The Bane of My Life - A Dad's Diary

By Darren Bane

Matthew was born three months early, and spent the first six months of his life at St Michael's Hospital in Bristol, England, which specialises in caring for premature and critically-ill newborns.

This record of the emotional rollercoaster his parents experienced may give other parents of premature babies an idea of what to expect, and inspire them to find the strength to believe that where there's life, there's hope because sometimes, miracles do happen.

• Language: English
• Publisher: Lulu.com
• Release date: Feb 5, 2018
• ISBN: 9780244364960

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The Bane of My Life - A Dad's Diary

The Bane of My Life – A Dad’s Diary

Darren Bane

2018

Darren Bane was born at a very early age and has persistently refused to grow up ever since. He is a multi-award-winning communications professional by day. Away from the day job, he is an amateur author, pretend prestidigitator, jolly hockey player and doting dad. He is married, with one son, and has not yet lived in the south west of England all his life.

Copyright © 2018 Darren Bane.

All rights reserved. You may not copy, store, distribute, transmit, reproduce or otherwise make available this publication (or any part of it) in any form, or by any means (electronic, digital, optical, mechanical, photocopying, recording or otherwise), without the prior written permission of the publisher except for the use of brief quotations in a book review or     scholarly journal.

First Published in 2018 in Great Britain.

ISBN 978-0-244-36496-0

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[e-mail]

www.darrenbane.co.uk

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For Debs, my rock,

for being beside me through all the ups and downs.

For Matthew, the Bane of my life.

For the parents of any premature newborn,

as they embark on their own emotional rollercoaster

and the NICU staff everywhere who are supporting them.

And in memory of Tom

who still shows me how to truly appreciate Matthew.

Acknowledgements

The staff at NICU at St Michael’s Hospital in Bristol hold a particular special place in our hearts. There are far too many to mention them all, but we do especially want to thank Sharon, Chris, Ruth, Iona, Clare, Abbie, Becky, Jenny, Bridget, Catherine, Manobi, Harriet, Fay, Holly, Kathy, Adele, Tori, Bryony, Jade, Jo, Pam, Vron, and Anoo, plus the home team.

The words Thank you will never, ever, be enough.

Particular thanks to Iona, Ruth, Clare and Sharon, who helped me fill in a few blanks in my memory and clarified a few details where my own notes were lacking.

I must also thank my parents, whose love for Matthew is second only to our own, for their unconditional love and support; I hope I can be at least half as good a parent to Matthew as you have been to me.

All profits from the sales of this book (both paperback and digital formats) will be donated to the Cots For Tots Appeal, the special care baby charity which raises funds to support the life-saving services provided at St Michael’s Hospital in Bristol.

Foreword

I was born at a very early age, and have persistently refused to grow up since. That’s just one of many little catchphrases I often use because it amuses me and might make other people smile a little, too.

However, the proverbial last laugh was definitely on me, as my son, Matthew, in a classic case of one-upmanship, was born at an even earlier age - more than three months before he was due.

My wife, Debs, and I had been readying ourselves, as much as any first-time parents can, for the biggest adventure of our lives. But for all the guidebooks, articles and advice available, nothing could prepare us for Matthew’s premature arrival.

We endured an extraordinarily traumatic time, an emotional rollercoaster of ups and downs, highs and lows, and trials and tribulations, during which I greedily consumed whatever scarce crumbs of comfort I could find.

I sought solace by studying the many picture frames lining the walls of the hospital ward that was the centre of our lives for six months. They were filled with ‘then and now’ photographs showing children like Matthew, first as critically-ill, premature newborns, and then as older infants at home, smiling, healthy and happy.

I promised myself that, one day, there would be a frame on that wall with pictures of our son, so that other families might find hope and comfort from our story, just as I had from the pictures I’d looked at.

It was such a tumultuous time that I also decided to start a diary; not because I wanted to re-ride this emotional rollercoaster repeatedly, but because I found it therapeutic. I would get home from hospital, overwhelmed with hopes, fears and emotion. I thought that if I wrote everything down, perhaps it would not prey on my mind in such an all-consuming way, and I might be able to get some much-needed rest in order to help me face whatever might come next.

