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.

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.

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?

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.

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.

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.

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.