Thursday, 7 October 2010

Birthday Blues and PLEASE DONATE!

The girls will be a year old this Saturday. A year. We can't work out whether it seems longer than that or shorter than that. It depends what mood we're in.

So it's their first birthday and, of course, this in itself is a big deal. But the thing about Maggie celebrating her birthday is that she very nearly wasn't here at all. If you recall, in those first couple of days we were told that she would die. And then when she didn't die, we were told that her quality of life would be so appalling that perhaps it would be better if she didn't make it.

So Maggie celebrating her birthday is a very big deal indeed. Right?

Remember also that up until that last hour of labour (when Maggie stopped breathing, starving herself of oxygen to the brain) everything was absolutely fine. Shannon had a very good pregnancy, the girls (we didn't know they were girls then) were very healthy. It was just that moment in labour that cruelly robbed Maggie of a good and proper life.

Of course, I say 'moment in Labour' as if it were just one of those things. It wasn't one of those things. As you may know, women carrying twins are supposed to be in the 'high risk' category. Which means they should be monitored and cared for more closely. That didn't happen with us. What we got was a midwife who, while pleasant enough, clearly wasn't that bright or competent. On top of that, she kept nipping out to see to her 'other woman'. For a lot of the time then, when Shannon was hooked up to the monitors, we were alone. Initially, this didn't concern us too much because the labour seemed to be going fine. When it started to look as though all wasn't well, however, this midwife proved to be next to useless. There just wasn't enough urgency or focus. At one point she even joked to Shannon something about not being able to find Maggie's head when she clumsily shoved her hand up in order to attach a probe.

The details of all of this are a bit painful to recall, to be honest. Doctors came in, they pissed about a bit more. Scanning machines were casually wheeled in, they pissed about a bit more. They tried to find Maggie's heartbeat and when it plainly wasn't there, they finally banged the emergency button.

As I stood there like an idiot, a team of doctors rushed Shannon out.

If there's one thing guaranteed to make me cry, it's recalling Shannon's bewildered, hopeful face as she was wheeled out, as she mouthed to me that everything would be okay.

Within minutes I knew that everything wasn't okay. I was left in the labour room alone for a couple of hours. I called Tom who came straight up and we waited together for news.

At one point, our midwife rushed in with a bundle: Alice. She passed me my daughter as if she were hoping that I wouldn't ask about the other one. But I did ask. Her face fell, words were muttered and pretty soon we were alone again.

Shannon had an emergency caesarean. She was knocked out cold and basically ripped open. They pulled Maggie out and desperately tried to revive her. They somehow brought her back to life and she was rushed off for emergency treatment.

All I wanted was to see Shannon. I'd been told by this point how bad things were and I was working out how best to let her know.

I've always had this attitude - and I always used to say it to Shannon - that whatever happens in life, it'll be all right in the end. You know: what's the worst that could happen? Shannon repeated this to me, obviously hoping that I'd tell her that yes, everything would be all right. But I couldn't do it. I tried to tell her, gently, to prepare for things not being all right. I mean, I was half expecting us to be told that Maggie was dead.

For the next few hours, Shannon kept telling me not to worry, that everything would be all right. She kept saying things like: "Come on, you always say it'll be all right - and it will be. I know it will." That, too, when I think back to it, breaks my heart. Shannon trying to be hopeful and optimistic and repeating back to me all the casual, stupid things I say - like how very bad things only seem to happen to other people.

A few hours later we were told that Maggie's condition meant that she would be unlikely to make it through the night.

We fell apart.

We were told that Alice was fine, but with a few problems, and that we could go and see her. We were also told that we could go and see Maggie who was in the intensive care unit hooked up to every machine going. We decided, after much agonising, that we would go and see Alice and not see Maggie. Bear in mind we were told that she only had a few hours to live. We thought that perhaps it'd be best not to see her in the state she was in - so that we wouldn't always have terrible memories of her.

So we went to see Alice and it was devastatingly sad. As we left her, we passed the room where Maggie was. We could see where she was in the far corner of the room. At that moment we knew we had to see her.

So we saw Maggie and it was as heartbreaking and as soul destroying as you can imagine it was.

That night we cried so much that I couldn't believe it was possible to cry that much. We just didn't know what to do. We talked about how you go about arranging a funeral for a baby. And then we realised that our girls didn't even have names.

We'd always liked the name Alice. So we decided that, as she was going to live, she could have that. We struggled with a name for Maggie because what we were doing was naming a dead baby.