Ultimately, and thankfully, we got lucky - very lucky - and just over six months after Matthew was born, we brought him home.

There were many more challenges to come – and there still are – but Matthew was out of immediate, life-threatening danger, and we were able to face the future together as a family, because we could now be much more confident, after six months of heartbreaking hardship, that there was a future.

Ultimately, I decided not to produce a picture frame for the hospital, but to do something different. A popular photography shop offered the opportunity to produce photobooks, so I created an ‘autobiography’, letting the pictures tell the story, with captions written as if by Matthew. Inevitably, some of my ‘humour’ (I use the term advisedly) crept in, as this tends to be my coping mechanism; I truly believe that laughter is the best medicine. It might not always be able to remedy a particular problem, but in my experience, it makes coping with it just that little bit easier.

Getting the photobook printed was quite expensive. We made copies for us, my family, and sent some to Canada (my wife is from Montreal). We also presented a copy to the Neonatal Intensive Care Unit (NICU) at St Michael’s Hospital, in Bristol, as an alternative to the many picture frames on its walls.

Two years later, we returned to the hospital for Matthew to be formally discharged. While there, I was told that my book was still in one of the parent waiting rooms and that, only the previous evening, the father of a child undergoing surgery had read it and taken considerable comfort from it while he anxiously waited. Inspired by this, I considered publishing it more widely, but self-publishing was beyond our budget at the time.

A lifelong ambition of mine has been to become a published author. Periodically, I sent manuscripts to publishers and agents, and although I had some encouraging feedback, like many aspiring authors, I soon had a collection of rejection letters and emails.

In time, cheaper ways to self-publish emerged. While I still crave that coveted contract that would enable me to quit the day job and ‘live the dream’ of writing full-time, I did fulfill my ambition of holding in my hand a paperback I had written, without breaking the bank to do it.

I’ve released five books so far (you are holding the sixth!) which, while not selling in the quantities required to trouble the best-seller charts, have sold all over the world. I’ve got ideas for many more, too. But always, at the back of my mind, was Matthew’s photobook.

While I could have recreated it through the publisher I use for my other books, it would cost £30 or more to buy a copy, which I felt was too high, especially as I wanted to be able to price it so that there may be a little profit from each sale, which I could donate to the Cots for Tots charity, which supports NICU at St Michaels Hospital.

So my thoughts turned to publishing my diary instead, which would cost about the same as an average paperback. I did some serious soul-searching; would anybody really want to read it? Was the story simply too personal to be of wider interest? After all, it was a lot darker and lacked the humour and lighter tone that I had tried to inject into Matthew’s ‘autobiographical’ photobook.

In 2017, I turned to social media to canvas opinions. I was surprised by the volume of feedback I received and the fact that it was almost overwhelmingly in favour of publication.

A former work colleague told me that she had given birth to a premature child and that it would have been good to read (a book like this) and ‘normalise’ our experiences with other parents.

But the most inspiring comments came from members of the NICU team who had supported us. One suggested my account of a parent’s experience could be useful for staff training while another, whose advice and support we have valued greatly from the moment Matthew was born, said: It’s nice for parents to know that dark days exist, and that they are not the only ones going through the stress, which seemed to be a common theme.

Yet another friend said: It will offer support and comfort to others going through similar; these sorts of things are so helpful to those who feel they are suffering alone.

Encouraged by the positive feedback, I decided to do it, and this book is the result. I should explain that the passages in italics in this book are verbatim reproductions from my diary. They do not contain my finest prose; there’s some raw emotion, some repetition, and some medical inaccuracies or facts which may be contradicted in a later passage, but it’s what I thought and believed at the time of writing.

I have added some further recollections, written with the benefit of hindsight and a more rational mind (in theory), as well as slipping in some of the lighter comments from the photobook.

It’s also important to note, for context, that while we were living in a surreal bubble for six months, ‘real life’ was continuing outside and, in particular, at work. My two senior managers both moved on, resulting in a departmental restructure which presented the risk of me having to re-apply for my own job, or a revised version of it with a possible pay cut, or even the potential of losing my job altogether. Conversely, there was the potential for a promotion and a pay rise.

