‘…And We Make This World Our Hell.’

This is the 5th year I have run a fundraiser for Bliss, the premature baby charity. At the beginning, I didn’t realise it was the beginning, not having particularly envisaged it becoming a yearly event, but these things happen as they do.

The format has broadly remained the same, and has merely evolved a little in terms of scale and complexity.

In 2008, the sun shone, I made cakes, kind people came, John ate lots of coffee & walnut cake,

cake-reach

and Harry began to understand that chocolate cake was a Good Thing.

cake-chomping

In 2009, I made cakes, the sun shone, kind people came,

CAkes 

and John made a beeline for the coffee & walnut cake again.

cakes 2

I opened my Justgiving page in 2009, and the wondrous, generous internets promptly blew the bloody doors off my fundraising target.

In 2010, I inexplicably appeared to take no photos, but I’m pretty sure that I made cakes, kind people came, it absolutely pissed down, and John… etc. The internets were good enough to bear with my paragraphs of RANT regarding the NHS dropping a neonatal bollock, and still donate in droves. Possibly you were paying me to shut up, but it was all good. (Updated: I am wrong. The sun shone. I have Found A Photo.)

In 2011, also photoless, I was so very angry and bitter. But there was, undoubtedly, cake and kind people a-plenty, both on and offline. I forget what the weather did. (Updated to add: this must have been the year it pissed down)

This year, I have occasionally wondered why I am putting myself through the expense and bother of it, which is, without wishing to inverse-preen, considerable.

16 cakes to make. 4 stalls to organise. Flyers to print. Raffle prizes to sort out. 75 adults & children in attendance. A house to be tidied – which is usually the straw that breaks the HFF camel.   

There are a number of reasons why I could quietly call it a day, I suppose. People will tell me I have Done Enough now, in terms of fund- and awareness-raising. Yet it is ultimately a cause to which I still find myself attached on a number of levels. The state of specialist neonatal care concerns me gravely. The likelihood of my needing specialist neonatal care for any hypothetical future child of mine is extremely high, so a degree of altruism is also a factor.

But I think the most fundamental reason I continue, and plan to continue, is the memory of when I failed to Do Enough.

I was sat quietly in our dining room a fortnight or so back, planning for today, when the memory of Harry’s lumbar puncture suddenly overcame me. He was 2 or 3 days old, and not doing so well. They suspected sepsis. I know, now, what the hideous procedure entails, and looks like. I have made it my painful business to find out, in the years since, because I didn’t stay to watch Harry’s. The staff nurse told me – unequivocally – to leave the ward. It is not a procedure they wanted parents hanging about at. It is a tricky procedure in newborns, with success apparently owing as much to luck than judgement.

And although I felt I should stay, I went; unusually conformist. I was glad to go.

The medical team who told me to leave cannot possibly have known or foreseen how deeply my departure has tormented me in the years since. It was an event at which there was apparently no place for me to stand and no task for me to perform, yet my only role, as I see it now, was to be there with my son.

To witness his suffering, even if the seeing of it was futile. To share his pain and distress, even if I couldn’t alleviate it. To speak his name, even if he couldn’t hear or understand me.

Harry’s severity of struggle in his early days of life was simply too much for me to cope with, and for every hour I stood at his bedside, I spent 2 hours hiding away from it somewhere. I was in deep shock, un-personned, fundamentally overwhelmed, shatteringly undone by the sight of Harry’s tiny, helpless fragility. I saw no discernable path to functional motherhood, and no certainty that he would live long enough for me to find one.

It’s an utterly insignificant time, you might argue, to regret so deeply, when the joys and pedestrian frustrations of parenting our child with extra needs involves, on a daily basis, so many avoidable lettings-down, temper-snappings, misunderstandings and needless tears. In the scheme of things: it’s 5-year done-and-dusted, my behaviour was quite understandable, unremarkable to anyone except me, and Harry cannot possibly remember. The putative benefit of my presence that I took from him was likely minimal. As one particularly brainless young nursing assistant said to me, 3 weeks later, in SCBU, ‘it’s not as if he knows you’re here!’

Untrue, I think, and my cowardice is an ulcer of misery – usually dormant, but unchanging – and if I could go back and re-do anything – anything – in my life, those days at his hospital bedside would be it.

All the very best personal demons are capable of appearing suddenly, unsummoned and unleashed. Shame is quite a potent demon, I find. Quite enough to turn my quiet sit-down in the dining room into a sob-fest of epic proportions, anyway. And so… I continue to make cakes,

because no parent deserves to feel how I have felt, even if I have sometimes deliberately invoked my own demons. I continue to support Bliss‘s drive to improve care facilities, staffing levels (God, just… awful) staff morale (see previous parenthesis) and political priority for sick neonates.

And I continue to be appalled by the UK’s deaths per 1000 live births rate; a good indicator of neonatal care standards. A triumphant 35th in the world!

