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

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