The timing was horrendous. It felt as if life was adding insult to injury; as if Matthew wasn’t causing us enough stress, the uncertainty surrounding the job I loved caused me considerable extra turmoil.

Unsurprisingly, this increasingly featured in my diary notes, for the same therapeutic reasons that I was writing about Matthew. However, for the purposes of this book, I have removed the detailed references to the work ‘soap opera’, although it is occasionally referred to because it had a huge impact on my emotional wellbeing.

Of course, our experiences will be different to those of other parents; each journey will be as unique as every individual child. I haven’t published this book to promise any parent that it is a step-by-step guide detailing exactly how your journey is going to go. I can’t promise you that your outcome will be the same as ours; sadly, not every journey has a ‘happy ever after’ ending.

But what I can do, which may help prepare parents, is provide a ‘case study example’ of how you will get highs, which you will celebrate and cling to desperately, and you will get despairing lows, when you will feel as if the rug has been roughly yanked from under your feet, and you will feel in the deepest pit of your stomach.

I hope I can encourage parents to not unrealistically raise their expectations or hope for too much, too soon, when things seem to be going well and, of course, to inspire them to believe that, even in the darkest times, there is reason to not always fear the worst.

Going through my old diary has been quite an emotional pro-cess, but it has also been a reaffirming experience, too.

As I write this, we are thinking about Matthew’s forthcoming tenth birthday, a miraculous milestone in so many ways, even if it’s one that the ‘star of the show’ will undoubtedly be quite oblivious to.

Occasionally, Debs and I have moments of weakness, and feel sorry for ourselves, almost grieving for our dreams of family life that will now never come true. Sometimes, it breaks my heart because I won’t get to experience some of the things I had started looking forward to so much when I knew that I was going to become a father.

Matthew smiles a lot, sings a lot, and has brought us tremendous joy. But he is autistic, he still wears nappies, he can’t read, barely writes, does not communicate in the same way as most children his age, and displays some persistent aggressive behaviour. You can’t talk to him and rationalise with him like you can with most nine-year-olds.

He doesn’t say I love you with any real understanding of the sentiment; we haven’t enjoyed the eager anticipation and excitement ahead of birthdays, holidays and Christmas Days, so yes, sometimes we feel hard done by, cruelly cheated and, occasionally, quite jealous of ‘normal’ families.

But, in reading and reviewing my old diary notes, I have been fully reminded of where we have been, of just how lucky we are to have Matthew in our lives at all, and of just how precious life is.

This, in turn, has reminded me of the single biggest lesson I learned over the past decade, which I wanted to share with others who may be facing an emotional rollercoaster of their own, and which is the main reason for publishing this book.

Please don’t give up, because where there’s life, there’s hope, and often, even in the very darkest and saddest of situations, it is possible to can find a happy thought to hold onto, and to smile about.

Darren Bane, April 2018

Father’s Day, June 2016.

September, 2017.

One

Tuesday, March 25th, 2008.

At around 4pm today, I learned that I am going to have a son, and it’s mind-blowing!

It was the 20-week scan today. After all the difficulties of the miscarriages last year, I wondered if we would ever get to this milestone.

But we did. At last. And it was worth the wait. Almost immediately, they were able to tell us that it looks very much as if it is a boy. They cannot say with 100% certainty, but let’s just say that it appeared as if there were a couple of tell-tale signs!

So, it is no longer an ‘it’ or a pipe dream. It is very real.

Hello Matthew Michael Bane. My son!

All seemed well. All the measurements were as they should be.

Debs has been a little concerned because she thought that maybe she would have felt a bit more movement by now. But all those fears were allayed.

Matthew has grown so much since I first saw him seven weeks ago. His arms and legs, hands and feet were now much more clearly defined. We saw his backbone, his ribs, the four chambers of his heart beating away, and his face.

At one stage there was quite a surreal moment when it looked as if his head lifted up to look straight at us! He looked a little like an alien from one of the Roswell movies, but I can live with that!

Ever since just before Christmas 2007, when we discovered Debs was pregnant again, we have been quietly optimistic. And even though we ordered a pushchair a couple of months ago, and actually bought a cot bed, I have still been a bit cautious, in case something went wrong. But after the scan today, I feel I can relax a little more. Right at the end, Matthew did a big stretch, like a cat. It was almost as if he was saying I’m tired, the show’s over for now, see you soon. We’ve got some scan photos, which we’ll treasure.