1 Monaco 1.80
2 Japan 2.21
4 Singapore 2.31
3 Bermuda 2.47
5 Sweden 2.74
6 Hong Kong 2.90
7 Macau 3.17
8 Iceland 3.18
9 Italy 3.36
11 France 3.37
10 Spain 3.37
12 Finland 3.40
13 Anguilla 3.44
14 Norway 3.50
15 Germany 3.51
16 Guernsey 3.52
17 Malta 3.65
18 Czech Republic 3.70
19 Netherlands 3.73
20 Andorra 3.76
21 Ireland 3.81
22 Jersey 3.94
23 Switzerland 4.03
24 Israel 4.07
25 South Korea 4.08
26 Slovenia 4.12
27 Denmark 4.19
28 Austria 4.26
29 Isle of Man 4.27
30 Belgium 4.28
32 Liechtenstein 4.39
31 Luxembourg 4.39
33 European Union 4.49
34 Australia 4.55
35 United Kingdom 4.56
36 Portugal 4.60
37 Wallis and Futuna 4.61
38 San Marino 4.65
39 New Zealand 4.72
40 Cuba 4.83
41 Canada 4.85
42 French Polynesia 4.88
43 Greece 4.92
44 Taiwan 5.10
45 Hungary 5.24
46 New Caledonia 5.62
47 Northern Mariana Islands 5.69
48 Faroe Islands 5.94
49 United States 5.98
50 Croatia 6.06

I want to see a time in which all babies will be born healthy, and no parent has to watch their child die. It probably won’t come in my time, or in Harry’s, but it won’t come at all unless people continue to hope that it might.

If you hope for this too, and find some spare change down the back of your sofa, http://www.justgiving.com/DarthToddler would be a good place to deposit it.

Shall we end on a happy note? Shall I tell you what the cakes were – that you didn’t get to eat? You will note there are 16, not 14, or even the 11 pictured yesterday. I can’t count when I’m sober, let alone drunk. (I suffered all day, incidentally. Deservedly. But at least the sun shone.)

Top left behind Harry, and working down in columns:

Coconut Lime Cake

Coffee & Walnut Cake (sterling work by my mother)

Lemon Drizzle Cake (also mother’s)

Ann’s Quadruple Ginger Cake

Date & Caramel Cake, then

another Coffee & Walnut Cake (Mum, because she Knows Her Son-In-Law.)

Chocolate Orange Cake (Mum)

one corner of an enormous Chocolate Fudge Cake, then,

Raspberry & Almond Cake (Mum)

Dandelion & Burdock Cake

Fruit & Malt Cake

Torta Alla Gianduia, then

Honey Crunch Surprise Cake (my concoction; popping candy was the surprise, but I don’t know how effective it was, because it had all gone by the time I came grazing)

Ann’s St Clement’s Cake.

Carrot Cake

Strawberry Cream Sponge Cake.

I have a tin of assorted slices left if you are passing…?

PS I am 2 hours late again. Feck!

9 Responses

  1. Late…depends upon the reader’s time zone. I call it good from where I’m sitting. What’s in Dandelion and Burdock cake? I am intrigued.

  2. Late? Just say you’re on New York time, in tribute.

    I’m sorry I couldn’t make it yesterday, it would have been lovely to see you, and lovely to eat the cake.

    Those statistics scare me, and they shouldn’t be so damn rubbish. There’s a lot I want to say about NICU, and the fact that I think you’re an amazing mother, but I don’t have the right words this morning, so I might come back to that later. But for now, just let me say that Harry is gorgeous, bright, and funny. As are you, by the way.

  3. Yup. What you said. You are my hero.

    I still live the feelings of standing in a cold dark miserable hospital corridor in the middle of the night whilst my baby had a lumbar puncture. His screams racing along the hall towards me.

    Your cakes are triumphant Mrs!

    M x

  4. You could open a cake shop – your cakes look wonderful. And that Harry grew up gorgeous.

  5. I know the guilty feeling. Hours after my son was born his blood sugar tanked. He was lapsing in and out of a coma right in front of me. Though the wards were just a few hundred feet away from each other, I stayed behind as he was taken to the NICU for the IV that would bring him back to consciousness. My spinal had just barely worn off after my c-section and I felt that trying to go with them would slow them down, so I told my husband to go while I remained in bed. When I did finally hobble my way to the NICU almost an hour later, I couldn’t even remember what he looked like. (It had been a long labor before the surgery and we’d both nearly died during the birth itself. I wasn’t in any shape to be up, really.) The NICU he was in makes these strands of beads for every little patient. They have their name, a bead for neonatal admission, a bead for every procedure, a bead for certain good or bad things, et cetera. In my absence, he’d earned the bead for Bravery — for withstanding more than 20 tries to start an IV in every part of his body before they finally succeeded. The kid looked like a pincushion and had blood everywhere from the blown veins. Sixteen months later I can still see the scars from some of them. The backs of his hands, the tops of his feet, even the ones on his forehead when he’s crying hard enough. It kills me to see those pinpoint scars and know that not only did I abandon him in his time of need, I couldn’t even remember what he looked like to find him again when I finally did go to him.

    I told you that to tell you this: You absolutely did do enough. The mama guilt is just too strong to let yourself recognize it. I’ve been quietly lurking for a long time. You had such a difficult time with your pregnancy and with his premature birth. You needed time to take care of yourself and heal so you could start on a good foot with Harry when he came home — even if you only had the faintest glimmer of hope that he’d come home. And I’d bet anything that his medical team had an easier time of the lumbar puncture without also worrying about a nervous mama watching the whole thing.

  6. I echo Manapan – knowing you’ve probably heard this before – but my sister is a type of doctor that regularly does lumbar punctures (not on babies) and I know she would vastly prefer to be concentrating on the patient and the procedure without the added pressure of a loved one watching. It’s possible your leaving made their job easier, and thus easier on Harry.

    In any case – rock on with your fundraising. I hope Bliss are suitably grateful for it.

  7. Sometimes it is better to be absent and eternally guilty than present and eternally guilty. I doubt you would feel any better about it if you had been there. But it’s a good thing you do, regardless of the reason you do it.

    Also, the cakes look delicious!

  8. I’ve just written such a long comment, that it was a bit too much. So I’ve sent it to you in an email instead. Hope I’ve got your email address right.

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