adult, so it must be even harder through they eyes of a child.

That’s partly why I started BCSY and the monthly drop-in sessions for the children. It is not so that they are reminded of their loss once a month on a Saturday afternoon, because as I explained earlier, they haven’t forgotten. It is with them all day, every day. However, it does give them space to actively ‘remember’ their special person by making and creating things in their memory, but equally they might just play and have fun with other children who understand. They don’t have to explain themselves, because for some children they have never met others in a similar situation to them and they can feel very isolated and alone. However, the children often do want to talk about their special person, sometimes about the loss but often about happy things they remember about them. 

As we recently reached and passed the fourth anniversary of losing my husband it was lovely that a couple of people shared their memories of him with me. It was great to be reminded of some things I’d forgotten about. When someone talks about the person who has died and shares a memory or a funny story of something that happened it is not a sad reminder that they have died, but a good reminder of the life they lived. 

Being an ‘only parent’

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The other morning I asked my 10 year old the somewhat risky question of how he would describe me. He said I was kind, helped him with his homework and that I was a good ‘only parent’! At first I thought he said ‘you’re only a parent’ and was ready to give an extensive list of reasons why there was no ‘only’ about it! Then I realised he meant ‘only’ as in ‘single’ and I was rather touched that he thought I was doing ok! 

I have always admired only parents, even before I became one. I marvelled at their strength and ability to manage it all on their own when it was so tough when there was two of us! Parenting is such a challenging job and you receive absolutely no training for it! As all parents know, children don’t come with instruction manuals and even if they did, you soon realise that they quickly become out of date. Just when you think you’ve read theirs and might have them vaguely sussed…everything changes and you realise you actually don’t have a clue! 

So, when only parenthood was thrust upon me 2 years ago, I didn’t really know what to do. As I’ve written about previously, in the early days after my husband died  I found it difficult to make a decision about anything. I couldn’t decide what to wear or what to have for tea, let alone make parenting decisions. All of a sudden, when my son asked if he could go somewhere or do something I had to decide whether he could or not. I had to think…could he? Should he? Was that ok? It took some getting used to and I have certainly made (and continue to make) mistakes along the way. 

But there is another not so negative side to this. There is no conflict between two parents. If I make a decision, that’s it. No negotiating with my other half if we have different views on something. No disagreements and no arguments. So if my son plays with a (soft!) football in the house that’s ok, because I don’t mind, but it was always a bone of contention between me and my husband. 

Discipline is another issue. As someone said to me recently, there’s no ‘good cop, bad cop’…there’s only ‘bad cop’ and you’re always it! All the discipline lies with you and it can feel like you spend all your time nagging and saying no! There’s no one to share the disciplining duties with…you are the sole focus of the ‘Can I? Can I? Can I? Pleeaase can I? Everyone else is going/has one/doesn’t have to/takes it to school’ (delete as applicable) You get the idea.  However, on the positive side there is no playing one parent of against another. No tension caused when one parent says one thing and the child goes to the other parent to see if they can get an answer they like more.

Being a parent is the most amazing, tough, rewarding, emotional, fantastic, frustrating job ever and to be an only parent is a mixed blessing, but a blessing all the same. 

Reflections

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Following on from the amazingly positive feedback I received from my first blog post, I am approaching my second attempt with some trepidation. It’s like that tricky second album after the debut one goes platinum!

So here goes! Please be gentle. 

Just as I hadn’t anticipated retiring from work at 28, neither had I expected to become a widow at 39! My husband sadly died of a heart attack in September 2013 aged 51.

I know it sounds a bit of a morbid topic, but hopefully it will give a bit of an insight into what it’s like when widowhood is thrust upon you, especially at a relatively young (!) age. These are a few of my reflections on those early days. 

I couldn’t make a decision

My husband died suddenly and I was in shock, getting by on not much sleep and quite a lot of adrenaline and caffeine and had the daunting task of organising a funeral for what turned out to be nearly 300 people. You only get one shot at getting it right and I wanted it to be so right, but in the midst of the shock and grief I seemed to lose the ability to make a decision! Which is a bit of a problem when there are so many decisions to be made! My dad suggested I try and make decisions in the mornings when I was less tired. It was good advice, so I tried to make sure I left decisions until the morning where possible.  Wise man, my dad. 

You’re so young

Everyone is always surprised I am a widow, even the funeral service providers. My amazing mum and dad came to stay in the early days after my hubby died and one or both of them would come to appointments with me. Whoever I met with always assumed it was my mum or dad they should be dealing with. The best example was when me and mum were called in for our appointment with the registrar early, while dad parked the car, and mum asked the receptionist if she could tell her husband where we were, when he arrived. There was a brief look of horror on her face as she assumed it was mum’s appointment, not mine! A reoccurring theme that people are always surprised by a young widow! I understand why, but it can lead to some difficult and sometimes upsetting conversations.

Have plenty of tissues 

I ended up with a box of tissues in every room of the house. The tears would come frequently and without warning. My son, who was 8 at the time, would bring me a box of tissues whenever the phone rang! Every time I opened a card with kind words in, read a nice email or a friend called, that would set me off! Or an overwhelming wave of sadness would just hit me. It’s so tiring! The grief. The tears. It was a milestone when I realised I’d got through a whole day without crying! It’s a perfectly ‘normal’ reaction, but exhausting. 

Get a good filing system

It’s boring and practical but the amount of paperwork that you have to deal with is immense! It is the strangest thing. You experience this hugely traumatic life event…the death if your husband, and then you are plunged into this world of registrars, funeral directors, cemeteries , death certificates and paperwork that you are completely unprepared for. Yet you’re kind of expected to know what to do. There are the endless phone calls to companies, financial institutions and government departments explaining over and over again what’s happened. It makes it much easier to deal with if you can keep it all in order. 

Beware the postie

In those very early days, the post would often bring beautiful cards, bouquets of flowers…and brown envelopes with windows! I dreaded those ones! One day a letter would say how much I would be getting and next day there would be another saying how much I owed them! The tax credit system is no more gentle to widows than anyone else! My particular favourite phone call to the tax office was when I rang to repay an overpayment (a joint claim cannot convert to a single claim apparently and they were quick to ask for their money back!) and the chap said, did I just want to pay half and they would get the rest from my ex husband. I explained they’d have trouble as he was my late husband not my ex! A minor detail for them, but a huge detail for me. 

Choose the music wisely 

My husband had always referred to ‘Sweet Home Alabama’ by Lynyrd Skynyrd as his funeral song. Every time we heard it he would say ‘This is my funeral song. I want this played at my funeral’. I have no idea why! Anyway, the only thing I knew for sure when arranging his funeral was that this song had to feature. So it was played at the end if the service. I’m sure many of the congregation probably don’t remember, but I do. And as an avid listener of Radio 2 most days, that blooming song gets played loads! I must hear it at least once a week! (You can guarentee at least every couple of weeks someone requests it on Simon Mayo’s show on a Friday!) Music can be so evocative and I only have to hear the opening bars and I automatically think of him. In the early days, weeks and months it would make me cry and I would have to turn it off, but I’m getting braver these days…most of the time!

What now?

So, what now? The funeral was over, but my whole world had changed forever. I was now a widow and a single mum. This wasn’t the plan! My son and I had to begin to try and find our ‘new normal’…