Thursday, 3 January 2019
Christmas is a really tough time for bereaved parents. It doesn’t matter whether it’s your first Christmas without your child or your tenth, it’s a time for families to be together and there is always somebody missing in ours.
We have an 11-year-old and a seven-year-old, but we always include our late son Charlie in our Christmas traditions. Every year, without fail, we have three stockings hanging up on the fireplace and a decoration with his name on up on our tree. One of our friends very kindly bought this for us and it is just one of the ways you can support bereaved families at Christmas. My Dad always sends a card for Charlie and hangs a ribbon on the Meningitis Now tree in memory of him. It is gestures like this that make us feel he is still recognised as part of our family.
I would strongly suggest including their name when you send Christmas cards or messages. Even if you just write something like “and remembering Charlie” or “Charlie is always in our thoughts” in your card, it will make a huge difference to someone who has lost a child. I know people worry that they will bring up an upsetting memory by mentioning him, but believe me, it’s never something we can forget. Charlie is on my mind daily, so other people acknowledging him doesn’t bring up anything that isn’t already in my thoughts. It actually makes me happy that they’ve remembered him and included him.
Many of our family and friends donate the money they would have spent on a Christmas present for Charlie to his charity. Again, this is a positive move and shows us you are thinking of him, whilst also giving money to a good cause in his name. A lot of people now donate to charity, in lieu of sending Christmas cards. If you don’t have ties to a particular charity, then why not ask a bereaved family if you can donate to one of their choice? It’s another way of recognising their loss and showing your support.
I can’t speak for all bereaved parents, as we all have different views on it, but if in doubt, ask. There’s a big fear about speaking to someone about their child who has passed away, but for me it’s a release and I’m always happy to talk to people about him. I lost many friends after Charlie died because they avoided me, they didn’t know what to say. I don’t care if you say the “wrong” thing, if at least you have made an effort. I do care if you cut me out of your life because you feel awkward, or cross the street so you don’t have to talk to me. That is something I won’t forget.
Even if you don’t have the means to donate to a charity or give a gift, then just be there to listen. I have good days and bad days around Christmas. There are times where I feel lucky to spend time with the children I do have and then occasions when I feel angry that I don’t get to have all my children with me.
Sometimes remembering the child who is not there is the greatest gift you can give to a bereaved parent. If you make an effort to include them at Christmas time, then you might just make a difficult period that bit more bearable.
This was first published on the Huffington Post UK website.
Sunday, 25 November 2018
I started having counselling sessions earlier this year, after suffering a breakdown. I’d tried counselling in the past and gave up after six sessions. I just thought it wasn’t for me. I’m a pretty open book anyway and thought talking to friends and family was enough. It turned out it wasn’t.
It all came to a head when I read a story, similar to to my son’s death. Reading it brought back terrible memories, that I’d buried deep inside my brain. Memories that were too painful to process.
I reached out to a charity who generously funded counselling sessions for me. By that point I would have tried anything. It was one of the lowest points of my life. A friend recommended a local counsellor and as soon as I met her, I felt a deep connection. I can’t stress enough how important it is to find the right counsellor. To pour your heart out to a stranger, you need someone who you can trust, has empathy and you bond with.
It’s taken months of sessions but through talking about Charlie, I’ve also found an acceptance of me and who I am. My counsellor has given me techniques to deal with my grief and led me to the path of mindfulness. I’ve learnt to avoid knee jerk reactions to situations by stopping to think first. It’s been tough to re-learn my natural reactions but it has helped my mental health tremendously.
Now I look at myself and the impact my words have on other people. It’s very easy to get tone wrong on social media. I look at the long term consequences of what I say and how I say it and ask myself, is it worth it making that comment or that status?
We’ve just passed the eighth anniversary of my son’s death and this is the first year I have felt in control of my emotions. Grief doesn’t have an expiry date and I was putting pressure on myself to “get over it” as I felt other people expected me to. Through counselling I have realised I can accept anniversaries are going to be tough but I have the tools to get through them. I can make them into something positive. Time spent with friends or just alone with my family. The choice is ours and I don’t have to justify my grief to anyone.
I have more confidence in myself as a person. I have tightened my circle and kept the people who love me close. Those are the people who matter to me. I can be the real me with them. Silly, daft, show off, attention seeking me! Because that’s who I am and at 39-years-old I have no intention of changing.
I am now embracing who I am. If I want to sing, I will sing! It makes me feel good. My ambition was to write a children’s book and I have just completed my first one. Success isn’t important to me but fulfilling my dreams is. Writing is my outlet and is good for me.
I’ve always felt the need to please other people, to the detriment of my own mental health. Now I concentrate on those closest to me and can be a better support for them.
