Monday, 8 November 2010

Happy Birthday Emma

It's been six months since I've updated this blog. There are reasons for that. I can absolutely assure you though that the reason is not because I'm fine now. I think I've explored in great detail in pretty much all of my previous posts that "fine" is not necessarily something I'll be getting back to at any point in the near future so I won't go into that now. The reason for this post is that tomorrow would have been Emma's first birthday.

Emma is still missing from our lives. We've even got that inscribed on her headstone, but life, for the rest of us has gone on despite an overwhelming desire for the planet to just stop turning. Most parents only come to the point where they've finished their parental duties when their child moves out, gets a job, gets married, you know, grows up. Emma doesn't get to grow up and we did everything practical that we can do for her before the date of her first birthday. All we get to do now is remember. Rach often tells me that as she looked at Emma in the hospital she thought "I'm never going to get to see you get married". We never will. I always said that I didn't see the point of a birthday party for a 1 year old. "What's the point in a party for them, they don't know what day it is." No they don't. I know now that the party is not for them, it's for the parents, for them to be able to mark a genuinely special occasion. I just hope that parents genuinely understand how precious that occasion is.

The fact that I haven't written in a while does not mean that I have run out of things to say. I still have plenty to write about because we still think of Emma every single day. I haven't written because Rach is now pregnant. Up until now we haven't really wanted to talk about that publicly and since many of my thoughts about Emma now are closely linked to how I feel about becoming a father again, it wasn't right to update the blog. It's also not right to do that now, because this is all about Emma's special day.

Happy Birthday, Beautiful

Love from Daddy

Saturday, 8 May 2010

6 Months On...

For probably the first three years of a child's life, their age is marked in months rather than years. Each month is clocked up by proud parents and some are seen as real milestones. Emma was born six months ago today and it kills me that she isn't here for us to mark it with us. But I am going to mark it. I'm going to mark it by doing something that I've been putting off since I started to write this blog. I'm going to tell the story of the two days between when she was born and and when she was taken away from us.

She was born by caesarian, in the evening at twenty three minutes past nine. She was a good size 6lb 5oz considering it was three weeks early, and seemed fine. There had been worries about her kidneys throughout the pregnancy and we knew she was going to need some scans to determine how healthy they were, but we knew that we had a day or two so we were just enjoying the moment. We didn't even take any photos at that stage, as far as we were concerned we had all the time in the world. She didn't feed though. To be honest we weren't that concerned about it, "she'll feed when she's ready" we thought. Rach was taken to the ward and the midwives took Emma to be fed, I stayed with Emma. She still wasn't feeding. She was also, what the midwives called, "moaning". Easiest way I can describe what moaning is like is a soft whimper, that breaks your fucking heart.

A paediatrician was called. He listened to her chest. He wasn't happy so Emma was moved to the special care baby unit in Wrexham Maelor hospital. This is probably when alarm bells should have been going off in my head, but they weren't. I was totally convinced that everything would be fine. Seeing her in SCBU though was an eye-opener. The consultant was called ard her initial diagnosis was heart lesions. Two hours earlier I was a father looking forward to watching my little girl grow up, now I was looking forward to her having open heart surgery. I was devastated then, but looking back now the possibility of surgery would have been a godsend. They called Alder Hey to see if a bed was available and arranged for her to be transferred early in the morning. Rach, after her surgery was bed ridden so they wheeled her in to SCBU to see Emma before she was transferred. Prepping her to be moved took what seemed like an age. They intubated her hooked her up monitors and wires and drips. They sealed her in a capsule with her little Miffy soft toy and they took my little girl away in the ambulance.

So as the sun was coming up on the morning of the 10th of Novemeber, I kissed Rach goodbye and left her with her mum to drive to Alder Hey alone. I have never in my life felt as lonely as I did on that drive. I called my mum, asked to come over from Ireland. She realised that the situation was serious and started to make arrangements. I think I arrived in Alder Hey about 8 in the morning, I'm not sure about any times. I went straight to the Paediatric Intensive Care Unit and was asked to wait in the relatives room. I met a man there who told me about his little girl, born 16 weeks premature. He'd been there for a month. He showed me a picture of his little girl. His "little Thumbelina" he called her. Her outlook was serious and he'd been told on three occasions that she wasn't going to survive. "Look out for them taking you into a side room" he told me, "that never means good news".

