I’ll put my hand up here, and with absolutely no offence meant to anybody, I’ll admit that I dislike the term ‘new normal’ almost as much as I dislike ‘rainbow baby’. (For reference: ‘new normal’ describes the state you find yourself in after a bereavement, serious illness or other life changing event. A ‘rainbow baby’ is a baby born to parents who have lost other children or babies). Even before I joined the ranks of the bereaved I struggled with the term ‘normal’, especially in relation to parenting or children. What on earth is ‘normal’? Everybody’s normal is different, and the word itself implies that there is some kind of invisible generic manual we ‘should’ all be following.

I dislike this term because I think it also implies that there is some kind of end goal with grief and I know this not to be true. Like those other oft repeated adages, ‘Time heals’, ’It will get better’ and, ‘There’s always someone worse off than you’, when you are lost in the maelstrom of grief so intense it feels as if you’ve been hit by a bus every day, these words can feel empty, confusing and offensive. A ‘new normal’ suggests something that we can settle into, even embrace. Yes, on some of my more positive days I can be thankful for my remaining children, I can give thanks to every deity I can think of for our new son, whose presence in all our lives is so healing. I can imagine that things will move forward; sometimes I sit down and write a blog post in half an hour flat and then get up from my desk feeling empowered, alive, fizzing. I start to plan all the things I can do to keep Romy’s memory alive, to help others in their grief, to feel purposeful outside of my family life. I’ve got this grief thing, I’m dealing with it, I’m moving forward with my life, doing positive things.

And then there are the days when that feeling eludes me. I am by nature an optimistic person; or at least I used to be. On certain days (and I’ll be honest, last week saw a run of them), I struggle with simply existing. Everything loses its meaning. I live for the children and when the older two are at school I oscillate between being out of the house for every minute of the day – filling it with tasks, activities, trips out – and feeling very nervous about the prospect of going out at all. Sometimes I just want to be at home with my baby, shut away, not at risk of bumping into anyone who might say something unwittingly insensitive, or expect me to smile and behave ‘normally’ (there it is again) when I don’t want to, or can’t. The funny thing is that on such days I am extremely adept at behaving as if I don’t have a care in the world. On those days, being out is a distraction, a diversion. I know I have a better chance of not crying uncontrollably or feeling adrift if I am out with things to look at, places to be.

Nothing about grieving for your child is normal and nothing about the aftermath, or even your view of your own future, is normal. I find it shocking beyond words that almost two years after the death of my daughter I can still feel just as bad as I did the day after she died. Then, at other times, I can feel excited about a trip to the beach, lunch out with my family, a visit from my sister. However, always hovering on the outskirts of that feeling is one which is definitely not normal. It’s the little voice that reminds me, day in, day out, that Romy is missing from my life. I ‘see’ her in my mind’s eye; tottering about in the garden picking up handfuls of dirt, by my side during a shopping trip, sitting round the table with her brothers and sister. Then the reality hits and I realise that she isn’t there at all and I miss her desperately.

Before Romy was even born, for over a decade I worked in complementary therapy. I started as a reflexologist, then trained in various other therapies, studied healing and became a doula. In my daily life I never even took so much as an aspirin, every ailment was treated, as far as possible, at its source rather than suppressing its symptoms, which from my study of Ayurvedic medicine I had come to view as the final signifier of imbalance in the body. This was my ‘normal’. I believed wholeheartedly in this approach and embraced it totally.

The day that Romy was suddenly taken ill, what I considered to be a lifetime’s worth of knowledge, learning and faith disappeared from my life. As I watched my tiny little girl going through various stages of treatment: scans, drips, needles, punctures, morphine, I felt it all leech away. All I could think was, ‘I don’t care what they have to do, please just let her live.’ At one point a senior medical professional told me, ‘If your daughter even survives this, she’s going to be severely brain damaged.’ ‘Great!’ I thought, ‘Okay: brain damage. We can deal with that. She’ll need special equipment at home. We’ll have to move…’ I was so relieved at the prospect of having her with us still that brain damage was a welcome prognosis.

After she died, I turned my back completely on all that I had held sacred for the majority of my adult life. My medicine cabinet now has Calpol in it. I pop aspirin, paracetamol and ibuprofen at the slightest whiff of pain and have frequented my GP’s surgery more in the last two years than I think I ever have in the previous forty. Rather than embracing pain and sitting with it, trying to find my way back to its source in order to heal, I’ve found myself terrified of it. I have lived with so much unimaginable mental and emotional anguish that just one iota more pain of any description would tip me over the edge, so I take painkillers and hope that in staving it off I might preserve what little is left of my mental balance.

