Posted on December 4, 2013
There can be no ifs, buts or maybes after the death of a child. Acceptance is the only way forward.
I have been blown away by the number of people reading these posts. It is now well over the 100,000 mark and it makes me so proud of Edward to think of how many people have been touched by his story. Today’s post is a general update and I hope that it might also provide support for anybody else trying to come to terms with a similar bereavement. I know how much it can help to read the thoughts of other bereaved parents and have found plenty of comfort myself in their words. It is quite a long update and parts of it are emotionally raw but the underlying message is one of hope and love.
I might as well start with the obvious. It’s December and Christmas is creeping up on us. Edward’s birthday and the anniversary of his death will probably be more intense, but there is nothing quite like the sustained 30 day assault of Christmas and New Year. Some families have the double whammy of the anniversary of their loss and Christmas within a few weeks or days of each other and they are in my thoughts at this very difficult time.
I already have a fully deserved reputation for being a humbug, but my beef is with the commercialisation and increasing length of the Christmas period, not the occasion itself. You couldn’t create a more hazardous concept for a bereaved parent if you tried – a month of festive marketing messages everywhere reminding me you of what you’ve lost. I could, quite frankly, ram that damn Christmas ad right up John Lewis’ backside.
The entire period is like a mass conspiracy by happy people to make you feel miserable. Yet, like so many of the challenges of child loss, it’s us, the bereaved, who must adapt because we’re the exception. We can’t expect the rest of humankind to stop for us and it’s not right to bring others down. We need to rebuild Christmas around a new set of family traditions with Edward present in spirit, but we also need the space and time to do this. This year is going to be especially hard and I am already dreading the school carol service and nativity that Edward and Arthur took part in with Alice for the first time last year. It will bring back painful memories of a happy, lost world but we will also be creating new ones too.
Adapting to a new way of life
When a child dies it is the end of a way of life. In many ways it is simpler. For example, I don’t have any superstitions anymore. None. In fact, I look for ladders to walk under, I put shoes on tables and open umbrellas inside whenever I can. I dare the world to throw whatever it can at me. I am up for the fight. I will have no hesitation in smashing the next mirror that looks at me the wrong way because it’s all bullshit. Life is random, nothing is pre-destined and Edward was not taken for a reason or as part of a grand plan.
It’s how you react to adversity that defines you. Tomorrow will come whether you like it or not, and many of the things that happen will be out of your control. They may be good, indifferent or appalling. If you can accept this you will be able to live in the moment, unconstrained by a future that may or may not happen. I used to worry about the future, I used to plan ahead. I also used to have three children. Not any more.
Old rituals play on my mind. Edward and I used to cook the rice together for family dinners. He loved measuring it out, helping to wash it and then turn the rice cooker on, all the while standing next to me on a kitchen chair so that he could reach the work top. He would shriek in delight when the light went on and then, when it was ready to eat, proudly tell us how he had made it. Now it’s made in silence.
Packing the car to go anywhere is now quicker, but there is a gap in the back seat where he used to sit. I would look in the rearview mirror and make faces at him, Alice and Arthur as they happily played or sang songs together. Life used to revolve around his medication, which could be stressful, but I loved doing it because it was for him. I would give anything to return to those more complicated days but I can’t, so my challenge is to turn these memories into happy ones and, instead of crying that it is all over, I must learn to smile that it ever happened at all. He was a breath of fresh air and a bundle of love, and we were lucky to have him in our lives.
Our children have been exposed to the brutality of life very early, but there are lessons here too. Alice has seen her father cry more than any eight year old child should have to, but she is a trooper. She seems able to sense it coming and will stop whatever she’s doing to come over and hug me or just put a comforting hand on my shoulder. She’s just 8 years old but possesses a level of emotional intelligence that I am very proud of. She cries too, usually at bedtime when she looks at Edward’s funeral service leaflet that she keeps next to her bed, along with a few other mementos of her brother that stay permanently under her pillow. Her old bedroom is empty now and she sleeps next to Arthur in Edward’s bed because they want to be together.
And what of Arthur, a lone twin, separated from his best friend without ever being able to say goodbye? He has astounded us with his resilience and happy go lucky approach to life and has developed his own little ways of coping. He draws pictures of Edward on his hands and arms, refreshing them whenever they fade. A few weeks ago he told us “I can feel Edward in my fingers and toes, but I can’t see him.” It was more a statement than a lament and, although emotional, it was comforting to know that he still feels his presence. He also told us that a young friend at school, clearly meaning no harm and just stating the obvious, had said that he was no longer a twin. It is physically true, but we tell him that he will always be a twin, no matter what. Clare and I are open and honest with them both, and we share the grief amongst us. They are very close to each other now, almost inseparable, which is lovely to see and I am so proud of how positive they have been. I feel that we, and they, are coping well in the circumstances and learning more every day about the important things in life.
