Thursday 30 July 2009

Miracles

Lately I've read quite a number of posts about 'miracle' babies and how hurtful these stories can be to people who have lost a child. As you know, I've got a foot in both camps here. For whatever reason, a reason that even I am not entirely certain of, this blog has been mainly about Georgina. The twin that did not survive.

Maybe because I have nowhere else to talk about her anymore, not in real life. I suppose that this could have been a blog about my miraculous micro-preemie, Jessica. But it isn't. I question why it isn't myself. I don't think it is because I am ungrateful. I hope that I don't come across that way. I tried to reflect the nature of this blog in its title. I feel as though I was torn in two the day I met my girls, I don't think I will ever be able to stick myself back together. Not seamlessly. Not without cracks.

I don't particularly like stories about 'miracle' babies myself. I don't like seeing all the too-familiar equipment in the accompanying photographs. I don't like the way that I always have to read them, to mentally jot down the gestation and the birth weight and compare them to my girls. I hate the suggestion that the survival of very sick or very premature babies has anything to do with the 'determination' of the mother or the 'fighting spirit' of the child. I'm afraid that I don't believe in miracles, if the word is being used to imply the direct intervention of a higher power in the workings of this world.

I am told frequently that Jessica is a 'miracle' and I don't generally debate the issue or even take particular objection to the term. I think she is a miracle. I have no other word for the combination of medical technology, luck and biology that conspired to result in her being here today, sleeping in the next room. It knocks the breath out of me on a daily basis. I simply cannot believe that a child so small, so vulnerable, so very, very sick at times is still alive. A miracle seems as good a word as any.

Nobody will ever mention her twin, nobody will ever call my sweet Georgina a miracle. And she was. She really was. A miraculous person. My daughter, I wish you could have seen her.

All of our babies are miracles. No matter what happens.

The waiting room of the NICU where the girls were taken was plastered with incredible stories of survival against all the odds. I appreciate that these stories are placed there to provide hope to parents but I can't help but wonder if they sometimes inspire false hope. Understandably, there aren't any stories about the babies that die in the NICU.

I remember desperately searching for babies of the same birth weight or of a similar gestation who had survived. In the corridor was a newspaper article about twin girls, of similar birth weights to Jessica and Georgina who had been resident in the NICU the previous year. The twins had survived and gone home after a stay of several months. In the few days that Georgina was alive, I stopped and read that story every day. I hoped, wished and prayed that I would be that mother, that mother who took both her daughters home. But I wasn't. And I couldn't stop by that particular notice board again, after Georgina died. I just didn't want to see that mother's smiling face, I hurt too much.

Google reader recommended that I read a blog about surviving life with twins, it is not the most tactful of technological gubbins and obviously does not have sufficient powers of discrimination to tell that the reason I'm writing this blog is entirely because I don't need such advice. To torture myself, I clicked. The article that came up was about 'single baby envy'. How much twin mamas envy women with one baby. I very nearly posted a comment. But I didn't. In another world I'm probably typing a comment saying how I wish that I could have one moment of peace or sleep or relaxation and just one baby. Sadly it isn't this one, not this world, not this time around.

And in that other world, the world where I have a Jessica and a Georgina who were born healthy and at term, I don't have a clue how lucky I am.

Sometimes I worry that I am that woman in the newspaper article, the smiling woman with her 'miracle' twins who doesn't quite know how lucky she is.

Sometimes I worry that I am that woman writing a blog article about single baby envy, that woman who doesn't really understand how lucky she is.

I know I must be at times. I suppose I'm just trying to say that I acknowledge that.
I know how it feels when your baby isn't the 'miracle' baby who defeats the odds and lives.
I know how it feels to walk out of a hospital and know that one of your children will never come home.

But I don't know how that feels when it doesn't occur simultaneously with another one of your children being the 'miracle' baby. That is all I know.
These two experiences occurring at the same time.
That is how my first and only experience of pregnancy and childbirth worked out.
So very unlucky.
So very lucky.

Sometimes I hear an old Massive Attack tune playing in my head 'just be thankful for what you've got.'

Wednesday 29 July 2009

Doubts

Lately I am full of doubt. Doubt that I can do anything right.

My comment amnesty was inspired by a post of Angie's worrying that her comments were meaningless drivel. Which made me think to myself, oh heck. If Angie (a writer of unquestionable articulateness and eloquence) considers her comments to be meaningless drivel, mine are meaningless drivel twice over with a cherry on top. And chocolate sprinkles.

But I'm actually fine with my comments or my posts being meaningless drivel. I'm sure that they often fall into that category. What I don't want them to do is hurt people. That is the exact opposite of my aim. I know it is inevitable that I will write stupid, hurtful, ill-considered things from time to time. I'm sure that we all do once in a while.

But I can't stand to think of hurting someone who has lost a baby. I couldn't stand to hurt anyone whose blog I comment on, with my good intentions but occasionally clumsy mechanics. I suppose that the recent appearance of a few trolls in these parts made me realise just how very much I would hate to hurt someone. Someone who has already been hurt beyond all imagining. I know that the nasty comments left by trolls are written to provoke but they never fail to make me feel sick to my stomach. What motivates these spiteful people I have no idea. I'm a bit worried that there are people in this world who have nothing better to do with their time than

(a) roam around the internet

(b) discover the existence of blogs (I don't think that I really knew they existed until about six months ago)

(c) discover the existence of blogs about dead babies

(d) read these blogs and . . . .

(e) sit and take the time to concoct a spiteful comment.

? ? and again ???????

It took me ages to find these places and I was actively looking for people in a similar situation. Why are these people not outside enjoying the sunshine, or the rain, looking at the flowers, playing a game on their computers, talking to their friends, or reading blogs about other topics or just doing something, anything else? They won't get those minutes back, those minutes they spent reading, planning and then writing nasty things. Is that really how they want to use up their finite lives? Hurting random strangers over the internet? My mind boggles. What is wrong with these people? I wouldn't like to hazard a guess.

And yes, yes I'm sure that you will all come and be troll-like over here now.

But rather here than elsewhere I suppose. Bring it on. Be mean. It's your life you're wasting and I'd rather you were mean to me than to someone else. Assuming that there is some limit on the number of people you are mean to per day. Which there probably isn't.