I'd waited in the relatives room for almost an hour when Julia, the nurse who looked after Emma in the day came to get me. She brought me through to see her. She was intubated and sedated and so, so ill, but still gorgeous. I sat and held her hand and talked to her. Julia explained what all the monitors for. I couldn't for the life of me tell you what the are now. The doctors came round and gave their diagnosis. They told me that no lesions were detected in Emma's scans, that the struggle to breath and eat was likely caused by mucus in her lungs, that they would monitor her for a day or so, but the mucus would come up and she was going to be fine.

I was elated. Things were serious there was no doubt about that, she was still in intensive care, but she was going to be fine. I phoned Rach and everyone else who waiting to give them the good news. Then I settled into my day interspersed between a little sleep and sitting with Emma. That evening I left for a little while. The plan was pick my mother up from the train station, check in on Rach and maybe have a shower before heading back. So collected my mum and stopped in on Rach, but while I was there I got a call, asking when I would be coming back to the hospital. Emma had taken a turn for the worst. Again, I made the lonely journey to Alder Hey. I was met on my way in to PICU by two consultants and Emma's night nurse Helen. They suggested that we go into a side room to talk. This time the alarm bells did go off. The consultants told me about her turn for the worst, that as the day had worn on Emma's scans had passed in front of progressively senior consultants. The higher they went, the grimmer things seemed. What had been missed up until now was that the muscles in walls of Emma's heart were far to large, meaning the chambers were too small, meaning not enough blood was being pumped round her little body. The outlook at this stage was bleak. I called Rach to let her know and she began to make arrangements to be discharged. Her brother came from Derby to pick her up and drive her to Liverpool. When she arrived she could barely walk, she'd abdominal surgery just over a day earlier and realistically shouldn't have been out of bed. I borrowed a wheelchair and wheeled her up to PICU. We were met again by a consultant. He took us to a side room, again, and explained Emma's condition again for Rach's benefit. This time it seemed bleaker then when he filled me in. We stayed with Emma until the small hours and then went home for a couple of hours sleep.

The next day, my mother, Rach's parents and Laura (Emma's big sister) came back with us to the hospital. We went in to see her in twos. Everyone said how gorgeous she was. No one said how ill she looked. I don't think we saw it to be honest. There was a support worker there who was assigned to us to help Laura understand what was happening. We also met Caroline the chaplain. She arranged Emma to be christened in a simple ceremony that afternoon.

Our parents took Laura home that evening, Rach and I stayed. Not long after they had gone, we were invited to a side room for the last time. We were told that her condition was deteriorating and that to keep her alive they were going to have start performing more and more invasive procedures. We were given the easiest most difficult decision that we ever had to make. Ramp up the amount of procedures, making Emma more uncomfortable with no hope of her surviving. Or we could let her go peacefully. As far as we were concerned there was no decision to be made. We stepped outside and phoned our immediate family to let them know what was happening and went back to the ward to tell them to start taking the tubes out.

Except the ward was closed. They were performing an emergency procedure on some other child and non-staff were sent to the visitors room. That was the most horrible hour of all, just waiting. There were three other parents there, a mother whose son was having hip surgery, another mother with an ill little girl, and a father whose newborn son had some kind of genetic syndrome and was very, very ill as a result. I sometimes wonder what happened to all of them, mainly the father.

When we finally got back to the ward, we told them our wishes. Before moving Emma to a private room they started to tap off some of the redundant medication lines. Rach panicked. She asked them to stop and asked to see the consultant again. She only had one question: "can you make her better?". The answer was no. We were introduced to James, the Berevement.... something. His job was to support families going through, well, what we were going through. At the time he was just a stranger, and what the hell was he doing there? When I think now of what a rock he would be for us over the next few days it embarrasses me that I thought like that.

