Without Faith

I am not a religious person.I never have been, apart from a brief zealous period in the Brownies when I wanted to carry the flag in the Sunday School parade. I completed my A Levels at an Irish Catholic school which strongly resembled a spin off of Father Ted crossed with St Trinians; lessons were cancelled if a crucifix fell off the wall ("a sign"), classes were taught via the medium of various versions of Jesus Christ Superstar (I wish I was joking) and everyone generally ran riot. I was indifferent to the religious attitudes surrounding me day in day out, but really very fond of the community I was in. I became decidedly more atheist after going to university and encountering some for more militant religious types who thought that bullying others because they disagreed was acceptable. I know these were mainly in the minority compared to hundreds of gentle, caring soul but it was an unpleasant eye-opener. My family are not religious but my parents and sister quietly have their own beliefs which they follow in ways they feel comfortable with. My father had a slightly more traditionally Christian upbringing from what he says, but his own way of doing things is more insular and private. Many of my friends have faith, from the agnostic maybes to the very committed. I like the idea, but I just cannot believe. This is not just about religion though.

I often wondered that if faced with a dreadful situation, would I instinctively call on God, a God, any God, multiple Gods, to give me strength? Did I feel atheist because I had never been challenged enough in my comfortable life?

Sadly in January 2009 this was put to the test, when my father having contracted an aggressive infected that was shutting down his body and ulcerating his heart was rushed for emergency and life-saving surgery at a major London hospital. We were were a 33% chance of survival. As we sat in the waiting room all night for 6 hours waiting, watching as dawn broke and the smoke from the incinerator several floors belows curled up into the crisp new sky, I thought many things. I wished many things and hoped many more and worried about stupid stupid things. I wanted to find an inner strength, a inner connection, an inner belief. An all-knowing kind benevolence that could be a guarantee on saving the life of this intelligent and kind man who's life hung in the balance on an operating table, at mercy of the experience and capabilities of a team of surgeons we never met before, and at the mercy of even worse: chance. Chance has no compassion. Chance doesn't care about statistics or history. Chance strikes opportunistically.

But I found nothing. Nothing but blindless hope that I hadn't hours earlier spoke my last words to the man who gave me life and brought me up. I wished and I wished; to no one but the silence that cloaked us. When finally, we were told the operation had ceased and we must now watch and wait to monitor the success of that and the antibiotics, the wishing carried on. Wishing is probably the wrong word; it was to no one but for everything. It was a mundane disbelief that this could not be happening to the strong man I knew. Almost a deliberate lack of acceptance and a need to keep going, for if we did as a family, then he would too. And in April that year, he came home.

Many times afterwards, the odd religious friend who knew about the experience would say, "so surely now you believe, now you have been spared."

I'll admit, that made me angry. Being without the foundations and faith of religion, I did not see how I 'should' be a convert. Yes, my father had been saved. By the quickness of the NHS, by renowned doctors and clever nurses. By luck, maybe, but my precision and skill also. By the brilliance of modern care and the civilised world. If I was to believe, even if I wanted to, and goodness did I some bleak days, where was this omnipotent God when my father got that ill? Who, who saves, would let someone get in that situation in the first place? My atheism was more concrete than ever, although with a much softer edge and more understanding of those who did believe. The attitudes mentioned above did make me cross, but I understood how some people needed and felt healed by religion and their faith. Me, I found the things that got me through was not belief but monotony and memories. Memories of happier times and monotony must pay bills, must eat, must update relatives, must wash, must dress.

And then Wriggles came into the world, 12 weeks early on my bathroom floor.

And again, no God even so much as poked His nose around the door of NICU. If I had had a glimmer of believing, I might have done the religious equivalent of leaving him a sherry and mince pie to entice him into my life to give me some cheer and the best present ever, that was currently fighting in an incubator. But I didn't. I couldn't. Where I imagine some keep faith, was an empty box. A hole that was filled certainly with cautious hope as days ticked by, but not directed anywhere. Again monotony gave me strength. That and an-increasingly dog eared photograph of a little scrap that was called my daughter. In order not to be allowed thinking time, I tried to do everything under the sun. Including a spate at work in the middle of the NICU stay. Partly I was run ragged about finances and a very grey-area-ed work contract, but it also offered some salvation of not having to hope or wish or think or be guilty. Hello you're through to .... can I help you? I could just burble under the surface and then run, often literally, as fast as my legs would carry me through the city centre, up past St James football ground, through the park, past a&e and up, up the stairs into NICU where the world stopped turning again until I left.