What I write on my own blog doesn't matter, if people are upset by my situation or how I write they can cross me off their list. That might not deter me from commenting on their blog though! Once I've started, I'm kind of hard to put off. So I suppose I was trying to give folk the option to opt out of my stalkery, commenty tendencies.

Sunday 26 July 2009

Things fall apart

Everything started to go wrong from that point forward. The day that I found out I was expecting twins I went from being 'the most healthy, normal pregnancy' on my midwife's book to a high-risk pregnancy.

I did start to panic a bit more. The midwife I was seeing kindly agreed that I could go in to see her more frequently as I was becoming anxious. For the remaining eleven and a bit weeks of my pregnancy, I visited the surgery once every two weeks to listen to the heartbeats. I will never forget the sound. I used to head back into the car park with a grin a mile wide.

I only knew that I was expecting twins for eleven and a half weeks.

I got precisely what I desired. A baby. A baby girl. My heart's secret wish. If I was honest, I wanted a girl. It has an almost fairy-tale like quality to it. You will get your heart's desire but you have to make this Faustian pact. The happiest time of your life will also be the saddest time. You will look at the daughter that you love so much and it will always be just slightly unsettling. Her shadow sister.

At the twenty week scan, the news was not great. One of the girls (as we found out) had a pericardial effusion, a collection of fluid around her heart. I remember crying in the quiet room, where they take the parents who are getting bad news.

We were referred to fetal medicine at a larger hospital. We had two detailed scans. We saw a neonatologist, a paediatric cardiologist. The effusion was small. They saw no cause for concern from the ultrasounds. I was frightened but still certain. Certain that I would be holding both my daughters in a few months time.

But I was wrong. I would never hold my daughters at the same time. Not in my arms.

It was the bank holiday weekend in late August. Things were normal.
One of my dear friends had just come back from a year out in Australia and we met to catch up on news and gossip.
My husband and I had been watching Reading Festival on televison. We are veterans and had been the year before, knowing it would be our last until the 'kids' were old enough to go.
I had arranged to go and meet up with a twin mama friend the next day, to be trained in the mysterious ways of looking after two babies at once. I have to admit I'm still not entirely sure how they do it.

On the Monday evening the backache that I had been nursing all weekend suddenly became worse.

By about midnight I gave up trying to sleep and got in a warm bath which seemed to help. Then I told my husband that I would sleep in the guest bedroom as he had an early start the next day and I didn't want his sleep to be disturbed. I spent the next few hours moving between the bed and the bath. I thought that it might be Braxton Hicks or just a bad back from having such a big belly. By the early hours of the morning, I was dozing off then crawling on to the floor and rolling myself up in a ball, crying with pain. Then the ache would ease and I would get back into bed thinking that it wasn't so bad after all. Eventually I had to concede that something was awry. I'd been hoping that if I could just get off to sleep then, come the morning, everything would be fine. I never put two and two together and realised that I was in labour. As my friend said, 'higher education was wasted on you Catherine.'

By around 4am, I had started bleeding. My husband was awake and he kept saying that we should go to the hospital. I kept arguing as I just didn't want to hear it. I knew that something was going wrong and I was sure that they were going to tell me that I was having a miscarriage. How naive I was, I had no idea what a second trimester miscarriage is like. I thought I would bleed and they would tell me that the babies were gone. Then they would send me home. Actually giving birth never crossed my mind.

I finally admitted defeat and went to accident & emergency. Everything from that point on is a blur.

I remember the doctor telling me that she was going to send me up to the delivery suite but I kept thinking to myself. Why? Why is she sending me there? She told me that I was over 6cm dilated but I still didn't quite grasp it.

I remember the porter pushing me along on a trolley. I remember apologising to him that I was so heavy.

I remember the delivery suite. I was lying on a bed, in a hospital gown. The midwife was telling me what was happening but I just kept saying "it's too soon, they can't be born yet." Just repeating myself. Over and over. And then saying how sorry I was.

They tried to stop the labour. They told me that they were giving me something to stop it and that every hour I could hold on would help the babies. I almost relaxed a bit then because they were saying that there was a possibility of helping the babies and I thought that they would stop the labour. They asked me how far on I was. 23 weeks and four days that morning.

But they couldn't stop it. I had some gas and air as the pain across my back was getting worse and worse. I don't know if I should have had the pain relief. I don't know if I was in enough pain to justify it. I remember hearing the woman in the delivery suite opposite screaming. I felt sorry for her. I felt jealous of her.

I remembering holding my husband's hand. I was apologising to him. Then I would turn and apologise to the midwife. There were a lot of people in the room.

I didn't know what to do. I'd never had a baby before. I'd never even been to an antenatal class. I remember grunting with pain and effort. I'm ashamed of that now. Such little babies, surely it shouldn't have hurt me as much as it did.

One of the nurses gave me a steroid injection for the twin's lungs. That was the only time I yelped. Somehow that seemed to hurt more than the rest.

Georgina Jane was born at 7:08am on the 26th of August weighing 1lb 10oz (around 750 grams) She was born silently but she was alive. They held her up for me to see. I was ecstatic which seems stupid given the circumstances but I was. Completely flooded with happiness, with love. I was going to meet my daughter. She was surrounded by people. A doctor, a young doctor with curly hair. Nurses. Equipment. I couldn't see her from the bed.

Jessica was born at 7:33am on the 26th of August weighing 1lb 7oz (around 670 grams). She was born with a cry. A tiny cry that sounded like a kitten. I didn't see her. She was taken to a table behind me and I couldn't turn around far enough to see her. Her placenta broke and the doctor needed to deal with that so I couldn't move to get to her.

They took both of the babies away. The curly haired doctor came back and told us that there was a slim chance that Jessica might survive but a vanishing chance that Georgina would live. I was amazed, I had assumed that they would both be dead.

I had gone from no babies, to one baby, to two babies, to no babies, to two babies in such a short time frame. My head was spinning. I was taken in a wheelchair to see them in the SCBU.

They were both so beautiful. They were beautiful beyond my ability to tell you just how beautiful they were. It is hard to imagine but that is where we all begin. Every single one of us human beings. We have all been those tiny, delicate creatures. But in a hidden, secret place.