Emma was moved to a private room. The tubes were taken out. The wires were removed. She was wrapped in a blanket and handed to us. She didn't have the strength left to breathe on her own, not even once. In a few minutes she had slipped away. Emma had left us, less than two days after she had arrived.

We washed her. Put lotion on the dry patches of skin where tape had held in lines. We dressed her in clean warm clothes, and wrapped her in a blanket. We took some photos, and sat with her a while.

Well that's the story. Near killed me to write it, so I think I need a pint now. I think I'll drink to my little girl. Happy 6 month birthday sweetheart.

Wednesday, 21 April 2010

Oh the irony

Can I just say first off that I've written this post on my phone so the spelling is likely to be dreadful. I apologise.

When we were expecting Emma, Rach had a lot of scans. The reason being was that on the 20 week scan, Emma's kidneys looked ( and I quote ) "bright". Cue blank looks from the Moynihans. "Bright" actually means "echogenic". Cue even blanker looks. What all that meant was that her kidneys did not look like they had been formed correctly. At this stage we were given two possible diagnoses; "Adult Polycystic Kidney Disorder" or "Infant Polycystic Kidney Disorder". The Adult version can cause problems but generally doesn't and people tend to live oblivious to the fact that they have it. The infant version is fatal. Incompatible with life. No treatment, nothing. As you can imagine, this scared the living piss out of us. And so we embarked on a journey that consisted of scan after scan after scan.

Rach was scanned every few weeks and each time we had a different story, sometimes it was "kidney function seems fine" others it was "still concerned about the kidney development". They also monitored amnaeotic fluid levels, also an inicator of kidney function. All those little irrational fears and insecurities that couples have during pregnancy were amplified exponentionally.

A couple of weeks before her due date, Rach went to see her consultant on the Friday. The consultant was unhappy with the fluid levels and decided to induce labour so that they could get Emma out to have a proper look at her kidneys. She scheduled for Rach to be admitted on the Tuesday. Over the weekend Rach felt less movement. We went into the maternity ward on Sunday evening so she could be monitored and the decision was made to induce straight away. Eventually they performed a ceasarian on Rach on the Monday night when Emma eventually joined us.

Here is the kick in the teeth. What nobody had remotely expected or noticed in her scans was that Emma had an incredibly serious heart condition. Emma's kidneys were like a red fucking herring in an Agatha Christie novel. All the evidence pointed to the kidneys but in actual fact the butler did it. And by butler I mean severe Hypertrophic Cardiomyopathy. How's that for irony. Like ray-he-fucking-ain on you wedding bloody day.

Here's the thing though. We have kinda learned that there is no point in worrying about stuff. That is not to say that we have become a pair of mellow hippies where things don't bother us anymore. We haven't, to be honest we probably fit and stress more than the average couple. But worrying about stuff that may or may not happen is something that we are better at letting go of. We worried and paniced about Emma's kidneys so much. Now, Jesus, Emma with just a kidney problem would be like a birthday present. The thing we worried about most was a non-issue. The worst thing that could have happened (and did happen) was something we never could have anticipated, much less worry about.

Friday, 26 March 2010

The Things That Set You Off

When I wrote the last post I was feeling lower than whale shit and I'm sure it came across that way. I spoke about how God-awful things were and how they don't get better. That is all true. Here's the thing though, what makes carrying on with your life possible at all is the fact that in between feeling that bad, there are periods of normality. Initially not many, but they do get more frequent and they do get longer. It is nice to know that during these periods I can work, function, laugh, shout at the television during rugby matches and quiz programs, get drunk, read books, play video games, cook, shop, get pissed off at the budget speech, etc. etc. etc. All of the stuff that means that despite the loss, the trauma, the pain, the grief I can still function as a member of the human race. Just. There is one snag though. All the bad stuff is still under the surface. In much the same way that Jaws was just under the surface. And between normality and getting your head bitten off are what I refer to as "The Things That Set You Off"

We have a pet rabbit called Buttercup (that's what you get when you leave the naming of a pet up to a seven year old girl). Buttercup has some personal hygiene issues, which mean that every so often we need to give her a soak in some warm water. I am going some where with this, trust me. This weekened we gave her one such soak. We needed something mild to put in the water so I got some Johnsons Baby Bath that we had in the wardrobe of what was to be Emma's room. I opened the bottle and got a waft of the smell....