She started to look like a shrunken baby, and then came home with me. Life started up again. Things fell into place, ironed out, I tried to forget, but even if I didn't, I had a very real reminder of the happy outcome. I could pick her up and carry her around and kiss her until she got fed up with it. And then suddenly I was in my third Intensive Care unit in two years. 

I didn't find anyone there. I didn't expect too. A little of my heart was feeling hardened to the testing and mostly, I knew that the one thing I had faith in didn't have magical properties or an all-seeing benevolence, reason and complex plan. She did have ten fingers and ten toes though. Having had a taste of "normality" was what drove every day into the next day. I could barely leave her side without feeling that the distance might bring us further apart not closer, so my set up vigil provided my hope. I was touched though by a little community drawn up for me by others.In absence of local family, my circle of friends outstripped any expectation and went beyond the call of duty to bring me food parcels, sit with me silently, bring me clean socks, provide a shoulder to cry on (not that I did. That would mean admitting how bloody terrified I was) and some times not leave until 3am in the morning because I refused to leave Wriggles' side. Until the point my mother arrived, and beyond that, all I had to do was mention something and it was done. If I ever needed belief in humanity and kindness restoring, it was now. They didn't do it because they had to or had been told to or believed it would get them to a better end, but because they cared. On my first mother's day there on PICU I received three cards all "by Wriggles" because no one wanted me to feel alone.

Now that is what I believe in. Love of the here and now.

Choosing to See

One dilemma for parents of ill children, particularly very young ones, is choosing how much to watch with the consent of the medical team; how long to stay and when to leave. As well as being there for your children, you have to protect yourself as you are the adult living with the knowledge, the memories and the decisions.

I was watching the fabulous yet emotionally wrenching Great Ormond Street on BBC 2 this week about pioneering and experimental surgery. One brave set of parents were asked an incredibly difficult question: if an operation was going wrong, would you want to be brought into the theatre to be with your child? I have never been in this exact position, but I have been asked a similar question. When Wriggles was in Intensive Care and had her cardiac arrest, one of the doctors who wasn't doing life saving procedures gently suggested I might want to leave.

I didn't.

"Are you sure?" a nurse gently asked. "It can be very distressing."

I stayed. To her immense credit, my best friend who had happened to be sitting with me at the time, stayed with me. I'm not sure I could watch someone else's child go through that.

Although since I have been haunted by the memories that have been fiercely burnt into my mind, I don't regret it. Some people might see it as rubbing salt into a wound, of doing further harm to yourself, of not looking after yourself. It is a very personal thing and one that I think can only be truly decided by the exact circumstances in that exact minute, and the severity and gravity of the situation. Obviously your own beliefs also play a part and your knowledge of your capabilities. 

When Wriggles was is NICU, I preferred to stay with as many procedures as they would let me. I stayed for the head scans, the retinopathy exam, the blood tests. I stayed when they had to stimulate her at times if she lost colour and had apnoeas and bradycardias. I don't think that this makes me a better person than someone who couldn't stay at all. Everyone knows what is best. In NICU, a large part of staying for procedures stemmed from a sense of guilt and a very precarious mental state that I was in. Yes, of course I wanted to stay for Wriggles' sake but also I felt I had to. As I have written about before, the very early days were a minefield that were dictated by pure shock and with no roots in emotion or rationality. The guilt from this once it passed was horrendous and taunted me that however much I loved her, I could never make it up from the ambivalence of the first days. Of course this isn't the case. I know now that shock and trauma breeds automatic responses that don't reflect love, passion, family, memory or truth. I became a little obsessed with the idea of staying by her as a mark of my devotion. Luckily, I didn't see anything too horrible and was rewarded by being able to sneak extra cuddles as compensation. Had our journey been far more rocky, it could have been a different kettle of fish so close to that time.

Intensive care at 6 months old was a different situation. I was mentally a lot more "with it" and had allowed myself to fall hopelessly in love with my daughter whom I had cared for, for four months since discharge. I didn't have the same conviction that leaving the room was the equivalent of deserting her for good. However, I still stayed throughout the ups and downs. This was very different though: in NICU, she was very sick and very fragile from prematurity. But, aside from the first week of her life, there wasn't a point that either the medical staff or I believed her life was endangered. Vulnerable, yes. Developmentally uncertain, definitely. But on the absolute brink? If anyone thought so, they never said. In intensive care though, she was in a very critical position. At the beginning of the stay, although I wanted to be with her, with persuasion I could walk away and sit next door when they intubated, x-rayed or took bloods from her. At this point she wasn't yet critical so I was confident that I could come back and she would still be there; be mine. The ties became much stronger over the coming days as she became sicker. By day 4 of PICU when she arrested, I was thrown into the dilemma: do you want to watch? 