In those tiny, tiny bodies. In fragile shiny skin. With those tiny, skinny limbs. Those thin rib cages. Inhabitated by human beings. Distinct human beings. It seems obvious yet completely incomprehensible at the same time. How could it be? How could it not be? Humans? My children? Of course they were.

Jessica was closest to the door in a white hat. The smaller baby. I rushed to see her as I had missed my chance earlier.

Georgina was in the next incubator to the left. Wearing a pink hat.

I loved them so much. I love them so such. My girls.
It seemed as though something had gone horribly wrong.
It also seemed strangely inevitable. No surprise.
That these would be my children.
These tiny, beautiful beings. Not the babies that I had imagined.

******

And because I said I would at Angie's beautiful blog, Still Life With Circles.

I hereby declare a Catherine W comment amnesty.

If you are fed up with receiving my lengthy comments, often replete with spelling mistakes, grammatical errors, typing glitches and stupidity, do let me know. You can leave a comment here if you wish to humiliate me publicly or you can send me an e-mail if you want to be kind about it.

Wednesday 22 July 2009

Expectations

I loved being pregnant. I was surprised that I did. The thought of being pregnant used to frighten me a little. I always imagined that it would feel as though I had been invaded by aliens, that it would feel creepy, that my body would no longer be my own. But, as it turned out, I enjoyed sharing.

Shortly after I found out I was pregnant, the office that I was working in was relocated. This meant that I had about a 45 minute commute down the motorway every morning and evening. I really enjoyed the driving. It was quite pleasant going in the summertime. I love singing in the car. I can't sing but I still love to sing. It's probably best that I usually drive alone. I used to sing the girls all the songs my mum used to sing to me when I was little, Leonard Cohen, Bob Dylan, Joan Baez, nursery rhymes, nonsense that I made up. I used to talk to them about what I was going to be doing that day, I used to tell about all the fun things that we would do once they were born, I told them all about their cousins and aunts and uncles and grandparents. Nothing profound, nothing clever.

I used to laugh at my tummy in the bath, sticking out like a little island. It would go a little lop-sided when both babies moved to one side. I used to stroke them and, in a strange way, I even loved my own body more whilst they were inside it. I have never liked myself much. Until they were there. Then it didn't matter, my body was keeping them safe.

I hope that Georgina heard me, that innocent burbling away, that tender drone of her mother, voice, heart, internal organs all swooshing around her as she swam inside. I hope that she could feel my love, hear my love. I never had the slightest suspicion that she would die. If I had, I would have tried to love her even more.

I didn't feel very well physically throughout my pregnancy with Jessica and Georgina. I felt very nauseous all the time and was particularly triggered by smells. For some reason, I couldn't bear the smell of the fridge even when it was empty. Or the smell of the office reception but that could be because I associated it with going to work. I'm a bit lazy if I'm honest, I sometimes don't relish getting up to go to work.

Once I was walking behind a lady smoking a cigarette and I caught a waft of her smoke. Now usually I like the smell of cigarette smoke, it reminds me of my very dear godfather who smoked Camels like there was no tomorrow. I used to smoke myself when I was younger. Argh, it made me feel so sick. I threw up in the bushes outside the work car park. It was so horrible, I tried everything. The pressure bands that they use for travel sickness, ginger biscuits, dry crackers, eating nothing, eating everything in sight. Nobody recommended that last one, I came up it with all by myself. Sometimes stuffing my face truly seemed to work.

I don't know if I will ever be that truly happy ever again, pregnant or not. I hope that I will be. I hope that if I ever fall pregnant again I will throw every bit of love I still have left to give at that baby. It is all I have. Even if I have another preterm labour.
That time is all that I can ever offer Georgina. That and the three days she survived outside my body. Whilst she was alive she was very, very loved. And I love her still.

I can still remember the first little crack in that certainty. That first inkling that something might, just might, not go according to plan. I was walking along listening to my iP.od and a particular song came on, The Dark is Rising by Mercury Rev. I've tried to link to it here but I'm not very good at all this technological stuff so it might not work. The video is on YouTube if you are interested.

The words suddenly seemed to take on a new and unwanted meaning for me. I suddenly knew how very, very much I wanted these babies. Both of these babies. I remember sitting down on a bench on the way home and crying. Of course, with hindsight, it is easy to imagine that this was some sort of premonition but I don't really believe in such things. Do I?

I dreamed of you on my farm
I dreamed of you in my arms
But dreams are always wrong.

I never dreamed I'd hurt you
I never dreamed I'd lose you
In my dreams, I'm always strong.

I never did. I never dreamed I'd lose her. I thought that I was strong. Until that moment. When I had a terrible glimpse. The dark is rising.

And in the words that follow.

I dreamed that I was walking
And the two of us were talking
Of all life's mysteries
The words that flow between friends
Winding streams without end
I wanted you to see
But it can seem surprising
When you find yourself alone
Now the dark is rising
And a brand new moon is born

I hope that I will walk and talk with Georgina one day. In some shadowy place beyond my imagining, I hope to meet with my first born child. I don't expect to but I hope to.
Those 'words that flow between friends, winding streams without end', they started whilst she was still in my belly and they are still hanging, waiting to be resumed at some unknown point in the future.

Until then.
I walk under the brand new moon.
Without her.

Monday 20 July 2009

Past, future imperfect


Past

I found my 12 week scan overwhelming. I was incredibly nervous, having had all sorts of terrible nightmares, that there would be something wrong with the baby, that there would be no baby. I had a slightly worrying early pregnancy with numerous bleeds and constant nausea.

Despite all this, I had a very strong feeling of certainty about my pregnancy. Like a large rock in a fast flowing river that looks indestructible and has not yet succumbed to the pressure of water around it. Something deep inside me, something holding still and certain at my very core, told me that this pregnancy was going to be just fine. It was meant to be.

Because I had planned for it. I had taken prenatal vitamins, exercised, stopped drinking alcohol, tea, coffee and diet coke, I had studied the list of foods and activities considered too risky for pregnancy, I had checked my immunity status. I felt really healthy, the healthiest I have felt. I am a fairly robust kind of gal anyhow but I felt so strong, so ready.

Because it happened so quickly. As if that meant anything.