....we never had a chance to use that baby bath on Emma, but I'm sure J&J have gone to a hell of a lot effort to ensure that their products have that new born baby smell, just like every other baby clensing product. Just like what we used on Emma to clean her and dress her after she had died. One sniff of the baby bath and I was straight back in that little private room in Alder Hey, cleaning and changing her for the first and last time.

Smells can be a big "Thing That Sets You Off". Music can do it as well. For Rach it's that Rihanna song "Russian Roulette". It's the hook; "You can see my heart beating, you can see it through my chest". The song was out around the time Emma was born. The words remind her off Emma on the respirator, her little chest going up and down. For me it's Elbow's entire "Seldom Seen Kid" album. When Rach was recovering from the caesarian in Wrexham and Emma was in the ICU in Alder Hey I had to make a few trips between hospitals on my own. Elbow was the CD in the machine. It's one of my foavourite records and for months after it killed me to listen to it. I had to force myself to listen to it.

I find new "Things To Set You Off" almost daily. Sometimes it's writing this blog, sometimes it's just standing in the shower. Sometimes they have me in bits, sometimes they make me furious at what I have had to endure. But sometimes, just sometimes they give me a smile. It's nice to know that, like the periods of normality, these smiles are something that happen more regularly.

Tuesday, 16 March 2010

Nothing is the same...

It is now more than four months since Emma died, but things really don't really seem to be getting much easier. I've lost people I've been close to before. My gran died about ten years ago. I was very close to my aunt Kate, my mothers sister who died after fighting cancer for 3 years. I've lost friends, I've lost relatives, some close, some not so much. The big difference between anyone I've lost before and losing Emma, is that losing Emma is not getting easier to deal with as time passes. 

Perhaps if Rach or I had suffered a total emotional or mental breakdown and were now back on our feet, improvements no matter how slight would have been more noticeable, but we didn't. We had another little girl to look after so taking to the bed for 6 months or pouring ourselves into the bottom of a whiskey bottle, tempting as they were, were not options for us. The only descernable change in our behavior since Emma died is that we have both returned to work, and frankly we both feel worse as a result.

A couple of years ago a woman worked at the same company as me. I'm not certain at what stage her pregnancy was at, but she had either a stillbirth or a miscarriage. She was off work for a while, then when it was time to think about returning she resigned. I didn't get why at the time. I do now. It's not what I spoke about in previous posts about how people react to you, either by ignoring or acknowledging what happened, or just looking at you like you're a thing from another planet. It's that they stop doing that. It's that after a brief period of mutual discomfort, they go back to how they were before. But you don't. I'm not the same person I was before Emma died. I look a lot like him, I sound like him, but I'm not him. In a way he died when Emma did and I'm the guy left to fill in for him. He had a lot more energy than me. He could afford the luxury of letting his mind wander, because when it did, it didn't dwell on this god-awful loss. He could also cope with large groups of people. That's not to say that he was a better person, I don't think he was. For a start he wasn't so clear about how important time with his family was, above all else. He also didn't have that absolute certainty that if the worst was to happen (whatever that may be) he could carry on. I do, I know I can carry on if the worst happens because it has and I did. So why does this make work so difficult? Because every day at work I spend all of my time and energy pretending to be that guy that they knew before Emma died. That is why on days before I have to go to the office I can't sleep, that is why when I have been in the office for a couple of days in a row I'm a wreck, and that is why if I had another option, I wouldn't be in the office at all. And that is why I get why the lady I spoke of earlier didn't come back.