I still find it hard to believe just how profound grief is. I knew it would be difficult but nothing can prepare you for the actuality. It is everywhere and effects everything. Even if I’m laughing or genuinely enjoying a moment, scratch under the surface and it’s there. It hasn’t diminished at all but I am learning how to handle it. The crying is ok because it’s natural and cathartic but the volume of tears is a genuine problem and sometimes even comical. I have had to stop working because I can’t read for the tears in my eyes. I have had to pull over and stop driving because I can’t see the road anymore. Driving is particularly hazardous because there’s always the danger of a sad song on the radio. Firework by Katy Perry is a killer – Edward loved it – but it makes me smile as well as cry, because I can see him dancing and laughing with Alice and Arthur.
Lyrics that I would never normally even listen to or acknowledge suddenly have resonance. Just the other day, the old Carly Simon song, Coming Around Again came on. I don’t have a clue what it’s about, but I noticed a line – “So don’t mind if I fall apart, there’s more room in a broken heart.” It just got to me, out of nowhere. I had to stop the car and pull over on the hard shoulder. It’s not a big issue, but can you imagine the embarrassment if some meaningless soppy lyric from an inane teen pop star comes on and I write the car off?
“Sorry officer, I was listening to Miley Cyrus and she just gets my pain.”
Dealing with the Demons
This is the difficult bit that I mentioned earlier and you may want to scroll down to the next section if you’ve already had enough. Writing it is a cathartic exercise for me, and something that I need to get out of my system, but that doesn’t mean you have to read it.
Grief is full of paradoxes. One of the hardest is reconciling the passage of time with the corresponding pain of moving away from the last moment you were with your child. Edward was 4 years old. He will always be 4 years old and it feels like he’s being left behind. On bad days I can see him standing on his own in a field, wearing his favourite red fleece and looking intently at me with his big brown eyes. The grass is green, the sun is out and the sky is blue, but the only sound is the wind. Suddenly I begin to move away, not because I want to, but because the earth is expanding between us, drawing us apart. I want to run towards him but I can’t. My legs won’t move. I want to grab hold of him and bring him with me but I can’t. He gets smaller and smaller as the distance increases. It’s hopeless. We never take our eyes off each other and I call his name but he just looks at me, never saying a word. I feel like I have abandoned him, a little child, my son. He disappears and everything fades to black. I know it is not real but it hurts.
I still get flashbacks to the defining moments in hospital. Each one stops me in my tracks, whatever I am doing. The agony on his face and his cries when we used to make him walk after the operation. We were told that it was for his own good and we kept making him do it, despite hating every second of it. I took photos to show him in the years to come of how he had beaten the odds and now these will haunt me forever. The chilling of the blood when we first realised that something was seriously wrong. The last time he looked at us, scared and in pain, as he was wheeled into theatre. The moment we were told he was going to die. The surreal and rational conversations with the doctor about the best way to let him go. What kind of conversation is that for fuck’s sake? Turning off his life support. Holding him as he slipped away. So many awful moments burned into our memories forever.
For me the hardest demons are the pain Edward was so clearly in before he was readmitted to PICU, and the 3 day delay in putting in a central line, a procedure that could have saved his life. We were never given a full explanation for these delays, other than that the first was caused by the only doctor capable of doing it stopping work at 4pm, and the two successive delays by further ‘resource’ problems. By the time they finally got round to it, a precautionary procedure had become a life saving one that ended in failure. Of course they didn’t realise he had sepsis, which I have since discovered is very hard to diagnose, but that doesn’t make it any easier for me to accept. Yes, almost anybody could be saved in hindsight and it was in all probability a human error of judgement but, had they acted when they said they would, Edward might still be alive. Ifs, buts and maybes.
I have searched my soul to find the strength to come to terms with this. It is the only reason why I have not yet accepted The Evelina’s invitation to go back and discuss with them what happened. This is standard procedure when a child dies and is a positive thing to do. Clare is ready but I am not. I owe it to Edward to be dignified and respectful and not let my emotions get the better of me. I hold the medical team in enormously high regard. They saved his life twice before as a baby and without them we would never have had 4 more precious years. I know that they did everything they possibly could to save him but that delay haunts me. If any of them are reading this, I want them to know how thankful we are for everything they did, but to also understand how utterly devastated we are, and that, for me, this sometimes comes with an overwhelming and intense anger that is looking for a target. I simply cannot risk talking to Edward’s doctors until I am more at peace with this. They, and Edward’s memory, deserve dignity and respect from me. They are a group of amazingly talented and dedicated people without whom he would have died at birth and they will go on to save many more lives and prevent others from suffering our pain. Indeed, other children and families will benefit from the lessons learnt from our loss.
I have written a very long post about this in much more detail but I cannot publish it. I wrote it in the middle of the night, just after Edward died and it is a spiteful piece of writing expressing my distress and utter despair at the role the delayed central line may have played in his death. It is full of accusation and bitterness but it serves no purpose to publish it. However, just writing it allowed me to release unsustainable levels of stress that could have had disastrous consequences if left untapped. I hope that this post will also provide another step towards acceptance.