Because the previous year had seen a number of deaths in the extended family including my beloved Ouma (my maternal grandmother) and my husband's maternal grandmother. These deaths resulted in both our extended families scattering to the winds, without these central matriarchal figures to pull us all together, we were lost.

Because I found out that I was expecting around Easter, which was early that year. A time of rebirth, new life.

Because I had just got a promotion, my husband had just changed his job, we had settled into our new house.

Because we were ready.

When I found out I was expecting twins at the 12 week scan, I felt even more certain. Despite the fact that twin pregnancies are often more fraught.

I know many sets of twins and twin mamas very well. None of these pregnancies had any major complications. All of the twins were born at term and at good weights. In fact my SIL probably gave birth to some of the biggest twins ever seen in the local hospital. So big that nurses were summoned to witness their enormousness. I probably had some of the smallest twins ever born in the local hospital.
I called my SIL straight away and told her that I was also to be a twin mama. I phoned my friend and left a garbled message on her answering machine telling her that I was also going to be having twins. I told my neighbours and their twin boys, we joked about possible future double dates. I bonded with a work colleague also expecting twins.

My parents were on holiday in Namibia so it was difficult to track them down but I finally did. They were elated and got lots of jokes from the other tourists with them on that trip, one chap was calling my father 'Granddad, Granddad' for the rest of the holiday.

My younger sister and her boyfriend were on holiday in Bratislava. When I finally managed to get through to them on her mobile, she had just been to a stall to buy her first niece or nephew a Christmas angel decoration. She told me that she would go back and buy another one. One of those angels made it on to the Christmas tree. The other is still in its packet, in a box, in the back of my wardrobe.

This is going to sound a little strange but, although there are no twins on my side of the family, my husband's grandmother lost twins to premature birth. Somehow, I thought that these babies were her twins 'coming back' to us.

What a ridiculous list. 'Doubt is not a pleasant condition, but certainty is absurd.' Looking back it was absurd, I was absurd.

It all seemed so very strange to me. Perhaps reading all these 'signs' into things was just my poor old brain's way of trying to assimilate such a shock to my system. The whole pregnancy took on an 'unbelievable' quality following that point.

I was so very, very pleased to see the girls. Shocked and pleased. I went white and had to go and collect myself back in the waiting room. I had a little cluster of people around me, congratulating me on the twins. The other mothers, the administrators. Then I went back in and the sonographer continued with the ultrasound. I remember crying. One baby was very active and seemed to be relaxing on her back, with her feet up in the air. The other was stiller, hunched and looked as though she were praying or contemplating. I think that I asked if I should be concerned about her relative lack of movement but was told not to worry.

Guess which baby I think is which now? But I don't know. It could so easily be the other way round. Perhaps Jessica was the quieter baby that day.

For some reason, this really upsets me.

That I don't know which of the scan pictures is Jessica.

That I don't know which of the scan pictures is Georgina.


I also managed to get the first and last picture of my twins together. I love this picture so much. They look a bit alienesque but you can see them both and the dividing membrane.










It only feels like yesterday. It feels as if I could touch my belly and they would still be there. Sometimes I think I can almost feel kicks. But they aren't there.
I can't believe that my one and only pregnancy started.
I can't believe that my one and only pregnancy ended.
I think I'm still trying to catch up with what happened the day of my 12 week scan, let alone what happened since. Something peculiar seems to have happened to time, since that day. It sped up, it slowed down to a crawl, something has gone wrong with time.

Future imperfect

My manager came round to visit on Friday to discuss going back to work. I am so frightened. I don't think I will be able to manage. I have been sideways shuffled into a project management type role, which is brilliant and they have been very supportive of me. But, but.

But I'm frightened. I don't want to have to manage the database that contains the records of my dead daughter and my living daughter. I used to imagine that my management of those databases would somehow protect against a scenario such as this. Surely life wouldn't be cruel enough to hand my children back to me as a record in a database? I didn't know how cruel life can be and it has been kinder to me than to some.

I don't want to see those birth weights. I don't want to see their names. Alongside all the others. Is anyone ever going to ask me to provide low birth.weight birth numbers? Infant mort.ality numbers? Stil.lbirth rates? NI.CU costing? They are going to have to ask. I am going to have to collate, analyse and talk about these things. These things that make me so very frightened. I don't know how on earth I would cope if I had to go back to work as a midwife or a NICU nurse. But people do. At least they are doing something useful.

I always used to be a great one for contextualising data, for keeping its humanity intact. Remembering that there are people and terrible sadness and fear and joy behind all these numbers. Diagnoses, procedures, births, deaths. Now I know it in the very marrow of my bones.

I want to take all those records and transmute them, all those lost souls, into gold. Make them something dazzling, something perfect, a tribute to all the love that keeps pounding and pounding in the heart of someone, somewhere. Someone who I will never meet but whose sad, sad story I can see. Amongst all that cold data.

I want to take each name and wrap it up, in a soft electronic blanket. To treasure it. To cherish it. Somehow. But it will remain cold, black and white, factual.

Georgina's name will be listed there, amongst them. The code for extreme prematurity will be assigned to her. The code for pulmonary insufficiency. The code for twin pregnancy. All these are listed as factors against her cause of death. I don't want to see it. I can't bear it.

Friday 17 July 2009

I started something I couldn't finish

As Morrissey would say, 'Typical me, typical me . . .'
Except it wasn't really typical. Not of me. But I guess that 'typical me' of the song is tinged with self-loathing. In which case, I hear you Mr. Moz.

I am one of those boring folks who get sorted into the 'completer-finisher' category of all those little psychological tests they give you at work. The donkeys of the human race. We are not particularly creative, inspiring, original or exciting. But, in our defence, the rest of the human race would be pretty screwed without us. We are the plodders who will get the job done, take a project through to the bitter end. When everyone else has given it up as a lost cause, there we'll be. Braying.

I have completed many things that I actually hated doing. Mathematics A-level. Most of my university courses. Dodgy relationships that weren't allowed to die until I had given everything I had to try and keep them stumbling forward. Jobs that I've hated but just couldn't give up on. Check-out operator. Receptionist. Analyst. Driving lessons. Friendships that would have been better off left to fade away but I know that I will grimly maintain them until I'm a doddering little old lady. I don't know why I insist on sticking at things I hate. Who am I trying to impress? Perhaps it is because I had a strong sense of duty drummed into me from an early age.