I called this post "Nothing is the same" because I wanted to talk about how I had changed, but I also wanted to talk about how loosing a child is so different from loosing anyone else. My father lost his mother when he was 16 years old, but he told me that Emma dying was far worse. He said to me that when some one older dies you bury the past, but when a child dies you bury the future. All the unconditional, instinctive love that you have for family is there, so you feel that loss. You also feel the loss of what you've been cheated out of. When a parent or sibling or any other adult dies you can hold onto the good times, the happy memories. I have one happy memory of Emma after she was born. One, that's it, and even that memory is tainted by what was to come.

 If you are a parent, you will have that first incredibly memory of holding your son or daughter for the first time after they were born. Emma was beautiful. She was a couple of weeks early so she was small but not worryingly so. She had her Rachel's nose and mouth, my cheeks, chin and hair. I didn't want to let go of her even to pass her back to her mum. In those first few seconds she became my whole world. That's how it was for me, think about how it was for you. If you are parent you know exactly what I'm talking about, if you are not, words can't express how overwhelming it is. Hold on to that it?...okay. Now imagine that was the last time you got to hold your child while they were alive.

People say to me that they can't imagine what we've been through. I don't think it's because they can't, it's because they don't want to try. To try to imagine this would be just to horrible, so they don't. I can't say I blame them.

Wednesday, 24 February 2010

When talking to a parent whose baby has died...

There really aren't that many do's and don't's when talking to a bereaved parent. Yes, I know it's like walking on eggshells and you don't really have a clue what to say to them, but that's okay, they don't expect you to. To be honest there isn't really much to say and statements like "I can't imagine what you must be going through" are fine. Yes they will have heard it all before but it doesn't dilute your sentiments.

There is however one mah-hassive don't. Without question the stupidest possible thing to say to a parent who has lost a baby is "you can always try again/have another". Rach and I have been fortunate enough to have heard that one only once, but talking to other parents it does seem to be a recurring theme in what people say. For those of you who haven't quite fathomed how monumentally god-awful that is to say to someone, I will try to explain. First of all, a child dying is not the same as loosing a mobile phone, or failing your driving test, you can't just get another one or try it again. Children are not interchangeable. Rach and I could spend our remaining years breeding like good catholic bunnies, but no matter how many dozens of offspring we could end up with, there will always be a huge Emma shaped hole in our lives which will not get filled. We don't want a replacement baby, we want Emma, and the pain of not having her will not go away even if we are fortunate to be parents again. That's not to say we would love another child less, we just won't miss Emma any less.

Here's the big reason why it's such a stupid thing to say. A parent loosing a child is the worst kind of loss there is. I'm basing that statement based on my experience of losing loved ones and conversations I have had with people who have lost loved ones. And yet, if you were to loose a family member or friend, no one would dream of suggesting you get a replacement! If you were consoling some one who lost a parent how likely would you be to say "Well you can always find another role model figure to look up to and love"?. If a friend's spouse had died would you say "You can always get married again". No, of course not. Why not? Because it's insensetive and it's stupid. So if loosing a child is worse than any of these things... I think you get where I'm going with this.

Friday, 19 February 2010

The Practicalities of Winter-time Grave Tending

There is no end of advise on dozens of subjects when your child dies. Advice on when and how to go back to work. Advice on how to arrange funerals. Advice on how to begin putting your life back together. Here's the thing, no one has published any advice on what flowers to put on the grave during winter-time when the average bloom has the life expectancy of a mayfly.

Rach and I like to put fresh flowers on Emma's grave. Some people use artificial flowers, I understand why, it's practical and its cheap, that said it's not for everyone and we prefer the real thing. The thing about real flowers though is that they don't last, especially with snow and frost. In my life up to this point I have had no interest in flowers but since Emma's funeral in November I've had to become a horticulturalist trying to figure out what goddamn flowers will stay alive on her grave. If you find yourself in a similar situation I have three words for you: tulips, tulips, tulips.