Letting go of negativity was a big change for me. In the past few years I became very angry with the world. I wanted to change things and my opinions always came first. Now I sit back and read more. I listen more. I can make changes to the world without making someone else feel bad about their choices.
Dealing with my grief has been the main theme throughout my sessions and I’m still a work in progress. I think mental health should be treated like any other illness and be kept in check with regular counselling sessions. Even though I have strategies to help me cope, I still feel the need to have regular sessions, to keep me mentally stable.
We all come across bumps in the road and nobody has an easy life. Just an hour with my counsellor keeps me on track and focuses me. The reassurance that I’m heading in the right direction and how to overcome different challenges I face. I find it incredibly frustrating that so many people don’t have access to this sort of care. I strongly believe it should be available quickly and easily to anyone who needs it. I wouldn’t have got through the past few months without it and full credit goes to my brilliant counsellor and what she has taught me.
This blog post was first published at Huffington Post UK
This blog post was first published at Huffington Post UK
Sunday, 28 October 2018
Today is the eighth anniversary of Charlie's death and the conclusion of my fundraising challenge. Our family, friends, Meningitis Now staff and even my teacher from school, have made videos for our Grand Finale! We are calling this our Song for Charlie. You can read Charlie's story at http://charliecheekychops.blogspot.com/.
Please watch the video to the end as it has important details about our fundraiser in the closing sequence. We wanted to make a video which will make you laugh and perhaps cry but most importantly raise awareness and funds for Meningitis Now.
The symptoms of meningitis in a baby or child under 5 are...
* Fever, cold hands and feet
* Refusing food/milk and vomiting
* Fretful, dislike of being handled
* Drowsy, floppy, unresponsive
* Rapid breathing or grunting
* Unusual cry/moaning
* Tense, bulging fontanelle (soft spot)
* Stiff neck, dislike of bright lights
* Pale blotchy skin
* Spots/rash - NOT EVERYONE GETS A RASH
You can find more details at www.meningitisnow.org.uk and donate to Charlie's fund at https://charlie-benjamin-mann.muchloved.com/. We have raised over £1,200 with this challenge and are now nearly at £39,000 overall. We would love to get closer to our target of £40,000.
Finally, a huge thank you all the people who took the time to take part in this video. There are over 50 people in it and we are grateful to every single one of you.
Sunday, 7 October 2018
Eight years ago this month, I lost my three month old som Charlie to Meningitis. October has always been a tough time for me mentally as I suffer from Seasonal Affective Disorder (SAD) but now I find it even harder to get through the days, as I battle with my grief. For me, Autumn conjures up memoties of depth and despair. No more sitting outside in the sunshine. evenings with the children having water fight are long gone. The cold and grey days accompanied by dark evenings, all add to the depression I already suffer with.
This year I decided to make a change. To take a positive step and take charge of my mental health. I wanted a challenge. Something that was fun and would keep my mind off what was to come in the next month. I also made the decision to combine it with some fundraising in my son’s name for Meningitis Now who gave us great support after his death.
I asked around and got some great ideas. One friend suggested a challenge called “Walk A Day In My Shoes” where I would wear a pair of borrowed shoes and take a picture, which I would then upload to my social media accounts. I’ve had everything from golf shoes to flippers! I'm disabled and in a wheelchair due to severe epilepsy, so the idea being, that as I can’t walk myself, I would be somebody else for the day.
Another friend suggested I sing a song a day. I’m well known by my friends for my lack of singing ability, so of course the requests for raps, rock songs and any tune I could murder came flooding in! I decided to link the shoe to the song, so for example I wore snow boots and rapped Ice Ice Baby! It has been lots of fun but most importantly people are contributing to a cause that is really important to me and my family.
Being disabled means I’m not able to do a big marathon or climb a mountain, like most people would do for a big sponsored challenge. It limits me but I’ve made the best of what I’ve got and it’s been a huge success so far.
Since Charlie died, our family and friends have been busy fundraising over the years and we raised just over £37,500. In the past three weeks we have raised another £1,100 with my challenge. I intend to carry on for 30 days in total and then finish with a group song on the anniversary of his death. We want to involve as many people as possible to bring awareness of meningitis and of course, much needed funds for the charity. More details are on my social media pages if you would like to get involved.
It’s been really important for me mentally, to feel that I’m contributing to his cause and bring myself out of the depression I find myself in this time of year. Several friends have shared a meme which states “the trees are about to show us how lovely it is to let things go” but that couldn’t be further from the truth for me. Autumn is about loss,about death. I needed to make it about something more positive and what better way to do that than by raising money in memory of Charlie. Even if it means making a complete fool out of myself!
To read more about my fundraising efforts follow my Instagram page Yet Another Mum Blog or Facebook page Yet Another Mum Blog You can donate to Charlie's fund here and help us reach our goal of £40,000.