I don't think I will be a completer finisher in the future. I failed to complete and finish the most important job I ever had. The one really important thing I had to do and I messed it up good. I was so certain that I was going to be able to do it. I'm not a delicate, petite little woman, I thought that this was one occasion my more amazonian stature would stand me in good stead. I could carry two babies, I could nuture two babies. I honestly thought that I could, I felt so strong. On the basis of precisely nothing.



I've been thinking about what Mirne said, to 'write down all your memories, then even if they somehow fade in your memory, you'll have it all written down.' It was good advice. I remember how much I loved reading about Kees in his eulogy, there were so many beautiful details of his life and of his character, remembered by his parents. I only wish that I had been reading about Kees on a different type of blog.

I thought that I would start with that bit that I couldn't finish. Typical me.

Pregnancy.

My husband and I got married in July 2007. We have known one another since we were 18, we met at college. I went to university, he worked crazy hours. That is what our 20s were all about. We had a house (well whatever % we actually own versus the % owned by the bank), jobs (not quite careers but jobs), a garden, cars, plants, goldfish, savings. We thought we were pretty much set. Little did we know.

Once we had decided to ttc, I fell pregnant pretty much immediately. I felt so very lucky, as though it was a sign of good fortune. Humph. I felt quite ill through most of my early pregnancy but I was so very excited. Nausea and anticipation bubbled together in my stomach. Expectant. In every sense. Something that I had been looking forward to so very much, finally becoming flesh. I became a woman possessed, obsessed. I loved this feeling of being doubled, two humans in one. I was convinced that I was carrying a boy and I sang to him and told him stories and chatted to him in the car on the way to work. I dreamt of my blue eyed, brown haired baby boy. My mother's intuition is obviously completely rubbish.

Then I went to my 12 week scan and my world was turned upside down. If I'd only known how many times my world would get turned upside down over the course of 2008, I might not have been so shaken up the first time it happened.

Two babies. Two hearts flickering. Two sets of limbs flailing. Twins.

And because I am feeling nostalgic and I've had a glass of wine. More care free times. Here we are. My dearest is cutting our wedding cake. I'm so happy in this photograph. I'm glad I didn't know what was waiting for me round the corner.
I would get my heart's desire. A child. But it would not be easy. In just over a years time I would have a child. In just over a years time I would lose a child.
My dear, dear daughter would be lost to me. My first child.
My dear, dear daughter would be resting in my arms. My darling girl.
My Ouma used to say to me "be careful of the thing you want, you'll get it."









Wednesday 15 July 2009

Child

Jessica and I went on a visit to a farm park yesterday with our mother and baby group. She loved seeing all the animals, especially the chicks. She seemed quite fascinated by them and wanted to touch them. So I had a little bit of a battle on my hands, trying to bring the chick close enough for her to see it and then whisking it away again when she put her hand out to grab it. I was a bit worried that the little chick might not survive the encounter. Jess is quite strong and has been to known to pull hair, I didn't want to give her the chance to try out her technique on this chick's little downy feathers.

As I sat down to hold the chick up for her, twin girls approached me. Older girls of about five or six I suppose. One of them came and sat right up against me, patted my knee. She wanted to tell me how excited she was to hold the chick. She was such a sweet girl, I hope that none of my upset showed in my face. I showed her the chick that we had and she asked what Jessica's name was.

Up until that point I had been enjoying myself, looking at Jessica's expressions of surprise, interest, disinterest and out and out boredom when confronted by various animals, the trampoline, a bit of cake, a swing, the other children. But something shifted inside me after that conversation with the twins. I started searching for Georgina, wondering what subtle rearrangment of Jessica's features she would have borne. Would she have liked the chick? Would she have made a grab for it too? Or not? Would she also have that strange, low chuckle that Jessica has?

I thought of a poem that I haven't thought about for years. Perhaps it was all the animals that reminded me, that brought back that phrase 'the zoo of the new'. Like many teenage girls of a certain type, I liked Sylvia Plath's poetry when I was younger. I still do but it doesn't 'speak' to me as it used to.

It's a poem called Child. The opening lines are . .

Your clear eye is the one absolutely beautiful thing.
I want to fill it with color and ducks,
The zoo of the new.

This is what I want to do for Jessica. I want to fill her eyes with color and ducks. I don't want this sadness around us. It isn't fair for her. I never, ever want her to see my eyes scanning her face and wonder if I am looking for her sister. She is enough. She is more than enough. She's not half of what I wanted. There is a separateness, a distinctness between my children. I want to be my best for her, my happiest for her. Not this grief-stricken harridan that she sometimes sees.

The closing lines are

Not this troublous
Wringing of hands, this dark
Ceiling without a star.

Those lines reminds me of my Georgina now.
I hope it isn't so. Not without a star. Please.

Sunday 12 July 2009

Over and over and over and over . . . .

'For many babies, the NICU stay is like a roller coaster ride, with ups and downs, triumphs and setbacks. Of course, the parents are also along for the ride.'

A roller coaster is very good short hand for a NICU stay. When you have more than one child it is like trying to ride two, or more, roller coasters simultaneously.
Georgina's ride was shorter, bumpier and came to an abrupt halt.
Jessica's ride felt endless, involved a number of major dips and dizzying climbs but we both managed to step off the roller coaster, basically in one piece.

When Jessica came home from hospital, at the very end of December last year, I naively assumed that I would finally be free of that roller coaster. But seven months on, I am still crashing up and down with boring regularity. The moment I feel that I am making progress, tentatively starting to glue my life back together, I find myself dumped back right at the start. Chewed up and spat out. Do not pass go. Do not collect £200. Back in the old 'stages of grief', my old friends, my good chums, let me introduce you to . . . . . . .denial (or disbelief), anger (or fighting), bargaining, depression and acceptance (the most elusive, like the popular friend you desperately want to come to your party but who rarely deigns to show up). On second thoughts, you probably didn't actually need an introduction to those five. Sadly. I would dearly love a break, from all this endless cycling, round and round. Just as I make a grab for acceptance, wham, bam, back to denial it is.

