I must admit, I thought it would stop. I thought a point would come where the anxiety would cease and the old person would take over again. The person I was who kissed better and brushed off sickness and hurts and assumed that they'd just be better next day.
Two an a half years on, I'm now acutely aware that I'm operating a shut the door policy on many aspects of grief. Of all of them, the legacy of 11 days in scbu is probably the greatest of those. I had no idea of the impact of those days when I was there, I didn't foresee how deeply they would change me.
By and large, even if we mentally cross ourselves when we go past the special care baby unit sign in hospital, special care is seen as a safe place, a place where babies are too sick and too small but get taken care of, eventually graduating to the leavers board and a carseat picture – and home. We don't really think of it as a place that babies go into and do not come out. We don't think of it as a place where all the movement and urgency is carrying them in, fleeing from one place to another with a desperate baby in arms. With stillness at the other door. And I'm just beginning to see how deeply, deeply frightening a place it is and how much I haven't written about it, or spoken of it, or acknowledged it.
Our unit was beautifully kind, loving, thoughtful, caring. If I had to do it again, I'd go back there and if I have to be grateful for it, I can be grateful that Freddie lived out his life there. But even with all this time since, I cannot make my mind rest on those days, think them through, read the notes and put moments in order or join the dots. I can remember flickers of things, a nurse with a kind word, another with a bustling, annoying but caring manner, a note tucked in the cot from a midwife, a baby crashing across the room, another tucked in a carseat doing a stress test, the nursery, moments of normality (if normality is talking to a mother about how your baby will probably die) in the kitchen while making tea and cleaning pumping parts. I can remember a room change and a nurse guiding me to a new bedside, a cleaner rattling about the room complaining she was getting a cold and my head screaming at her to get out then; photos, refusing a bounty bag, the nurses station laughter behind me as I took video footage of a waking baby I now can't bear to watch.
Those are the good bits.
And I can remember knowing I should say no to a drug and not doing, calpol for a hot baby, the leap of my heart when we had our first cuddle, that I held him up against my shoulder, my left shoulder, where I used to hold babies. Now I use my right. I remember washing his mouth with a sponge and thinking how pointless it felt to do things he'd never appreciate, refusing to learn to feed him by tube because I knew he would never come home, nappies, swelling, charts I couldn't read, words that floated over and around my bewildered, normally astute head and made no sense. Drug names. Pneumonia. MRI. Scan. EEG. Seeing swelling. Not able to understand why he was safer not having milk. Pumping milk, bottled with a purple written label that he never drank. I remember suction noises, sitting night after night while the hospital slept in the company of his nurse and it filtering in slowly, so slowly, that the smaller babies were more well than Freddie and that my baby had a nurse all to himself. I remember a doctor who scanned his brain and saw no damage, a brain scan that saw normal patterns, a baby who just wouldn't wake and doctors who said 'he'll do okay', 'some damage' followed by 'severe damage' followed by 'difficult to predict' followed by 'probably going home with a feeding tube'. And we're caught out by death. But I wasn't. And if I knew better that time, might I not again?
I remember being carried, half carried, down a corridor by Max to be put to bed by midwives with sleeping tablets, huddling on a bed pleading with a doctor who shared my name not to make him stay alive when he didn't want to, not to put him back to a pointless sleep with more drugs he couldn't fight off. I remember a do not resuscitate meeting, witnessed, where I pleaded my case for my son not living and was quietly assessed, reminded if my motives were not considered acceptable that he might be made a ward of court. Gently, so gently, but firmly said. I remember the sound as he forgot how to suck, the sound of a suction machine, the oxygen dial creeping slowly up, the boy with the chubby face and covered limbs slowly dwindling to thin and frail. Clothes off, clothes on, did the colder room kill him? Did he know me, the day he choked and the lights went on and he opened his eyes and looked on in shock but still didn't cry? Was he frightened? Why did I go home the night he was awake and looking at me? Why didn't I see it was the beginning of the end, not the end of the beginning? When he was awake, what was he trying to say? What did I miss?
And did, dear god, it hurt to die?
Shutting the door is best. There is no way to describe that 11 days, no way at all. Not even the pictures make sense. The handful of photos, still not sorted or arranged neatly in order. I'm saving that for a time when the pain is bearable. Some of the pictures are of a tiny newborn, some seem to be of a chubby, fat, bigger boy. Some are of a wizened little man. I hardly know him from the photos and I can't remember what he looked like. Just snippets. Feelings. I can't remember the order things happened in, or who visited, or when or how or why. When I went home, when I came back. Which days were good or bad. It was just a long, long lonely 11 days. A roller coaster where things changed from muted joy to worrying blood test, to optimistic movement, to catastrophe so fast that I will never trust a trend again. It's simply not possible to ride a curve any more. I know curves can mean nothing. I know you can go out for a walk in a park, leaving a baby in a cot that seems poorly but stable and come back an hour later to find him dying.
How do you recover from that?
My body does a fast track from okay to panic now; a shortcut has been forged, a short circuit that means I can hold on as tight as I can for as long as I can but when the current finally faults, I'm just back in a room I don't understand watching the world crumble in seconds.
It changed me profoundly. Made me fatalistic. Made me stoical in a way I didn't used to be. Made me silent in stress. Made me shut down if I think I don't want to hear. Changed me from wanting to know to not wanting to know.
It changed me because while I now believe my instincts, I don't trust my judgement. Babies lie. Health lies. Machines and medics don't know everything and can't always save us. Something can come and take my children any time it wants and I can't stop it.
I lost my ability to believe in myself and make a call. I've even lost the ability to decide what dose of paracetamol to give my children or myself. And one thing is for sure, I lost the ability to work it through and heal myself by talking, whining, being self centred and emotional.
Shut the door. Nothing frightens me as much as knowing how much trauma there is hidden inside me from those 11 days. I have no idea how to sort it out. I don't even want to. I reckon I can get through to dying without taking it out and looking at it.
This week, this last two weeks, Bene has been ill. He had a cough and a cold first and once he started to get better, he got a temperature. On our third visit to the doctor, because no baby I've been in charge of has got better on their own from a temperature that roasts them but leaves their hands and feet freezing, he was given antibiotics for a chest infection. Of course. Because he would get a chest infection, the very thing that inexplicably carried his brother off when the antibiotics just didn't work, didn't save him.
Yesterday he woke up puffy and blotchy and covered in a rash. He is, of course, the first of my children to be allergic to penicillin. Sigh. We went back to the walk in centre, an institution I've spent way to much time in recently, kicked off by Amelie having the closest thing to an actual asthma attack she's ever had and having to be given a nebuliser. Back again, with a sick but okay baby in my arms, having been summoned in by phone with 'don't panic but come now'.
I am at least learning my limits. I got to the desk, gave his name and whispered 'I am very, very close to panicking. Please don't make me sit out here with all these people'. I've learned, this last two years, that people who work in medical establishments can normally tell the difference between a person being a pain and a person genuinely about to lose it and I was through the back, in a chair, with a nurse I made cry inside of thirty seconds, not entirely reassured by hearing Bene's name was marked 'alert' anyway.
The day before I told Max, wrote down even, that something about Bene felt a bit wrong, something unfamiliar, that I couldn't recognise, just not right. He set off the breathing alarm he sleeps on twice that evening but neither of us could see why, just that he waited too long before breathing in. Something didn't feel right, even though nothing could be seen. It's mildly comforting to find I still have good instincts, even though I chose to stay home and not act on them. Turned out okay this time.
My heart can't tell the difference between this picture above and this picture below.
And really, who can blame it?