Sunday, 9 September 2018
Firstly you need to know two important things about me. 1) My son Charlie died from meningitis, eight years ago, when he was three months old. 2) I have extremely limited mobility and I am a wheelchair user with severe epilepsy.
Ok, now we have those facts out of the way, lets get on to the good stuff! Eight years ago we set up a fundraising page for Charlie at Meningitis Now. The link to it is here. We have currently raised £37,741.06 and my goal is to reach £40,000 before 28th October 2018 which is the anniversary of his death. At the very least I want to get closer to my target and I'm prepared to make a complete fool of myself to do it!
As I am disabled I can't do a sponsored run or even walk. No skydiving or difficult training courses for me! I put it to my friends for fundraising ideas and they came up with some great ones.
Anyone who follows me on Facebook or Instagram knows I have a particular leg pose during the summer months. The first sight of sun and the legs are out! One of my friends suggested I recreate this leg pose whilst wearing shoes borrowed from friends. The crazier the better and I'm going to try and take pictures in some bizarre places, although this will be health dependent.
Another thing I'm well know for is my love (and lack of ability) of singing. Another friend suggested I sing some songs so I decided I would tie in a song with the choice of footwear. For example yesterday I wore my daughter's rainbow wellies (child size 10) and sang the song If This Isn't Love from Finian's Rainbow. I had never heard of the song or musical before so it was a real challenge for me to learn it. The person who requested the song then made a donation!
Today I borrowed a pair of football boots from my nine year old next door neighbour and sang the John Barnes rap from World in Motion! You see how it works?
My challenge is to do 30 days although they won't be consecutive and I will complete it by 28th October. If you want to see me looking absolutely ridiculous then please follow my Facebook and Instagram pages which I will keep updated with photos and videos.
If you want to read why this cause is so important to me and find out what happened to Charlie then his blog is here.
Any amount, big or small, will be very gratefully received. You can donate by following this link https://charlie-benjamin-mann.muchloved.com/
Thank you so much.
Friday, 24 August 2018
After over two years in a wheelchair I can safely say the world is not a wheelchair friendly place. Yes, there are rules and regulations to follow and there are some measures in place to make places accessible. The Equality Act 2010 states that “public places must take positive steps to remove barriers disabled people face to ensure we receive the same service, as far as this is possible, as someone who is not disabled” (taken from www.citizensadvice.org.uk). That doesn’t mean common sense always comes into play though.
I’ve just spent the past 11 nights in a hotel in Ibiza. A beautiful holiday and quality time with my family in the sun. We researched the hotel before we went. As someone who is disabled, I feel like I’m almost qualified as a detective, trying to find a hotel with suitable access for my wheelchair.
The hotel we picked ticked all the boxes. Three lifts, ramps everywhere, we were on to a winner. On arrival it soon became clear that although these were indeed in place, the actual people in the wheelchairs (there were three of us while I was there) were an afterthought. Tables, sunloungers and trollies were placed at the end of the ramps. Lifts so small I couldn’t push myself into them with my self propelled wheelchair. Thankfully I had family with me to move items and get me into the lifts but there was no way I could have managed alone and a motorised scooter just wouldn’t have been possible. I realise it would have fallen under Spanish regulations and not ours but it highlights the issues disabled people face.
It’s not the first time I’ve had problems in public and i’m sure it won’t be the last. Ramps that have been at the bottom of a cupboard have had to be dug out for me. Special entrances to get into places draw even more attention to my condition. As a person in a wheelchair, I don’t want to stand out any more than I already do.
I also want to be independent. I don’t want to have to ask for help. I’ve had nothing but kind offers from people who have carried me, lifted me and gone off to find the one person in the place with the key for the back door. What I want is to be able to access buildings like anyone else. As mentioned in the Equality Act, I want the same level of service as someone who is not disabled.
We might be a small minority but what about inclusivity? I don’t want to be different. I don’t want everyone staring at me while I’m carried around because my wheelchair won’t go up the stairs. It has reduced me to tears on many occasions and the humiliation is heartbreaking for me. It’s another reminder that the world doesn’t see me as important. That I am an inconvenience, another cost for businesses to pay and the hassle of getting the right equipment.
So what can we do about it? As a community let’s push public places to include disabled people, not just as minimum regulations, but as people with feelings. Put yourselves in our shoes. Would you want to live an independent life? If the answer is yes then please look at your access. Are all your customers treated as equals? That’s what we should be aiming for. I understand we are not their main focus and only represent a small proportion. If they have things in place then that’s great, make sure we can access them easily and make us feel like any other able bodied person. We want to be independent and feel included and there are many changes that need to be made to make that happen.
This blog was first published by The Huffington Post here