When I think of all the things I worried – no, obsessed – about when the others were babies it makes me want to laugh out loud. Were they ingesting too much salt or sugar? Was filtered water safe for them to drink? Don’t give them any ‘pharmaceuticals’, heaven forbid we should use anything other than the most natural fabrics made from the freshly spun mane of a unicorn on their delicate skin and never, ever, expose them to more than 45 minutes of TV a day. Now, all these things seem downright ludicrous. All I can think is that Romy will never get to experience any of these things. I want my children to have as many experiences as possible and if these occasionally include less than healthy ones that they might actually enjoy then hell, let them do it. It’s one of the few things that I actually get any pleasure out of; watching my children enjoying themselves and if that happens to be with a packet of chocolate biscuits then so be it. And for all that I insisted on everything being natural and inoffensive, it didn’t help Romy, did it? This attitude has permeated to some very deep seated practices for me too. I imagine that some, on losing a loved one in a sudden or shocking way, might lose their faith. I’ve lost other things. I’ve even found myself contemplating whether my twelve year commitment to vegetarianism is worth it any more.

During the early days I was crying out for help, yet most of the help suggested to me fell on (my) deaf ears. I struggled not to sneer at suggestions of homeopathic remedies, snorted with derision at the thought that a massage might help me, got irritated beyond belief at the idea that a healthier eating plan, such as I had been used to, might help bring me into a better balance. ‘No.’ I thought, ‘If the country’s top neurosurgeon couldn’t save my daughter’s life; if all those beeping and pulsating machines couldn’t do it, all that medical knowhow, medicines and modern technology, what help would a bloody aromatherapy diffuser and a homeopathic tablet have been?’ I was fully immersed in the second of Elizabeth Kubler Ross’s well documented Five Stages of Grief: Anger. Actually, I’m still there some of the time. Apparently, the five stages (denial, anger, bargaining, depression and acceptance) are in no particular order and are handily interchangeable. Hilariously, I thought I’d sidestepped anger completely in the beginning. Turns out I was just in shock: why didn’t Elizabeth document that one?

Somewhere at the beginning of this year I got to my lowest point to date. Despite having a healthy, beautiful new baby and two older children I adore, I was desperately low. It was at this fork in the road that I recognised I had a clear decision to make. I could become a victim; stop searching for a different way and surrender to the agony I found myself in or I could try returning a little of my faith to what had worked for me before. I decided on the latter. I took up a Pilates class, had some massages, got to grips with my diet. I was, and still am, breastfeeding my son but following a consultation with a nutritionist I cut down on the huge amounts of processed sugar I was craving and started taking some supplements. A good friend’s gently persistent nagging paid off and I started seeing a friend of hers who is a homeopath.

All these people offered me some valuable insights into what was going on in my head and with my unwelcome new role as a bereaved parent. Two weeks into taking homeopathic remedies, I realised that my long term memories, previously buried in a year of deep shock, started to return to me. The naturopath explained that my sugar cravings were very likely a trigger response to my grief; I was seeking solace from somewhere and sugar, as we all know, is a great short term comfort. It gives us a high, helps us to believe that everything is fine – then it dumps us unceremoniously into a pit of despair. The lessened sugar intake along with the supplements did seem to balance my mood a little. At no point did I ever entertain the idea that I might be returning to any kind of normal. Just actually recognising who I was would be a good start.

The struggle for those of us who have lost children is that we often feel that there is nothing to go back to. All the history that makes up who I believed myself to be; it’s gone. I don’t know myself any more. Sometimes I feel fatigued by the whole thing; exhausted with the story, fed up with being the woman whose baby died, bored of my own tragedy. At others, I find myself genuinely wondering whether any of it actually happened at all. Am I in a film of someone else’s life? Did I even have another daughter? My ‘new normal’ can never be normal because I no longer know what normal is. And all the while my mind ponders these conundrums I outwardly carry on with a very ‘normal’ life. Except now, every small upset has the potential to become a huge drama of, ‘I can’t cope with anything any more’ proportions.

Somehow, during these times I just keep dragging myself back to what feels like it might work, even if I’m trying to convince myself that it won’t. I keep taking the supplements, I eat as healthily as I can, I run a bath. I plan our new garden with its little corner full of Romy’s roses and cornflowers and space to remember her. I visualise the book I will write to tell our story, I see her on its cover. I keep writing, keep remembering Romy and keep looking at the smiling, happy faces of my other three children, dressed in horrifically synthetic dressing up costumes stuffing their faces with biscuits while enjoying a silly TV programme with me and remind myself that going forwards is what matters the most; even if we don’t know what we are moving towards and even if it is only one small step at a time.