Hey Everyone,

I hope you’re all doing well! Welcome to Blogmas Day 6. If you’ve been following me for a while, you’ll know all about my love-hate relationship with December. I’m torn between making new merry memories and reflecting back on those that are rapidly fading. It’s difficult to know what to do, given it’s supposed to be “the most wonderful time of the year” after all. Today marks exactly ten years since my brother died and it just didn’t feel right to talk about something trivial and act like this isn’t happening for me. Given the response I have had to what I have posted in previous years, I thought it would be appropriate to write a bit more about this and share some more of the story with you.

If you want to know more about my brother or what happened, I’ve provided a link to one of my blog posts below that will explain everything:

Read about why December is difficult for me here

I remember after Ben died, I often thought to myself, “How is time going to continue when this has happened to us?“, “How will the world keep on turning and the years keep on passing?“. It felt totally incomprehensible that our lives would have to carry on as normally as possible and that we would have to find a way through this mess. I certainly couldn’t picture myself ten years older, surviving, still going and still coping. It just didn’t seem possible. As a twelve year old girl, about to begin a new chapter in her life, just starting in a big new school with lots of new people and opportunities available, looking into the future was supposed to be exciting. For me, it was incredibly overwhelming and it hurt too much to picture where the hell my life was going to go from there. I wasn’t excited to grow up, I was dreading it. I didn’t want to move on or create new memories when the most important person in my life was no longer going to be there to share it all with. I was so young and I simply couldn’t process or answer all of the questions that were running through my head. Would I be happy? Would it still hurt this much in the future? Would I still remember him? Would people still want to be friends with me? Would we have to get rid of his things? What will Christmases and birthdays be like without him there?

School

It was really tough going through school after Ben died. I felt so lost wandering around the corridors and watching people laughing and linking arms on their way to class. I remember when I finally went back, a few weeks after he had died, I walked into the canteen and nobody knew how to talk to me. Nobody knew what to say. I felt like I had a disease that nobody wanted to catch. At the time, this was heartbreaking for me, to see people avoiding me or whispering when I walked past. Of course now, I understand that they were only children too and they didn’t know or understand how they could make it better. At that age, you’re only really thinking about yourself and how to fit in with everyone else – so I totally get it.

That being said, I had some interesting experiences with the adults there too. I often visited the, rather ironically named, Student Support room, and someone would quickly shuffle me into the sick bay where I could “think” for a while. Oh gee, thanks! I remember one time, I was put in there with a student that had swine flu (delightful company), and above her sobbing I could occasionally hear the staff complaining about their husbands or how they hoped the traffic wouldn’t be bad as they really needed to do the food shop that evening. It felt like my life was suddenly so different to everyone elses. I began to realise that I had crossed a bridge. I was now on the other side of innocence. Small matters were no longer of any consequence to me and so it was difficult to connect with people. This in itself felt like an enormous loss. I was a teenager and I couldn’t fit in and it was terrifying to understand that I couldn’t go back.

Adolescence

I moved to a smaller school and things were a little bit easier. My experience with the staff was much better there. Teachers would notice when I was having a bad day and they would take me to one side and talk to me about how I was feeling. I felt like I mattered and that they really knew me there. Some teachers even shared their own personal stories of loss with me, which I found very comforting. It was nice to be treated normally, without awkward silences whenever I walked into the room. Of course, that didn’t mean everyone around me was supportive. People often judged me for taking time off school on my bad days or when I got emotional during lessons. I went through long periods of depression and anxiety. I often couldn’t get out of bed in the morning, not because I was “lazy” but because I simply didn’t see the point and had given up. I was self-harming, not because I wanted “attention” but because for a split second, it was a relief to have something else that hurt for a while. I was getting poor grades in class, not because I “wasn’t trying”, but because I simply couldn’t concentrate with so much going on in my head.