I think I can now really start to believe that this is actually going to happen, and that I may soon have a son. Debs and I will finally become parents, and a whole new adventure will begin.

About a month ago, I started putting on weight again. I generally feel pretty fat and unfit these days. It doesn’t help that I get so tired, too. I have so little energy, I generally feel pretty unhealthy.

But this evening, we watched, for the first time, the Simon Pegg comedy film ‘Run, Fatboy, Run’, which made me feel even worse! And then I thought again about Matthew and how, in a couple of years’ time, I want to be able to run around with him, kick a football about, etc. I’ve been making excuses for so long about not exercising and getting fitter. But I feel a renewed determination tonight, and it’s mainly because of my son.

What better inspiration and motivation can there be? I AM going to lose weight and get fitter. I owe it to myself, I owe it to Debs and I owe it to my son.

We are not the wealthiest couple; we are not the youngest. There are many aspects of forthcoming fatherhood which frighten me to death. But then I think of the future; of Matthew watching the clock waiting for me to come home from work to read him a story – we’ve bought loads of Ladybird books recently, and Disney DVDs! I think about taking him to feed some ducks, to Santa’s grot-to, blowing out candles on birthday cakes, taking him to watch a football match, going to the cinema as a family, going to the zoo. So many things.

And I think to myself, yes, it is true; we are not the wealthiest or even healthiest couple! We’re not the youngest. But right now, as I get ready to go to bed, I think that, tonight, we are undoubtedly the happiest couple.

Hello Matthew! Sleep tight, my son. Sweet dreams. See you soon.

That note was written after Debs and I returned to our home in Weston-super-Mare from a clinic in Clifton, Bristol, where the 20-week scan had taken place.

Debs and I got married in 2004, and we both wanted a family. At the beginning of 2008, I was 38-years-old and she had commiserated her 41st birthday just before Christmas. We were no spring chickens, and our biological clocks were ticking.

We had suffered several fairly recent miscarriages, which had been very difficult. When Debs discovered she was pregnant in December 2017, medical staff assured her she would be given very close attention. There had even been talk of considering IVF if we miscarried again.

On Christmas Day, 2007, we told my parents we were expecting, even though it was very early days. We would have preferred not to say anything to anyone quite so soon, given our previous set-backs. But when we arrived at my parents’ house just before lunchtime on Christmas Day, Debs was compelled to politely decline the customary welcome glass of sherry, and any alcoholic alternatives on offer, and felt obliged to explain why.

Some may suggest one drink won’t hurt, especially at Christmas, but after our miscarriages, we did not want to do anything which might jeopardise this pregnancy in any way.

I captured the moment we told my parents on video; they were almost (but not quite) as excited as we were. And so, our festive celebrations got under way with my mum raising a glass of sherry towards my camera, wishing, Merry Christmas to him or her.

Because of our history, we didn’t want to jump the gun or get ahead of ourselves, yet at the same time, we both seemed to instinctively believe somehow that, this time, the pregnancy would progress.

On January 28th, 2008, we had the 13-week scan at Weston-super-Mare’s General Hospital; this was a landmark we had not previously reached, and afforded us our first glimpse of our baby. I had a vague memory of an earlier occasion, probably in relation to one of our previous pregnancies, although I can’t quite remember, in which I saw either a scan or a photo which literally showed a little blob inside Debs.

It was a surreal experience. But, after our previous disappointments, suddenly things felt very real. We had seen our child, and it looked like a ‘proper’ baby. So although, deep down, we knew that we should still err on the side of caution – the next target being to get to the 20-week scan – we did let our excitement and anticipation get ahead of ourselves, and started buying things (or perhaps we were ‘tempting fate’ in a good way, thinking that if we invested time and money in starting to prepare for our child, the pregnancy would have to work this time!).

So, we bought a wooden Winnie-the-Pooh themed cot, which I constructed in what would be our child’s bedroom; we ordered a good-quality pushchair, with built in, but detachable, car seat/baby carrier, and we stocked up on Disney DVDs and Ladybird Books.