Rach loves gerberas and roses. For those of you not florally inclined, gerberas look like big daisies that come in different colours. For Emma's funeral wreath we chose white roses and gerberas, but even in an oasis they just didn't last. We are fortunate that where we live there are 2 great florists and a weekly market with a good flower seller, and in the town, so we have had the opportunity to try just about every bloody flower type you can think of. Based on this extensive flower testing I am convinced that in the event of a nuclear apocalypse the only things to survive will be cockroaches and tulips. Cockroaches obviously are not suitable as a grave adornment so my recommendation remains tulips. Tulips come in just about every colour and in this especially snowy and cold winter can last outdoors up to a month, yes a MONTH!! Jesus, what are these things made of? Hyacinths are also pretty good, they can last at least a week, perhaps two and the florists today advised that chrysanthemums are pretty good as well. We bought some today we'll see how they last.

We put some fresh tulips on Emma's grave today as well as basket of planted bulbs, something which will loke nice for a little while. We got them from the florists. The florist who did the arrangements for Emma's funeral. They remembered doing the arrangements, they also remembered Rach and I from when we got buttonholes for a friends wedding in the summer when Rach was still pregnant. Rach was upset in the shop and we were both upset at the grave. Sometimes it's just little things that set us off. That said I have been in tears each and every time I've been to the grave.

To end on a light note I'll tell you about probably the only thing that made us chuckle when we were at our worst. When we were arranging Emma's funeral, the lady at the funeral directors wrote down "gerbils" for the arrangements instead of "gerberas". Visually gerbils as part of a bouquet made us howl.

Thursday, 18 February 2010

Back to Work

I've called this blog "A father trying to cope with neo natal death". "Trying" is the operative word in that sentence. Emma was born on the 9th of November 2009 and died on the 11th. It's now more than 3 months on and it doesn't feel much like I'm coping.

I'm back at work now. My boss and everyone here has been great in so far as no one has rushed or pressured me back, but now that I'm here, no one has the slightest clue what to say to me. Some people pretended that I wasn't there until such a time as I spoke to them. Some people just pretended everything was back to normal. Some made the effort to come up to me and ask "How are you and Rach doing?" (emphasis on the word "doing", head slightly to one side, meloncholy and sympathetic smile, optional pat on the arm). They genuinely mean well, but they are pretty relieved when I say something like "we're okay/ bearing up/ carrying on/ taking things a day at a time/ trying to get back to normal/ getting into a routine" (if you've been through anything similar you'll recognise the stock answers). Because they do mean so well it's unfair to give the honest answer that's circling my mind; "Actually, and I'm glad you asked, me, I'm an almighty mess. I am holding on to whatever level of composure I have by a fucking thread and am fighting back tears more often than having cups of tea, and I drink a lot of tea!"

It sounds like I'm being harsh on my colleagues. I don't mean to be. I can't blame them for not knowing the right thing to say to me. I don't know the right thing to say to me. There isn't a right thing to say to me. If people ignore me, I think "why in Christ's name won't you acknowledge the big elephant in the room i.e. my daughter died" if they offer genuine concern, I think "Jesus, you have no idea what to say to me do you?". The emotional side of my brain has staged a coup, hijacking all of my thoughts, the logical side is under house arrest and can only look on as an observer. Well not just as an observer, it also acts as spokesman for the new regime, editing out the crazy and giving out the "we're okay/ bearing up..." stock answers. Propeganda I suppose.

Seeing as I've been so positive all the way through this I may as well end on something that frightens the living daylights out of me. I have lost family members that I have been close to before. It's been tough, but you grieve, you move on and things get better over time so that you can look back on the times you had with the loved one and it doesn't hurt so much. You gradually get over your loss. Rach and I have been to a couple of support group meetings and from listening to others who have lost a child we have found out that you never get over your loss. Ever. You have more children, you still don't stop aching for the child you lost. This gets easier, but it doesn't get better, ever. Not years later, not ever. Jesus, how scary is that?