The next morning we were visited by Maggie's consultant who said that, against expectations, she'd had made it through the night. But now we were faced with the prospect of her having a quality of life that would be so low that she'd be better off dead. Both Shannon and I agreed that we would go for that option, if that option presented itself, to relieve her suffering.

Things start to get a bit blurry now.

The following day, I think, we were told that again, defying expectations, Maggie was looking a little better. It turned out that she was a fighter.

It was around this point that we gave her the name Maggie. It was on our list, that name, but right at the bottom. We'd already rejected it. But for some reason it seemed to fit. Maggie seemed like a name that you would give to a fighter. So of course there's Thatcher; but it wasn't just that. There was Maggie Bell, the gravelly-voiced, hard-living Scottish singer who my dad loved when I was a kid. And, of course, Rod Stewart's Maggie May.

It seemed to fit perfectly. And it seemed, in a daft way, that if we gave her the name Maggie she might somehow live up to it.

The days that followed were just really bleak and upsetting and nightmarish - in the sense that it all seemed utterly unreal. We cried all the time. I mean, all the time. We saw Alice lots, of course, and we also saw Maggie who was still fighting. But a lot of the time we were alone in our shabby hospital room.

I say 'our' hospital room. I shouldn't have been there. But they let me stay - y'know, as a favour.

So the days turned to a week and...

You know, in all the time we were there nobody from the hospital - and I mean nobody - took a single moment to say to Shannon: "Are you okay?" Nobody there thought to themselves to just ask this frightened, devastated new mum how she was. Nobody at all. The midwife who was there during her labour - we never saw her again. Not a peep. Nobody offered counselling or advice or anything at all. Like I say, not even a "Are you okay?"

Of course, with it being the girls' birthday we're going to be looking back to that time. And thinking about this past year. We've documented a lot of it on this blog. But even there I think we've failed to get across just how terrifying and lonely and sad it's been. And still is.

You read this blog and you'll get a sense of real frustration and anger. That's because it's mostly been me writing it. I can do anger quite easily - and I've had a lot to be angry about.

But like I say, I think I've failed to get across just how much this has hurt us. We put a brave face on it, as everyone does, but I think I've gone a little too far with it. I come across as angry and bitter and determined and capable and strong. But I'm nowhere near as strong as I try to make out.

So for instance:

I've got this stupid double life on Twitter which Shannon finds a little difficult to understand. But it's this: when I'm trying to get Maggie to sleep or feed her while she's howling in my face, my iPhone, and Twitter, opens up a world that's outside of all that. I can literally hold it in one hand and have Maggie on the other. So I can be a little more like me. And one thing I love about Twitter is that it allows me to be a little more human. I can't read books any more, I can't write any more, I can't do the stuff that helps to keep me sane. Twitter, as daft as it sounds, allows me a bit of that.

One of the reasons I mentioned appearing to be strong and capable is that I've been wondering if this accounts for the way certain people have behaved towards us. In all seriousness, I've got friends who haven't been in touch with me - I mean, not at all - since I told them on the first day what happened with Maggie. I find that incredibly sad and it hurts me much more than I've so far let on. We've got work colleagues who say nothing at all to us about the girls. I mean nothing. I'm not saying that they don't say enough or that they don't say things in the right way - I mean they say nothing.

So what is it? Why, over this past year, have some people chosen to have nothing to do with us? Is it because, as I say, we come across as too capable? Do we - I - seem a bit intimidating?

I realise that this probably isn't doing me any favours. I'm just trying to be honest. I'm trying to get across - for once - how lonely and sad we feel most of the time. Believe me, despite how it comes across here, I'm not shouting and ranting and getting annoyed all the time. Most of the time I just feel sad and lost. As Shannon feels sad and lost. And one of the reasons we feel like that is that we've come to realise that we're on our own.

Don't get me wrong though - many, many people have been fabulous. I love my friends who I drink with and have a laugh with and those I chat to on Twitter or wherever. They don't always ask after the girls, but that's not the point - they're there for me.

Talking of always being there for us:

The people at Quidenham have never let us down. Without them I think we might have gone under a while ago. They're not just lovely and friendly and caring - they're extremely professional and have a real understanding of Maggie and of us. We leave Maggie there for a few days and we know she's in the very best hands. Believe me, that's really special.