I am also aware of and in touch with other families going through the agony of legal process (at another hospital, not The Evelina) and seen how, even in the face of overwhelming evidence, the NHS and the bureaucrats that run it will do everything to avoid admitting guilt. Morality and the law are frequently incompatible and never more so than in instances like this. My heart goes out to them. They deserve greater transparency and accountability for obvious failings that clearly contributed to the loss of their children. Nobody should have to go through the agony of a child’s death and then relive it in court because a hospital refuses to acknowledge significant and avoidable failings. In comparison to what these families have endured and the evidence against the hospital involved, I may have to learn to accept that, in comparison, Edward was just very unlucky and paid the ultimate price. It is agonising and probably, by some distance, the hardest issue I will ever have to confront in my life.
Nothing I say or do for the rest of my life will change what has happened. Acceptance is my only salvation. I am not there yet but inspiration for it can come from the strangest source. I came across a Sunday Times interview with Mary Berry, the cook, a few days ago, having been drawn to it by the knowledge that she lost her 19 year old son in a car crash in 1989. Her words are harsh, but perhaps present the only path I can take: “In life, you simply have to accept that things are the way they are. There is tragedy and sadness in many families.” I look at what she has achieved since, the family that she still has around her, and it tells me that I can do it too.
I have also found solace in the writing of others, and not just bereaved parents. Just after Edward died, a blogger I have never met he sent me a short email about the intransient nature of pain. He told me that Edward’s suffering was over and existed only in my memory, and suggested I read a post he had written and talked a little about his own grief for his mother who had recently passed away. I read it and you know what? He was right. The memory of Edward’s pain still haunts me but I know that he is no longer suffering. His pain is in my mind and it is only the memory of it that keeps bringing it back. It is not real anymore. I am, slowly, beginning to accept this.
My sense of humour continues to protect and teach me. For example, I had unwisely got into the trap of regarding the 28th of each month as a repeat of July 28th, the day Edward passed away. It’s silly I know, as I might as well apply the same logic to 5.28am of every morning as well and live in permanent grief. For some reason, as we approached November 28th, I lost track of time and posted my usual little tribute to Edward on various social media and retreated into a bout of deep melancholy. Friends kindly sent me lovely messages of support, including my bemused sister who didn’t want to risk upsetting me by pointing out an obvious mistake. I then realised to my horror that I was two days early and felt like a right chump but it taught me a valuable lesson. Time is just a marker, a human concept that gives us structure but it does not really exist. I recoiled in embarrassment and then laughed more than I have for months, knowing that Edward would have found my buffoonery hilarious. When the day finally did arrive 48 hours later, I was able to remain more composed than in previous months and genuinely believe that I have crossed some sort of bridge and taken another step towards acceptance.
I have been asked several times if I feel that I have lost my privacy with this blog. It’s a good question, but the answer is no. My closest friends will tell you that I can be notoriously unsociable, and they are right. My unfriendliness in person and activity on social media are part of a benevolent but deliberately constructed barrier between me and the outside world that has existed since I was a child. There’s nothing malicious about it at all and is just the way I am.
In fact, the opposite is true. These posts and the blog I wrote in hospital have protected my privacy by allowing me to express my grief without having to do it in front of anyone. I am happy to bear my soul like this, but not to have someone looking at the wounds at the same time. That is reserved for my family. Likewise, during Edward’s stay in hospital, the blog meant that nobody had to call us or stop members of the family in the street to ask what was going on. They already knew. It protected my family from the pain of having to tell people again and again that Edward was very sick. I hope that this does not seem rude or appear ungrateful – anyone who has read my previous posts will know how much we have appreciated the incredible love and support we have been shown.
At the moment, I am avoiding socialising unless I am with my wife. Her presence calms me and reminds me how important dignity and respect are. She possesses levels of kindness and grace that I simply do not have and provides a rock whether at home or when we are out with friends. I do my best to avoid being away from home overnight and even then I make sure that I am staying with either very close friends or family. I also avoid situations in which alcohol is flowing freely – beer, hangovers and grief are very nasty bedfellows.
My wife’s privacy is a completely different issue. I will not divulge what is said between us, nor will I ever expose her emotions and thoughts to the outside world. These posts are mine and mine alone. She understands my need to express myself and exorcise my demons but has never read a single word. She doesn’t need to. She has experienced every second of this journey and dealt with more than most mothers will ever have to. She is here now, the rock of our family, providing me with the courage and strength to keep going. To our friends, please remember that these are my thoughts and not hers, and that she does not deserve to be put on the spot because of anything I say. Please, feel free to talk to me about anything I write because I have made the choice to mourn this way but give my wife the space that she needs.
Phew. A longer update than usual but I hope that some of you have made it this far. I know that parts of it are sad but I want to give an honest account of what grief is like. All things considered, we are ok and we are lucky to have what we have. We are making progress and in so doing I hope that we are helping others who might be on the same journey. I am unlikely to post any updates before the end of the year as there’s only so much I can say without appearing full of self-pity but I do so appreciate the support you have all shown us since Edward died. We have a long way to go but there is light and love in Edward’s legacy and I wish you all the very happiest Christmas and a new year full of hope and happiness.