Three Years On

Tomorrow morning will mark what would have been Emma's 3rd birthday. It is so weird to think that 3 years ago today we were anticipating our lives changing but we had no clue how much.

This is a shitty time of the year for us. The weeks running up to this date getting increasingly fraught and as soon as the poppies start to appear on people's lapels it feels like the horrible count down has begun.

Posts on this blog have become less and less frequent and that's because I have less and less to say. No that's not true. I have less and less NEW things to say. I could easily week after week jot down thoughts on how shit it is when your child dies and how terrible I feel and how much I miss her, but at a certain point it just becomes scab-picking. But it feels wrong to pass this milestone without marking it in some way.

So I'm marking this time by going back over some old posts that I wrote over the last couple of years.

I write a lot more now than I did back when I started this blog. When I write something now; a script, an article, whatever, after a few weeks go by, when I look at what I wrote I am far enough removed from it that I can look at it with fresh eyes. When I look at the posts I wrote over the last 3 years its almost like they were written by someone else. It's almost like our story happened to someone else. I read posts like the one that documented the two days she was alive http://goo.gl/WaZD0 and I feel a terrible sense of 'what a terrible thing to happen to that poor guy' then I remember that poor guys is me and that this isn't just some tragic story I've read, but my life.

Don't get me wrong. I'm not completely removed from the events. It so incredibly rare that a day will go by when I don't think of Emma, or remember the events of those days or wonder what she would be like now. But after the three years that Rach and I have spent putting our lives back together it's odd to read about another couple who were barely able to function because of how crippled they were with grief.

Nowadays we are a lot better. Not back to how we were before, that isn't going to happen. We still hurt, and grieve and remember, but we also laugh and work and function. And we don't even have to remind ourselves to laugh and work and function.

I'll finish on this. If you are reading this because you have gone through a similar loss then you should know that things will get better. It'll take a very, very long time and things won't go back to how they were before, but they will get better.

Happy Birthday Sweetheart x

Gratitude to a Little Dog

As readers to this blog will no doubt know, when Emma died we were utterly devastated. Rach and I really were broken people living in a state of total limbo. About 6 months after she died we made a bold decision. We decided to get a dog. I know it doesn't sound bold, but Rach had never had a dog and I hadn't had a dog since I was about 4. So we really didn't have a clue what we were letting ourselves in for. But we got a dog. A miniature daschund that we called Pepper.

Oh my God she was so much work. The training, the refusal to walk on a lead, the dog dirt, the peeing, the utter, utter destruction and the expense.

Pepper as a puppy was a nightmare. But somewhere in that nightmare Pepper put us back together again. Having that little dog with that unconditional love just made getting ourselves back together after Emma dying so much easier.

When Rach got pregnant with Aoife. We were genuinely worried about how the dog would be with a baby. Could we trust her? Turns out we didn't need to worry. Aoife and Pepper were totally besotted with each other. Thick as thieves is how we describe them. When ever Pepper got the chance she'd lick Aoife all over despite our best efforts otherwise. Aoife when she is being fed always, quite intentionally drops things for Pepper to eat. In fact Aoife thinks so much of her that her first proper word wasn't "Daddy" or "Mummy" it was "Pepper"!

Rach has commented so often About how grateful she is to that little dog. "She fixed us" she says.

About 3 hours ago Pepper was hit by a car. She was too little and the car was going too fast and Pepper died of her injuries within minutes.

Not since Emma died had this whole family been this devastated.

In memory of Pepper 07/03/10 - 11/03/12 the little dog that fixed us

Father's Day

This time last year, I deleted an entire blog post that never saw the light of day. In it I described how much I hated Father's day, which I did then. I had a pop at the fact that it was not a traditional celebration, just something that was made up in the 20th century to counteract Mother's day. I even pissed and moaned about the placement of the apostrophe, and why it's incorrect on every feckin' Father's Day card ever printed, (not to mention every place I mention Father's Day in this post). But my hatred really just came from how awful I felt. And the worst part of it was that I never saw it coming. I dreaded the onset of Christmas 2009. I knew the first Christmas without Emma would be indescribably painful. Same went for her birthday. But Father's Day was never on my radar. It'd never been a big deal for me growing up. My dad got his card every year, and very grateful he was for it, but we're not a big card giving family and it just was never seen as much of a big deal. For many years now I've had cards and gifts from my step-daughter Laura, and most likely because I give next to no thought to the Father's Day, it's always a lovely welcome surprise. Last year though, Father's Day just seemed to be a 24 hour reminder of everything I had missed out on since Emma had died and as far as painful days went, it overshadowed the likes of Christmas by a long way.

Hence the bitter blog post.

I did however make a decision not to post it. To be honest I'm not really sure why. We hadn't found out that Rach was expecting Aoife until a couple of weeks later so it wasn't that. Maybe I thought it was just too anger fuelled, but that's never stopped me in the past. I think, I just didn't want to attack something that is just there  to make people feel good, even if it made me feel crap. I'd have hated to think of my own father, or Laura reading me rubbish something that involves me and has a positive influence on them.

So Father's Day 2010 wasn't completely useless. My Father's Day present to myself was learning for the first time that maybe I shouldn't vent every bad feeling that comes out of not having Emma around, not even here. I'm glad I didn't attack Father's Day now, because this year, with Aoife, it was significantly better.

As a Father's Day present to myself this year I'm treating myself to another first. This is picture of Emma that I always have with me, and the first time that I have ever published it or any other picture of her for the world to see. You lot can now see how beautiful she was.