Thank you for all your kind comments. I really love reading all the memories that you so kindly share of your children. At times I feel that I have almost met them, somehow. Even though I know that is impossible.

I am going to try and finish working on Georgina's memory box. I stalled with it because I am so angry with myself. So angry that I can't remember more about her and the time that I spent with her. My memory seems to have performed some fairly effective erasure of most of the time she was alive. I can remember her birth and her death but nothing in between and not a great deal from the next month. I remember one of the nurses telling me that this was evidence of nature's inherent mercy (hmmmm), that it was a blessing that I couldn't remember those days. But I still wish I could. It was all I had and all that I am ever going to have.

I am so lucky.
I have many photographs of her.
I have a diary that I kept whilst she was alive. I wrote to her as though she was going to survive. I have a diary that my mother wrote to the girls whilst I was pregnant.
I have all the medical facts about her that I asked her doctors for, what happened to her whilst she was in the NICU, her blood type, her time of birth, her weight.
I have the clothes that I was wearing the day she died, when I held her. I also have my husband's clothes. They are a little blood stained and neither of us could bear to wash her blood off. I don't think I could have worn those clothes again anyhow.
I have all the clothes that I bought for her whilst I was pregnant. I couldn't bear to put them away or to give them to her sister (except for one cardigan which, oddly, I know is 'Georgina's cardigan' somehow but I want Jessica to have it)
I have all my maternity clothes.
I have her small toy elephant, her blankets, her identity bracelets, her patient identity sticker, the monitors and probes that they removed from her body, hats that she wore.

The day that Georgina died, I held her for the first time. I tried to write about it at Glow In The Woods " . .the experience was strangely peaceful. All my fears and doubts just disappeared. Temporarily sadly. All I could think about was how very much I loved her, how perfect she was, how full of grace. Not her corporeal form, but her. . . It was as though we both became suffused with light. I wasn't a grief-stricken mother. She wasn't a dying, tiny premature baby. We both became something else entirely.'

It came out sounding a little 'mystical' but in reality it was quite a matter of fact experience. Earthy rather than other-worldly. Total aside but Georgina means of the earth or farmer.

Perhaps every mother experiences something similar when she holds her baby for the first time. I've got nothing to compare it to. I am so very, very, very grateful that I 'met' her, in that instant. It is an experience that I will never forget. Maybe that is why I can't remember more about Georgina, all my other memories are saturated with the final one, those last breaths. So very full of grace. So defiantly alive.

I feel that I should be able to fight off every other emotion with that memory. All the anger, sadness, upset. Begone. But I can't. That makes me angry with myself. As Gal wrote, perhaps it is because I was in an extraordinary state whilst Georgina was alive. Now I am ordinary again. Angry and graceless.

I also have Jessica. I am so incredibly blessed. I feel very uncomfortable writing about her here as, just as she is Georgina's 'shadow baby', I know she is a shadow baby to many others. She is an amazing person in herself and also in her relationship to Georgina. I know that they will always be connected in a way that I can never hope to understand. I don't know how Jessica and the doctors conspired to end up at a living, breathing Jessica but I am so glad that they did. Some days it still feels impossible that she survived. I hope that I didn't do the wrong thing by wishing for my twins to be divided. I feel that it is only through her that I grieve for Georgina fully, that I understand some of what I lost when Georgina died, the relationship we could have had, the relationship that they could have had. But it is also through Jessica that I live, that I let go of her sister, she is my greatest joy.

Sometimes. Just sometimes. I catch myself wondering which one of my daughters had the lucky escape. The one that lived or the one that didn't have to live. Life is a two-edged sword. When Georgina died, I remember sobbing to my husband, "at least her children won't die. She'll never have any. She'll never go through this experience."

Then just when I have all my soothing, comforting memories, words and thoughts around me. I want to smash them all apart. Back at the beginning. Repeat.

Friday 10 July 2009

Still fighting it

When am I going to stop fighting?

When will I just go limp, stop fighting and accept it? She died.
The past is history, the future is mystery, live in the now.
I know, I know.
Acceptance would be the most sensible course of action at this point.
But it is easier said than done.

Why do I still want to get up on the roof and scream at the sky "Then I defy you, stars"?
And I'm sorry Romeo, but this isn't some teenage crush.
I defy you, you hateful stars.
With every ounce of my pathetic, weak, incompetent body.
With every thought of my stupid, incoherent, slow brain.
With every beat of my cracked, old, weary heart.

I defy you. I defy you. I defy you.

I'm still angry. I'm still sad. I'm still as broken as the day I lost her.

What you don't seem to understand, you malicious old stars, is how I love her.

I love her.

I can't stop. I can't accept it. I can't stop fighting.

Because I'm so frightened that, if I stop, she be might be even more completely lost to me than she is already. As if that were even possible.

I'm tired. I want some peace. I want Georgina to have some peace. I want my family to have some peace.To know that just because I stop fighting, stop screaming, doesn't mean that I've stopped loving.

I can't stop. I'm still fighting.

Thursday 9 July 2009

Disbelief

In March of last year, my husband and I decided to try for a baby. So innocent. So optimistic.
Bu August of that year, we had two children.
By September, one surviving child.

Disbelief.
Bewilderment.

Grateful. Devastated.
Demolished. Elated.

I still can't believe that I was once pregnant.
It feels imagined, dreamt, pretended.
Such tiny children. So precious. So beloved. So cherished.
It all happened too quickly.
I wasn't concentrating. I wasn't paying enough attention. I didn't enjoy every single second. I was too busy being frightened.
I didn't have a chance to appreciate what I had. What I have.
My amazing, beautiful children.
Can I start again please? Please?

Tuesday 7 July 2009

Aplysia continued (or my life as a sea slug)

Nearly drowned in my own self pity yesterday. Sorry about that.

It was caused by a sequence of Argh moments that reduced me to sea slug-esque jelly over the weekend. This sea slug thing could just run and run.

At the moment, I love to be distracted. When Jessica is asleep I really need to distract myself or my thoughts will start to drift back down that well-trodden path of . . .why did I ever think I would have healthy children? why was I so complacent? why didn't I inform myself fully? what did I do wrong? was it my fault? did I make the right decisions? . . . and so on.