It was difficult hearing about other people’s families. My friends would often talk about how annoying their siblings were and I would wish I could swap places with them, just to even know what it felt like to experience that. They would talk about their busy birthdays and fun-filled Christmases and my heart would ache. I knew I would never have that and it totally sucked. Most days, I used to come home and go straight up to my room, where I would often sit and cry for hours, overwhelmed by how I felt totally lost in the world. I felt like I didn’t belong anywhere and that I was so different from everyone around me. It was incredibly isolating. I stopped looking forward to things and I never felt truly excited or happy. It was like all of the colour had drained from what was once a very colourful picture.

When I turned 16, I started to notice just how quickly the years were slipping by. I was frightened of becoming a different version of me, one that couldn’t relate to the little girl that Ben knew. I felt like he was slipping away and there was nothing I could do about it. Suddenly I was the same age as he was when he died. It felt so wrong to be overtaking him. I was never supposed to be the older sibling. I started to hate my life and how unfair it all was. I wanted to be a different person, in a different house and in a different family. I was so angry that most of my peer group appeared to be focused on, what seemed to me like, developing a normal teenage identity, whereas I was being forced to completely rebuild from the ground up.

University

I somehow managed to get the grades that I needed in my A-Levels and then it was time to go to university. I was extremely excited to get away and have a completely blank canvas to work with. It was a chance for me to figure out who I was again and how to live with everything that had happened. I struggled occasionally in my first year but university and city life kept me busy and distracted for most of it. Throughout the next year or so I was, for the first time in a long time, much happier. I still struggled with anxiety and occasionally feeling depressed, but it wasn’t as bad as it was when I was a teenager. I had a routine and things to get up for every morning, I had good people around me and I had built my own life. I made new friends and I met my boyfriend and I felt like I was gaining a bit of my identity back.

Graduation

Leaving university and moving back home, is a huge life change for anyone to go through. It’s the end of something big and the start of something even bigger. It wasn’t until I graduated recently that I was hit with grief that I didn’t even know was there. I realised that almost ten years had passed since Ben died and there I was, a completely different person, I was a woman now. An adult.

There was so much that I hadn’t been able to share with him, so many achievements and life changing events. I never got to introduce him to my boyfriend, who is now a huge part of my life. He never knew that I would attend university. He never came to watch my graduation ceremony. He missed my 16th, 18th and 21st birthdays. He never got to read my blog posts. He never got to find out how Harry Potter (our favourite childhood books) ended.

There’s also a lot that he will miss. He won’t be at my wedding. He won’t be an uncle or meet my children. He won’t see my first home. He won’t know what my first job is. The list goes on. He never got to meet me, 22 year old Nina. He probably wouldn’t recognise me now. There’s something very painful about that. It’s almost like I’m losing a part of him that I never knew existed. It’s hard to explain but it’s a new layer to my grief that I’ve never felt before.

Even though I still feel a huge sense of loss, I have actually gained a lot as well. It’s taught me so much about myself and about other people. Although it makes me different, sometimes I’m proud of the way that it defines part of who I am. It has meant that I pay closer attention to those around me. I try to make a memory out every occasion, as I know what it’s like to regret not having done more of that. I’m better equipped to show understanding to other people in emotionally challenging and demanding situations. As a result of having a brother like Ben, whose carers came from all walks of life, I grew up surrounded by nurses, parents, students and grandparents. From the moment I was born, I was exposed to a wide variety of attitudes and values that otherwise I would never have experienced.

Well, here I am ten years later, still surviving, still going and still coping. I can’t say it’s got better, nor can I say it’s any worse – it’s just different. Just the fact that I can write this is different. Grief develops over time. As I have matured over these last ten years, each transition brings up a new layer of processing, with an ever-changing perspective. I guess I wanted to capture the changes that I’ve noticed, mostly for my own sake as I found this quite a therapeutic post to write, but also to be able to share something personal with you. If you want to leave a comment or share your own story or experience of grief, feel free to do so, I’ll be here to listen.

N xxxx

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BLOGMAS DAY 6

Despite the imminence of festivity, December can be the toughest month of the year for some people – it’s not always mince pies and mistletoe. Today, is why I sometimes dread Christmas coming around.