We also discussed where Debs would give birth, and had agreed that, taking everything into account such as our ages and history, it would be better for us to go to St Michael’s Hospital in Bristol, as this was more specialised than our local hospital.

I remember leaning on the cot once I had put it together, trying to picture my child lying in it, and what he or she might look like.

At that stage, it still felt like a dream that, one day, a living, breathing, person would be lying here.

In March, we got to the 20-week scan, saw the photo that is on page 8 of this book, and named what we learned would be our son.

Debs and I had agreed that, if we made it to the 20-week scan, then not only would we want to know the sex of the baby, but we would name him or her too. I remember my mum and I having a discussion around the sex of the baby; she said she would not have wanted to know, so that it would be a surprise. We offered not to tell her, so that it still would be a surprise to her, but of course, once we knew, mum insisted we share the news with her, too.

My thinking behind knowing baby Bane’s gender was that we could look at a more definitive theme for his or her room, and by naming the baby, it would enable us to again make the whole situation just that little more personal, and real, and enable us to believe just a little bit more that it was really going to happen this time.

Had we had a girl, she would have been called Kellie Maree. We chose Matthew Michael for a boy – the Michael after my father (as Maree would have been after my mother) – since my parents had always been so supportive to us in so many ways over the years.

We chose ‘Matthew’ for a number of reasons; there was no one else in the family called Matthew, so we could never be accused of showing any favour or causing any offence; I couldn’t think of any silly or offensive nicknames in tandem with our surname; and, ultimately, we both liked it. It was as simple as that.

We left that clinic in Clifton, heaved a huge collective sigh of relief, and smiled, outwardly and inwardly.

We had passed a major milestone; we could now dare to believe that our dream of becoming parents was going to come true.

I had never intended to keep a full diary - I simply didn’t have the time - which is why I did not write anything after that 20-week scan note until after Matthew was born.

That first note was just meant to be a very brief insight into my thoughts and a record, to share with him in the future, of our first acknowledgement of Matthew as our boy rather than a biological blob, a record of us finally accepting that this was real.

We were given a due date of Friday, August 8th, 2008, which gave us four-and-a-half months or so to mentally and emotionally prepare ourselves, make our large basement flat on the seafront in Weston ready, and to make the most of our ‘freedom’ because, undoubtedly, our lives as we knew them were about to change forever. Little did we know just what lay in store!

I had recently received two free tickets to a British theme park, Alton Towers, through an annual token-collect giveaway in a national newspaper, which were valid for Wednesday, May 7th, 2008. I was keen to get my regular rollercoaster fix, as I had no idea of how long it would be before I would be able to go again, although I did like the idea of, one day, sitting alongside my son on some of my favourite rides, and enjoying them together. As it was, for this trip, I would be sitting alongside my youngest brother, Dave.

On Friday, May 9th, Debs and I were due to drive south to Paignton, in Devon, for a long weekend break in a luxury caravan, with my parents, plus Dave and his partner. For several years, we had enjoyed a number of such short breaks and long weekends.

This break would be particularly poignant for Debs and I, as it would be our last as a couple, before we became a family of three.

Our plan was to ask my dad to use his considerable skills be-hind the lens to take some nice portraits of myself, Debs and ‘bump’, which we would be able to share with Matthew in the future.

I was Media Relations Manager for my local police force at the time and, as part of my continual professional development, I had been studying – mostly at home, but also with several classroom sessions – for a public relations diploma, to supplement my existing journalism qualification.

The timing was perfect, because I was due to submit the final piece of work for this qualification, which is Master’s Degree-level, by the first week of August, a few days before Matthew’s due date. So, with a bit of luck, he would be on time, my studies would all be out of the way, and I would be able to fully focus on my family.

Debs had been working at a local nursing home. Her options were limited, because we didn’t feel it made financial sense for us to run two cars, (and, in any event, Debs had not made the necessary enquiries concerning the validity of her Canadian driving licence), and because it had been our intention to have children.

Debs had also said that, at least initially, she would prefer to be a stay-at-home mum, to properly bond with our child, which I had no problem with.

We bought a book, which we would use to document the first few months of Matthew’s life.

There were spaces in it for scan pictures, a photograph of the excited, expectant,