There was no way I was leaving then. If, in that split second as I had to acknowledge, I might loose her then I wanted to be with her. I wanted the person that loved her most to be within touching distance if the unthinkable happened. It's a funny parallel: you simultaneously never give up hope and believe stronger than you have ever believed in anything in that moment, but at that same time, you have in your face the very real fact that life is hanging in the balance. It is like being on a tightrope, but hugging it tight, so tight as if you will never let go and that is what will save you. I felt the same when my dad was critically ill a few years prior-you don't allow yourself to project that life will cease but yet you know it may and the fact nips on your heels as you run on, believing in love and life. And this is the point where only you can choose what to see. Some people will need to stay; some will equally need to go. There is no wrong and no right. One parent may need one thing, and one another. Each may have regret afterwards, but that will vary massively on the outcome.


We were the lucky ones.


One minute thirty seconds.


It could have been so much longer.


It could have been so much quicker.


It could have been a different story altogether.

Could I do it again? I hope against hope I will never ever have to. It is not something I could ever forward-plan. Ours was a one-off episode and thankfully Wriggles has never been that severely ill again. Yes, poorly, yes needing support, but never like that. Watching and listening to stories of families that live that state for infinitely longer was utterly humbling. Both the children and their parents have strength beyond anything you imagine when your child is first placed in your arms, or through an incubator porthole. Love is a force that truly is incredible.

Cuckoo?

Although it is more of an "acceptable" subject these days, mental health still holds something of a taboo. It is not one to be discussed lightly and can be a minefield of political correctness, ignorance and compassion. We're all guilty of claiming to be "depressed" when the washing basket is too full, "going mad" when it's been a bad week or five or "traumatised" over losing something but none of these really go anywhere near acknowledging how it really feels if you are genuinely battling with a mental illness. Mental illness sounds terrifyingly serious. It describes a huge umbrella of things in varying severity, many of which can be recovered from and escaped. I don't think anyone ever expects to become a sufferer or a loved one to succumb. Until you are gripped by one, it is very hard to fully understand being controlled by thoughts and emotions, many devoid of reason or rationality.

There can also be such a fine line.

When do the baby blues turn into postnatal depression? When does grief turn into depression? When does shock turn into post-traumatic stress? When does worry turn into full-blown anxiety?

I cannot speak for everyone, only from my personal experience. At present, I am currently signed off work for a small period following over a year of dealing with post traumatic stress, depression and anxiety. In the main, I have largely been able to control these with help from sertaline (a selected serotonin uptake inhibitor, or SSRI drug) and a course of counselling. There have been low points certainly but so far I have been able to juggle things even if that means really struggling. Lately though, the struggle has been getting harder. Motivation and concentration have gone out the window, and I have been exhausted. My mind has spiralled into a whirlwind of pure emotion, little based on fact. It's not something visible or that people can necessarily understand, which I have found the hardest part. It's easier to joke about loosing your marbles than it is so say "I really, really need some help."

I don't know whether the feelings started from a difficult birth and extended stay in Neonatal, but they certainly grew at an astounding rate shortly after discharge from Paediatric Intensive Care when Wriggles had pneumonia at 6 months old. Then I became quickly swamped, and whilst I could muddle through in the day, when Wriggles was in bed and separated from me, I became a mess. I couldn't eat, drink or sleep, let alone do the washing up. I would sit, glued to the sofa because I felt too leaden to move. I was in a perpetual state of hyper vigilance, waiting ears pricked for disaster to loom again, and would cry silent tears and become surrounded by flashbacks and nightmares of my daughter in distress. The relief after admitting how far things had come was huge. I was told it was a form of post-traumatic stress. Granted, it wasn't going to be the severity of soldiers from combat or people who have suffered horrific abuse or ordeals but in my little world, my family had been rocked as I had stared bleakly at the prospect of losing my child. I was started on sertaline and began counselling in earnest with a wonderful psychologist who had had a premature baby herself previously, which acted as an excellent bond and feeling of trust that she knew what I was going through. With support, the acuteness and rawness began to fade and I began to gain confidence and relax. Daytimes became better, where I could revel and immerse myself in Wriggles without inhibition and slowly I re-learnt to be "normal" at the end of the day and enjoy working. Unfortunately Wriggles had other ideas and an admission lasting nearly a month and enduring a mis-diagnosis of queried brain damage with an unsafe swallow triggered everything off again. I regularly would "hear" the noises of the ventilator and alarms going off and would burst into tears at anything. Thankfully, I was in good hands and able to get back on track with the healing process and shaking things off before a welcome break in the hub of my family over Christmas.