The sad thing is that they're a charity. They have to struggle like every other charity. They provide essential care and support for people who, through no fault of their own, have ended up on the shit side of life. And yet they have to go cap in hand, fighting for donations. That seems wrong to me. Even if I didn't have a disabled child, it'd still seem wrong to me.

So they need donations. And as it's the girls' birthday, I'd be very grateful if everyone who reads this could nip over to their website and give them a few quid.

Thank you.

EACH Hospitals - Donation Page

Oh, and apologies for all the self-pitying crap above. It's a tough time at the moment, as I'm sure you'll understand.


  1. Crying at work. Again. You do make me into a fool you know. I automatically came to post a comment having finished reading that, and going back through my memories of the past year, the awful wretched feeling I got that night when I got your message about the birth, how I've seen you struggle, crumble, fight & rail against it all, how much love I see in both your & Shannon's faces when I see you look at those girls, how sad I feel when - every now & then (which is your every day) - it hits me again what you've been through, you're going through, and will go through - and that's only the tiny part that I can comprehend, which clearly goes nothing like as deep as living it. Every day. So, (another sentence started with so) I came to post a comment, as I often have before. Except nothing came out. I struggled to put into words the terrifying juxtaposition of love & grief that is your life. And, despite the ensuing ramblings, I still can't do it justice. Bloody love you all. Tara xxxx

  2. I second Tara's point that I want to write something, so you know I'm reading and know that I care, even though I'm kind of a "virtual friend" but I cannot find the right words, suffice to say I will be donating, and I hope the girls have a FABULOUS birthday, and that I understand why this is a very bitter sweet occasion for you. Big hugs to ALL of you xx

  3. I don't know either of you or your girls, but was pointed here by Twitter. I am embarassed by the way people behave, and have come to realise through an illness of my wife's that it is usually from fear of saying the wrong thing or not wishing to upset. But that doesn't make it better. I feel the hurt and fear. I hope you and the girls have a wonderful birthday and thank you for touching my heart today.

  4. I do know you, i know Shannon through work and i am embarrassed to the way i have behaved. I remember a year ago bursting into tears of relief with Shannon in the corridor as i found out my twin niece and nephew had made it into the world safe and sound, knowing fully well how dangerous a twin delivery can be and now these two little monkeys give me great joy as an aunt. They turned one last week and i thought of you, not for the first time, so i dug out an old email to find your blog. All i can do is apologise for taking this long to get in touch. You're right it is through fear initially of not saying the right thing or just not knowing what to say but then as they say time flies. I have two daughters who are my most precious possessions and from me and them we wish you all a truly wonderful first birthday filled with cake and kisses, with much love verity xxxxx

  5. Hi Paul
    hardly want to say 'what a brilliant post' but you know what i mean, it was extremely interesting and moving to read.
    It's amazing how well Maggie has done, and how well you have all coped with such an extreme situation.
    I would like to say i wouldn't be one of those people that disappears when you tell them bad news, but i know so little about disabilities and what is available to families who suffer with such horrible circumstances, i probably would just step back and be silent. However I really hope your non virtual friends can read your post though, and learn it's not difficult to show you care, even if you don't know what to say and what to feel.

    Quidenham is amazing, i'm so glad it can help you all. I wish i was still 7 - 10years old selling cakes to raise money for them but not really knowing what im raising money for.
    Instead i can donate online really easily knowing the kind of families and situations it will go towards and benefit in the future. :)

    Have an amazing Saturday, there is alot more to celebrate than what you anticipated just over year ago.

    take care and i will keep reading your blog in silence!

    Shauna M x

  6. To paul & family.

    im sat here in tears after reading this blog,recalling the night my wife was in labour with our daughter and all the fears and excitement we went through, luckily for us we were blessed with a beautiful healthy daughter.
    i cant even imagine the hell you were going through , but i can see a truly genuine man who cares so deeply and passionately about his family and friends connected to twitter.
    you truly are a remarkable man paul , your humour and honesty shine through and make so many smile on twitter. i for one love to catch your rantings and silly tweets tinged with that awkwardness and rebellious edge.
    i hope you and your family have a truly memorable weekend and i will happily make a donation to the charity you named.

    All the very best to you and yours paul.

    Rich & Family (gt yarmouth)

  7. Yet again you have moved me to tears with such a heartbreaking account of what happened to your family nearly one year ago.

    I have said it once but I will say it all day long, I think you ARE amazing, all of you. Enjoy your day with them both, a big big happy birthday to them both.