I'm Still Here

Well its been a while. And for good reason,  June last year we found out that Rach was pregnant and in February, our little girl Aoife was born. Somehow it didn't seem right that I use this blog, that I started to talk about loosing a child, to talk about a new baby. But recently I've been thinking that perhaps I'm wrong.

First of all I'd like to say that Aoife is absolutely fine. She has been examined by consultant after consultant both before and after she was born. There is no sign whatsoever of the heart condition that Emma had. *BIG SIGH OF RELIEF*. But the worry that the same thing might happen to her has been crippling. About 11 weeks into the pregnancy we had a massive scare and it looked like we were going to have a miscarriage. It was a false alarm but frightened the living piss out of us and resulted in Rach being signed off work for the remainder of the pregnancy. And thus the tone was set for the pregnancy, and the tone was shared shitless. We would be asked things like - "what are you hoping for?" The honest answer to that question is "a child that will survive".

Aoife getting born did not eliminate all that fear, not helped by the fact that a couple of days after she was born she was hospitalised for weight loss. She was discharged the next day. A couple of days a spot on her back was another cause of concern. Back to the hospital.

Because Emma's condition was not picked up until after she was born and because we as parents had a history of neo-natal death all the health care professionals dealing with us have been extra cautious. Grateful as we have been for this caution, it has lead to a policy of "lets get her looked at in hospital, better safe than sorry" a policy that has nearly had Rach and I at our wits end.

But time has gone on and Aoife is fine. Better than fine really, she is really starting to respond to what's going on around her, she's smiling and she's babbling to us, and it's amazing. And now everything that happens with Aoife serves as a reminder of what we missed out on with Emma. Aoife is only 11 weeks old and already she has changed so much, Emma would have been 18 months old tomorrow, I can hardly imagine how she would have been now.

If I can leave you with one thing it's this - For parents of a child that has died, having another child does not make it all better. New babies are time consuming and energy sapping, so it does distract from the pain. But it's still always there.

On Eastenders...

Word of warning. This post is written by Angry Mark, and as such it'll contain language that may offend, you have been warned.

This is a bit of a weird post for me for a couple of reasons, first of all because this is the first (and likely to be only time) that I put the same post on both my blogs. The second reason that this is weird is that this is that generally I’m not the “Points of View”, Mail reading whinge-bag who moans about the BBC, I’m not that dude. But I for the probably the first time in my life feel compelled to add my two cents to the Eastenders cot-death/baby swap debate. Okay the reason I’m commenting on this is the same reason I am writing this on both blogs. First up, those of you who read “Living Without Emma” may not know, I am an amateur scriptwriter and film-maker. For those of you who read the “Little Things Movie” blog, my daughter Emma died from a rare heart condition when she was just two day old and it’s as a writer and as a father I feel like I want to comment.

First up I just need to say I don’t watch Eastenders, and I missed the whole media kerfuffle about this story. I just turned on the TV a couple of nights ago and saw the ongoing elements to the story. The five minutes I saw pissed me off but I thought I’d look into it before passing judgment. Right, I’ve looked into it and I’m gonna pass serious judgement.

For those of you that don’t watch or don’t know what the hell Eastenders is, the offending story goes like this. Two women called Ronnie and Kat give birth to boys on the same day. A week later, Ronnie’s baby dies. Due to some ridiculous set of circumstances Ronnie, swaps her dead baby for Kat’s live baby. So now Kat thinks her child has died and Ronnie has a baby that isn’t hers.

Okay, there are two main reasons why this is horseshit. Firstly and most obviously I can categorically tell you that any parent whose child dies has no interest whatsoever in a replacement child. They want THEIR child, the idea that the notion of taking another baby would enter the head of a bereaved parent is utter bollocks.

Secondly, Emma was with us less than two hours before she was taken to the Special Care Baby Unit. In that time she was so firmly imprinted on my mind that I could pick her out from a room full of dozens of babies even after she died. To portray parents who’ve had their baby home for a week as being unable to tell that the baby was theirs is ludicrous. You don’t have to be the parent of a dead child to know that, just a parent.

In the interest in symmetry there are two things about this storyline that piss me off. One is because I’m Emma’s father and Rach’s husband, the other is because I’m a writer.

As a father to a child who’s died, I’m pretty thick skinned. Yes certain films and things resonate with me and can upset me, “Wires” by Athlete and the opening montage of “Up” nearly bring me to tears every time, but I don’t get offended by stuff, I watched Lars Von Trier’s “Antichrist” and didn’t get offended for God’s sake. But Eastenders pissed me off and this is why. When you’re child dies people avoid you like the bloody plague, they look at you like you’ve got ten heads, and don’t have a clue what to say or do around you. That’s not everyone, but it is a lot of people. Neonatal death is not something often covered in the media and for a lot of people soaps are the only way that they are aware of issues, so to portray a mother of child who dies as a baby snatching lunatic, how the hell is that responsible? Yes you may say that people know that it’s not real, but people are not always that smart. I’ve heard so many instances of actors who play villains on soaps getting accosted and attacked by people who can’t separate them from their characters. Thanks Eastenders, you have made things potentially more difficult for people who are going through hell.

The other reason I’m pissed off is because I’m a writer. Little Things (my short film) is partially about someone with a magical ability to alter the course of destiny. That doesn’t really happen, therefore when including this in the story I can do whatever the hell I like. Babies really die, so do you’re goddamn research. Yes, I know it’s a soap, yes, I know it’s for dramatic effect, but this is something that really effects people. A hell of a lot of people. With viewing figures in and around 10 million it’s probably going to effect some of the people who actually watch your crap. Sticking websites and helpline numbers on the credits does not mitigate any of this. Do your research you fucking hack!

Angry Mark Out.

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

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.