So what now, five months on? Where did I slip again when it was all going so swimmingly? Wriggles is 19 months today, it is just a year yesterday since leaving the hospital after our PICU scare and she is blossoming all the time. It isn't as simple as accepting things are better and consequently getting on with things. It isn't as simple as processing memories. I suspect that like everything, it needs time and these are relatively early days. I imagine also the sense of responsibility and physical demands of being the sole carer as a single parent have not helped, draining me of some energy and quickening the need for maturity and stability. Of course I wouldn't have it any other way, and I would do it all again to have my little girl with me. But once you have been gripped by the fear, it is all too easy for your brain to muddle up facts with emotions and responses with feelings and turn a vulnerable mind into a seemingly random generator of reactions. Depression and anxiety can be bred from post-traumatic stress, they can be there independently. It is beside the point how they got here for me, only that they are there and it is the physical symptoms of them which made me go to GP this week and resulted in some weeks off. It isn't as easy as pointing at a specific memory and saying, "yup, that one there. Zap it" as it is far more complex, especially as some upheaval and work-based anxiety is very much playing into this at present. It wasn't easy admitting it this time and agreeing to take time off. I have been encouraged to in the past but always declined partly for feeling it would be selfish. Yes, it is my responsibility to keep our heads above water financially. But it is also my responsibility to make sure I can care for Wriggles to the best of my ability to ensure that she remains the happy and healthy toddler she is. 

I am confident I can return to being myself, i just need to harness this blasted anxiety and stem the flow of overpowering emotions that come from memory which will enable to me to clearly deal with everyday worries rather than letting them get out of control and taking on exaggerated and fictitious fears. Much of the feeling is a peculiar form of grief and guilt. One blog I enjoy has put this into words better than I can here. It feels wrong to use the word 'grief' without reference to a bereavement, as I am acutely aware how lucky I am not to have had to deal with such and my heart goes out to all that sadly have. The feelings are similar though, and in my experience can stun you into a sense of separating from the rest of the world. Asking for help and admitting that I can't just lock a box of the past away has been one of the hardest things I have done, and I am not naive enough to think it will all just magic away and that there may be repercussions in how people tread in the future. But that is another day. For now, I am looking after Wriggles, and looking after myself *puts kettle on".

"Normal"

Yesterday morning I was idly listening to the...gulp...Archers omnibus, whilst chasing a newly crawling Wriggles around when I heard the storyline about a heart attack. Bloody Archers, first they have the premature baby storyline (reduced me to hysterical tears over the dinner table at Christmas just weeks after Wriggles reached 'term') and now one about hearts! A lump rose to my throat and I was transported back to the Intensive Care waiting rooms of my father and beautiful daughter within seconds, scared and tired in an empty clinical world.

I also fittingly read a discussion on "normality" after trauma and if you ever return to your former state or feel like you fit back in with the world. Can you, and are you, 'normal' again?

Survival

My family, I reckon, are born fighters. 


Between my immediate family between us we have survived pneumonia (repeatedly and in varying severity), multiple organ failure, sepsis, cardiac arrest and a stroke. The worst culprits are my father and my daughter. 


Three years ago my father wound up in Intensive Care after taking a turn for the worst with what his GP thought was gastric flu. After progressively deteriorating, he was taken to our local hospital where they grew increasingly concerned. Gastric flu or not, they were concerned about his heart and decided to transfer him to a larger hospital with an outstanding surgical team. It happened very quickly; I was travelling down from university as fast as I could and throughout the few hours of my trip he was sedated to preserve his energy and I arrived just before the ambulance did, to transfer him to London up the motorway. We were prepped as to his immediate emergency surgery to repair his heart, which had been damaged by staphylococcus and not gastric flu at all, that was ulcerating and eating away at the muscle. There was a 33% chance of success, but without it, the doctor gave him 24-48 hours. That train journey my mum, sister and myself took was fraught. We were on a knife edge and raced to get to St Thomas' hospital. Once there, we discovered my father was not. We were distraught and immediately thought the worst. A phone call revealed a delay; the local hospital wanted to stabilise him before starting out to give him the best chance.