Before I begin, I want to warn you that this is about grief and loss.

My brother Ben was the happiest and most positive person I’ve ever had the pleasure of spending time with. We had lots of happy happy times together, we were inseparable. He was so cheeky and special, life was left pretty boring without him. If you imagine yourself watching the colourful world go by, and all of a sudden a black and white film is cast over everything. That’s the only way I can describe how it felt to lose him. Trying to describe him is too difficult as there aren’t enough words in the world to do it, nor would any be good enough. Unfortunately, Ben died in December which sometimes makes the month quite a difficult time for me. It seemed strange to go through today and post about something trivial when this is such a big part of my life so I hope you don’t mind me telling you about it.

Ben had two disabilities, an unusual combination of Cerebral Palsy and Crohn’s Disease. Two awful disabilities that both had a huge impact on his life. He had good and bad years and during some of the worst, he would be in hospital for long periods of time. 2009 just happened to be one of those bad years. I remember going to bed one night feeling like something wasn’t right and I couldn’t sleep because I was thinking too much. I heard Ben start crying, which was normal to some extent. I went into his room and tried to comfort him and talk to him but he was really poorly. He was vomiting a lot and he kept drifting in and out of consciousness. We all knew something was different this time and I remember my mum was calling people to get advice and explain his symptoms. An ambulance came and paramedics wrote down the details on their gloves. Meanwhile, I packed some things to take with me and I remember stopping to tell my dolls “Ben’s probably not going to come back but I’ll see you soon!”. I guess something had already clicked with me but I was in total denial at the time. My dad and I followed the ambulance to the hospital.

I remember noticing how pale Ben was as they wheeled him into Accident and Emergency. We sat in one of those horribly lit rooms for what felt like hours. I remember being so tired I couldn’t keep my eyes open so Dad found a spare bed for me to sleep in. I can’t remember how I got there, but the next thing I can remember is being sat on a chair by my brother in a children’s ward. He had an oxygen mask on and was surrounded by lots of very concerned looking doctors and nurses. Again, I can’t remember how I got there but I remember next being sat in a family room, playing a video game with another patient there. I remember dad coming to get me and I was then told to go and tell Ben how much I loved him. I talked to him for a while and sung him one of his favourite songs, “Raindrops Keep Falling on My Head”. My nan and grandad came to collect me and I remember they turned up with teddies in the back of the car for me to cuddle on the way home.

When we got there I went round to play at their next-door neighbours as he was a couple of years younger with me and I often went round to see him. I remember passing his mum in the kitchen and casually saying “I don’t think he’s going to make it” and carrying on up the stairs. A little while later, the doorbell rung and my nan had come round to tell me my mum had called and that when I was ready I could go back and call her. I could tell something wasn’t right just from looking at her face. Obviously, at the time, I had no idea that she already knew, so it must have been incredibly hard for her to act oblivious whilst I sat on her living room floor saying how excited I was for him to come home. The phone rang and my nan asked me to pick it up. I’m assuming for my own sake, my brain has stopped me being able to recall this conversation properly. All I can remember is asking mum when Ben was coming home and she had to tell me he had died a few minutes before. I can remember feeling a huge wave of shock and immense sadness. My nan came and sat me on her lap whilst she spoke to mum on the phone. I could hear my grandad burst into tears in the room next door. Ben had died in hospital and I wasn’t there. This is probably the most painful part for me as I am constantly processing the huge level of regret that I feel. I wish I’d never left him there.

Before I carry on, I need to explain a bit about a place that helped us out massively during all of this, so some background is necessary. My family and I had stayed at Helen House with Ben a few times. Helen House is a place where sick and disabled children can stay at, in order to have a break or a bit of a holiday with the facilities of a hospital, which means that you can get the medical care and one to one attention that you need, at all times. If any of you have been to a hospital, you will know that it’s just not a fun place to be, you might have to wait a long time for a doctor to prescribe pain relief, or you might spend hours waiting to get someone who can help you have a bath or get out of bed and go for a walk, but at Helen House, because there is always at least one member of staff dedicated to help each child and also to entertain any siblings, at all times, there is no waiting around and lots more fun for everyone, to help them through really difficult times. We will forever be in their debt, as no amount of money we raise will come anywhere near the real cost of what they have provided for my brother and my family. We didn’t have to pay a penny, but the help was there when we needed it.