My strategies to avoid thinking about the events of August last year include . .
not reading anything without an embossed cover and fewer than 300 pages.
not listening to much music as it tends to upset me but I can cope with cheesy pop and disco, the happier the music, the worse my underlying mood is.
fussing over Jessica's health problems, oxygen, weight gain, scans, hospital appointments far, far, far more than I actually need to.
surfing the internet.
playing with my new toy, the Nintendo DS.
watching a lot of television and DVD box sets.
listening to talk radio a lot.
eating.
talking on the phone.

Doing as many of these simultaneously as I can possible manage.

I don't need to tell you. None of these things really work on a more than extremely temporary basis.

I have the radio on nearly all the time, talk radio which mutters on in the background. It is quite nice to have something to listen to whilst J is snoozing or feeding.

So J and I were dozing on the sofa and the subject being discussed on the radio is . . .

end of life care in neonatal units and how should doctors involve parents in making the decision to discontinue life support for their child. Argh. In fact, double argh.
That was not the distraction I was looking for. Not at all.
I couldn't switch the radio off as I was interested in the discussion. For obvious reasons it is a subject very close to my heart.
But it brought back so many doubts.
I don't have very clear memories of the few days that Georgina was alive. I remember asking one of the doctors if there was any chance that she might survive or if I was asking the impossible of her. He told me there was still a chance at that point in time but already I was doubting myself, questioning whether I should be pleading with them to save her life or pleading with them to let her die.
As she became sicker and sicker, I couldn't bear to watch anymore.
My poor tiny baby. She was very ill by the end.
She was ill when she was born and it was a struggle to stabilise her. Then she had a pulmonary haemorrhage. Then her kidneys failed (we initially thought they might have been working but the fluid collecting in her nappy was a leak from her central line). She was not making enough platelets or neutrophils. She had a major brain bleed and the scans were showing severe damage to one hemisphere of her brain. Her problems accumulated until there were no chances left.

Oh Georgina, I'm so, so sorry my darling. I'm so sorry that I didn't protect you. I'm so sorry that I let you down. I'm so sorry that I didn't know that you were sick, that you were struggling. I can't help but feel that I should have known, that I could have helped you. How could I not feel that my own dear daughter, who I loved so very much, who I wanted so very much, was desperately ill inside me? I just don't know. I can never forgive myself.

I completely understand that the decision was not mine to take. The doctors take the decision that they feel is in the best interests of their patient. In this case, Georgina. But there is something in the process of giving consent that implicates you in the decision that is taken.
I was her mother, I was supposed to help her. Instead I agreed to the action that killed her. Academically, I know that she was dead already. She was dying from the moment that she was born. As we all are, it's just that her progress was a little faster.
The machines were keeping her breathing, keeping her heart beating. I can't help but think, she was alive. When I was holding her, she was alive. I could feel her breathing. She was still alive. Then they turned off those machines, with my consent, and she struggled to breath on her own. She couldn't do it and then she died.
I can't believe I let them do it. I simply can't believe that I sat there and let them switch the machines off. Why did I let them start? Why did I let them stop? Why do I still imagine that I had any say at all in these decisions?

Later in the week, the topic for discussion on this radio show is . . . . how to prepare parents for the stresses and strains of looking after twins. Argh.

I spent Friday with my friend and her twins. Not really argh. Just slightly.

On Sunday, I went to my twin niece and nephew's birthday party.

I had been (mis)informed by my husband that this would be a family party. It wasn't. My BIL and his wife are very involved in the local twin club and there were at least five or six sets of twins at the party. Including two sets of twin girls. Argh.

I knew that this kind of situation would be unavoidable as it is going to be pretty difficult to avoid the twins in my life. Unless I want to pack up my life and move it elsewhere. But as I was only expecting the family it knocked me sideways a little.

And a pregnant lady. Argh.

And a tiny baby. Argh.

And a lovely little boy who I haven't seen for over a year and who I used to make up stories for. I don't have the heart for things like that anymore. Argh.

So I slunk around this party wearing sunglasses (even though I was indoors) and generally felt like a bit of a freak. Everyone at the party knew what happened. I was about to be welcomed into the twin club with open arms, I guess. A strange half glimpse into another life.
It is as though Georgina never even existed. That I was never pregnant with twins. It feels a bit like a conspiracy, sometimes I even start to doubt it myself. Did I just make it all up?
But I know it isn't just Georgina. Husbands. Wives. Children. Grandparents. Parents.
The dead disappear. From conversation. They are not mentioned. Not often. They no longer contribute, speak, move. They disappear because it is all that they can do.

But she won't get away from me. I wonder how many other people at that party were carrying little ghosts around with them. Cherished ghosts. Held so tenderly. The ones that got away. But not quite, because we still have a hold on them. And we can't bear to let go.

Spending an afternoon at a birthday party with a beautiful breathing baby who just wants to enjoy the fun and join in with the other children. And a ghost.
I am reduced to a quivering bundle of jelly. Argh.

Monday 6 July 2009

One of those days

I have days when I feel pressure building up inside me, pushing on my internal organs, pressing on the inner surface of my skin.

Rage.
Fury.
Sorrow.
Despair.
Hope.
Self pity.
Guilt.
Envy.
Bitterness.
Self loathing.
Unrequited love.
Clotting in my blood. Crystallising in my liver. Curdling in my stomach.
Sickening. Solidifying. Coalescing. They want out.

There is no release valve. On days like these I am just a container. Trying to keep it all in.

Sunday 5 July 2009

Heard and Unheard

I have finally managed to start reading again. Slowly.

I'm not counting my many renditions of The Gruffalo, The Hungry Caterpillar and That's Not My Monster / Dinosaur / Puppy / Lion / whichever one of the seeming three million variants on this theme that I happen to have in my hand.

Anyhow. I was reading when I was confronted by this epigraph.

Heard melodies are sweet, but those unheard are sweeter.
John Keats

It stopped me in my tracks.

I suppose in any family containing more than one child there is always the temptation to draw comparisons. It certainly happened in my own family. I am the quiet one, the bookworm, the sensitive one. My sister is the loud one, the funny one, the acerbic one.

In the extended family, even more so. There are so many of us that we almost need to be reduced to one or two defining character traits. Without that familial shorthand, we would probably be at risk of our brains exploding as we tried to take in the complexities of about fifty other people.