    I will have to put my new found love for cupcakes to some use and get some money raised by selling them for EACH. =) I have been thinking about doing this for Children in Need, but this has touched me so much and continues to that I couldn't not try to help in any way possible.

    Good vibrations to you all. xx

  8. I have posted as anon as I prefer to keep the spotlight off but am one of those twitter friends.

    I lost my baby daughter two years ago and it still hurts. I can relate fully to this and you have my thoughts for your story and pain. I will never get over what happened to my wife and I and we have been blessed to have another baby since but I look at my wonderful son and then feel guilty about this.

    I feel angry and pissed off with things but it doesn't help as you just have to get on with it. All the best my twitter friend

  9. For a woman of many words like me, it is frustrating when there are no words. A local landowner holds a Snowdrop walk each February and all money goes to Quidenham; I design her posters for her. I will publicise it all the more now. I wish you all the good in the world.

  10. Hey you, I hope they accept donations form exotic countries like Belgium. I'll definitely give it a try. I think I knew most of this, reading all of your posts from the very beginning last year, reading Shannon's emails and talking to her non-end when we were over in the summer. But this just confirms what I have always thought, that we cannot begin to know...I hardy know you, but I know Shannon pretty well and I am fully aware that despite her amazing brave grace, she must feel utterly crushed on the inside. And she was always like this I think.
    And we over here, looking in, we can't say "it'll pass" as we know it won't. So what is there to say? Ah yes, that it's worth keeping it together, sticking together, loving each other...Soppy but in the end really truly all that matters.
    Big big big kisses and hugs to the girls and to you. Celebrate life tomorrow. And love. And the day after? You'll just take that as it comes, won't you?
    xxx your friend Wini who simply does not know

  11. Words fail. But if I posted nothing, you wouldn't know that someone read this and was moved. My best to you and yours.


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  13. Paul & Shannon,

    I just read this for the second time and for the second time, you got me.

    We've become 'actual' friends thanks to Twitter and it utterly amazes me how much time you have for other people and how bravely you cope with the situation & remain positive.

    Wine money donated and I hope both beautiful girls have a great birthday. I hope their lovely Mummy & Daddy have a fab day too...

    Lots of love...Karen xx

  14. Paul,

    I hadn't read your blog before. It's floored me. Like Anon in comment #3 I guess I recognise the terror of saying the wrong thing, and I've known myself to be like that in the past. I have friends in a similar - not the same - situation... it's taught me a lot. All best wishes to you, from the heart.


  15. Thankfully the IT guys will not let me access your blog at work....otherwise I would certainly be labeled that girl who never has a dry eye. Now I cry in the comforts of my own home....

    I can't imagine the terror the two of you went through just one year and one day ago. I remember the phone call from Paul in the morning, asking for everyone's numbers so you could let them know Maggie and Alice were on their way in. Everything seemed fine, everyone was thrilled. By day's end the world tipped upside down with news that wee Maggie probably would not make it.

    While Maggie as a name means she is a fighter to you....factor in that she is a Saxton and a Forbush and anyone who knows both should know this mean she is stubborn as hell...of course she wasn't going down without a fight.

    I say while I can't believe that a year passed so quickly, maybe not so quickly for you....I also cannot imagine a day when there wasn't Maggie and Alice around. They simply seem to have been around and in our lives forever.

    As if remembering Maggie almost didn't make it isn't bad enough it is fucking gut wrenching to think of my big sister so scared and in such a state by everything going on. It's times like those I really, really hate the physical distance that separates us. I'd even settle for all of you living in NY....since I know Texas is out!!!

    Wish so much we could have been there to celebrate Maggie and Alice's first year....Bring on the pictures very soon!

    Love to you all with some extra hugs and kisses to my nieces, the birthday girls!


  16. My thoughts are with you, but such an empty gesture. Went through the same hell as you guys 30 years ago and sad to say that things don't appear to have improved. Such a raw love we have for our damaged child.
    At this time of year it can only get worse, so emotional. Happiness all around but deep deep sadness too. Puts everything into prospecive, but that doesn't help really. Nothing helped me. Think your anger might just get you through, it did me. Went from a happy, normal girl into a wild, screeching, f.....g she devil, devoid of emotion and not trusting the so called professionals or experts. Their knowledge and advice seemed like crap in the middle of the night. The worst thing is the sheer exhaustion. Only one bit of solid advice have your respite, you all need it. X