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.