Perhaps this tendency to label or compare is even more pronounced in the case of twins. Where you have two children of the same age who will, inevitably, progress at different speeds. I even started doing it whilst my girls were still in the womb.
Georgina was the quieter baby, the shy baby, the larger baby, the iller baby.
Jessica was the more active baby, the more outgoing baby, the smaller baby, the healthier baby.

And now sadly, the comparison could not be more stark. A dichotomy.

The quick and the dead.
The live daughter. The dead daughter.
The seen daughter. The unseen daughter.
The heard daughter. The unheard daughter.

I love them equally. But they are different. Growing increasingly different.

Georgina was my first born. I am the first born.
Georgina and I have the same middle name.
Georgina was the baby I saw within minutes of the birth. She was held up for me to see. I didn't see Jessica for at least a couple of hours. I tried to but there were too many people working on her.
Georgina was the baby that I held first.
Georgina was the baby that I spent the first few days with.

By the time I held Jessica, a fortnight after Georgina had died, something within me had broken irreparably. I wasn't the person that I had been. I didn't seem to have that kind of love to give anymore. I wonder if I held something back. All I could think of was another funeral, another tiny white box, another bag of ashes.

Will I always be searching for Georgina in Jessica? The very last place that I want to look. I find myself doing it. Even when I know that Georgina is not there. Looking for an echo of her in the turn of her sister's head. In her sister's eyes. In her sister's smile. The curve of her sister's cheek. The smell of her sister's fuzzy head. Georgina?

But I don't know. Far be it from me to contradict Mr Keats but, on reflection, I'm not entirely convinced about this unheard melodies being sweeter stuff.

They are simply unheard.
Unplayed.
Unlistened to.
Imagined.

Nothing can be sweeter than the music that we hear. Now.
Or perhaps my imagination is just a particularly crummy one.

I think I can still hear Georgina. She is still with me. On the outskirts but still with me.
Not in my imagination. Not entirely.
In the blood that swooshes in my own ears.
In the lines on my face.
In my eyes.
I think about her so much that she must surely have left some indelible trace on me, a well worn groove in my brain.

I will never forget her.
I think about her every single day.
I cry for her every single day.
I still hear you sweetheart. My girl.
I'm listening. I'm always listening.

Friday 3 July 2009

Aplysia

In another life, I was a student. Not a good one but I can remember the odd lecture. Here I feel I should add that if you want to know any accurate facts about the topics mentioned here, I would look elsewhere. My memory is not what it once was.

Today I remembered a poor little creature called Aplysia. I think he is a type of sea slug if my memory serves me well. Hmmm . . I've just googled him and apparently my friend belongs to the genus of sea hares. Sea hares? I have to admit that I didn't know that there were such creatures.

When something nasty, like an electric shock, happens to Aplysia he withdraws his gills by reflex. Sadly for him, he was used in a frequently cited experiment to illustrate classical conditioning, where one stimulus is substituted for another. By pairing something nasty with a light touch to Aplysia's siphon you can, eventually, work the poor little guy into such a state that a light touch to the siphon will cause the gill withdrawal reflex. No nasty necessary, just the light touch to the siphon.

I remember feeling a bit sorry for him at the time. A nervous wreck of an animal, reduced to quivering jelly everytime something harmless brushes his siphon.

I feel even more sorry for the innocent little sea hare now.
I feel as though I have been used in a classical conditioning experiment myself. Seemingly innocent stimuli now trigger whatever the human equivalent of Aplysia's gill withdrawal reflex might be.

Anne Geddes photographs - argh, withdraw, withdraw

Pictures of smiling healthy babies on nappy packets, infant formula tins, baby wipes - argh, withdraw, withdraw

Pregnant women (particularly heavily pregnant women) - argh, withdraw, withdraw

Double buggies, which must first be approached and checked due to my peculiar inability not to do so, but when found to contain two children - argh, withdraw, withdraw

Discussions of how painful labour is, how many stretchmarks you have, how you need to get rid of that last bit of pesky baby weight - argh, withdraw, withdraw

Babycentre poll questions 'if you could choose to have twins, would you?' answer yes or no - argh, withdraw, withdraw

How many children do you have then? - argh, withdraw, withdraw

Is she your eldest? - argh, withdraw, withdraw

Wouldn't you love to have twins next time? (yup, someone has actually said this to me in all innocence) - argh, withdraw, withdraw

How old is she? - argh, withdraw, withdraw

How much did she weigh? - argh, withdraw, withdraw

Newspaper stories about 'miracle babies' - argh, withdraw, withdraw

Twins, especially twin girls - argh, withdraw, withdraw

So I can only conclude that this experience has indeed turned me into a sea slug. Or a sea hare. Whatever the differentiating factor might be. Slug? Hare? Whatever. A quivering mass of jelly which can be scared into pulling its gills in by a touch to the siphon.

None of these things are done to get at me, to hurt me, put there on purpose to rub my nose in what I can never have. Both my daughters. The experience of giving birth at term. Bonding with my baby. That first skin to skin contact. Nursing my baby when my milk came in.

These things, in and of themselves, are not painful. They are not the electric shock. The electric shock came sometime in August last year. These are just the reminders, the light touches to the siphon. The things that were formerly either a source of pleasure or indifference. Now paired up with the most painful experience that I have ever been through.

All of these things are just other people, living their lives. I probably cause someone else to 'withdraw their gills' as I waltz through the world with Jessica. I look as though I haven't a care in the world.

I just wish I hadn't been through that conditioning process. Anything associated with babies, pregnancy or birth has a slightly sickening, jarring association for me now.
I know what you're thinking. You don't need to be coy with me. Yes. Even that.
Even Jessica's own nappies, toys, little outfits. Not Jessica herself. I don't think so anyhow. I hope not. But when I look at her sleeping in her cot, I can't help but think of the other cot. Dismantled. In the attic.

And I used to take so much pleasure in babies, those chubby little limbs, those gummy smiles, in imagining my own babies, buying little gifts for other people's babies, celebrating pregnancies or new babies (it was a bit of a joke in the office where I work how excited I used to get whenever there was a pregnancy announcement).
I can never have that back.