For my brother, it was really wonderful, because people really focused on making him comfortable and happy and giving him medication whenever he needed it. I always remember how delighted he was when he went there. He spent quite a lot of time in hospital in the months before he died, but also regularly went to Helen House for special care and he was so much more smiley than in hospital. Being in Helen House made us think far less about the fact that he was dying and far more about the fact that he was really living when he was there, which encouraged us to make the most of the time we had with him. Helen house is a very kind place and the kindness goes on even after a child has died.

A member of staff from Helen House came to the hospital to support my parents and explained that my brother could be taken to Helen House and that a flat would be made available for us all to stay in, while they helped us to make arrangements for his funeral. I was able to use a room in a private part of the house, to sit with Ben and say goodbye in my own time over the next week. This isn’t something that a hospital can offer, as it was comfortable and relaxing without the constant beeping of medical equipment, which as a twelve-year-old kid, was something I really needed to help me come to terms with what had happened, I will always be grateful for this opportunity and for the support that they gave me and my family during that horrible week.

The website for Helen House can be found here.

Incredible work is done by Child Bereavement UK, an organisation, that “supports families and educates professionals when a child of any age dies or is dying, or when a child faces bereavement” and they help thousands of people every year.

I can’t really explain what it means to have lost someone that was such a huge part of my life. I can’t explain what it felt like. Grief is a very individual thing. The part I find the hardest, is telling people how long it’s been. Sometimes people think that the further away the date is, the more likely I am to be “over it” or “okay now” which I can assure you is not the case. That’s probably why I dread each year coming to a close, as it’s a painful reminder that another year has slipped away, pushing us further apart. I worry that people will underestimate how much it hurts, just because it’s been a long time. In my case, it actually hurts more now, I’m just used to living with the pain. It’s become part of who I am. It’s more of a dull ache rather than a sharp pain and it’s not so strange to have hanging over me like it used to be. Sometimes I see it as a scar – it’s always there and I can see where it hurt, I can see the damage that it’s caused but it’s no longer bleeding.

Understandably, on the 6th December, I used to stay at home and not go to school as I had a glimpse of the bigger picture and missing a day of school was just not important to me on a day like this. Someone I used to know once said “one day she needs to get over it” “what’s she going to do when she’s at work? She can’t just have time off all the time”. (sigh) I’m just glad that these types of people haven’t gone through such a horrible thing, to be able to know what it feels like. Over the years I’ve experienced lots of people concerning themselves over whether some of the things I would say were true, I don’t think any of them took the time to consider why I might be lying. In my case, the truth hurt too much to talk about. For years I lied when people asked if I had siblings or not because I was too embarrassed to tell people what the reality was: I was coming home to a very empty house after Ben had died and I didn’t want people to think I was lonely. Thankfully, my brother brought lots of people into our lives that acted as family members throughout my childhood, so if we put it in those terms, I technically have a family with over two hundred loving and kind people in it!

I hope this post shows that it’s okay to be unhappy or upset, whatever day it is, no matter where you’re “supposed” to be, regardless of what other people apparently expect of you or are saying. I hope that with this post, lots of you will be reminded that Christmas can be a really tough time for some people, even if they appear to be perfectly fine on social media. Christmas doesn’t have to be “the most wonderful time of the year” for everyone. Don’t feel that you have to force yourself to smile just because everyone around you might be. It’s okay to tell people and talk about it, no matter what time it is. You can do what you want with your grief and those that aren’t willing to support that, aren’t worth keeping around. Be kind and be nice, as you never know what someone is going through behind closed doors.

Although this is a sad story, I hope some of you have learned a bit more about me, as Ben was and still is a huge part of who I am today.

N xxxx