Sticking like Glue

The other day I wrote about my sleeping arrangements and my fear of being far from my daughter at night. 

I like to think I'm going to be a cool mum, but I'm having to face up to facts.

I am terrified of being apart from her.

It's not a desperation to apart exactly, more like a terror that something awful will happen and a completely irrational feeling of betrayal. She would be fine, after all, I worked 3 days a week between when she was 8 months and about 21 months. She is now more reluctant to part but is such a sociable thing. It's me.

I thought I had put Neonatal and everything that followed behind me. I received excellent counselling until very recently, took a course of Sertaline (a SSRI anti-depressant also used for anxiety and in my case PTSD) and then unfortunately this summer happened and we got a feeding tube, starting diagnosis and reunited with some of the PICU consultants although thankfully avoided their unit by the skin of our teeth. Right now, two years ago, Wriggles was in NICU and this anniversary period is a funny old time. Full of flashbacks and bittersweet pride. Sometimes I think I over exaggerate the past, and then find a scrap of something from the time and it hits me again like a ton of bricks. She was that small. She was that sick.This lunchtime I was looking at her first nappy size given to me by special care when we left. I was shocked how small it was, fitting in the palm of my hand. I remember her looking dwarfed in it. Curled up in a special nest in an incubator, small, so small, with a huge chunk of machinery attached breathing for her. Then a little white hat keeping the CPAP apparatus on so she could breathe with some help. The feeding tube in for weeks and weeks because she was gestationally too young to have developed the suck/swallow reflex. The weeks and weeks of one cuddle a day, at 3pm sometimes for less than fifteen minutes. Oh god.

When I went back to work, I made myself because as a single parent I felt I had a duty to provide as best as I could and also not to conform to stereotypes. I did enjoy aspects of my job, but after giving birth so much felt like clock watching. There were days I loved and days I hated. The worst bit every morning was saying goodbye at the childminder's. I never dawdled leaving the office, but pelted back as soon as I could. Since being made redundant, Wriggles' needs are arguably a little more complex. Aside from the feeding tube there is a greater understanding of why she gets so poorly, which in itself comes with more caution to be exercised. 

Since she was rushed to hospital late July, we have not been separated for longer than half an hour on a sparse handful of occasions. 

This weekend, I was supposed to be travelling for a weekend away probably involving some babysitting.

This evening I broke down and admitted how scared I am of loosing some control and not being within running distance of my daughter. I have not had a panic attack for a long time, but I sat here, dizzy, tears streaming, my heart racing and my throat tight and painful. It's too soon. 

My worry is, when won't be too soon? She is now 2 and it's not like we're going to be able to forget prematurity or hospital visits for a long time, such are her medical conditions and health. I don't want to become a paranoid overbearing parent, embarrassingly clinging to her trouser leg in the playground. I want her to keep her independent streak that makes her so her and that I cherish for her beautiful personality of her own shining through. I'm going to have to let go in small amounts at some time in the not too distant future, for nursery, then school and my eventual return to work. I'm going to have to trust other people to do their best by her, to learn her cues, to know her danger signs, her quirks, her needs. But not yet, not now. She is still my baby and I am still cocooned in the after-effects of scare after scare. I need to build myself up gradually and look back out into the light. 

I just hope these needs of mine don't step on her needs of finding out about the world without me.

Confession

I have a bit of a confession. I think it's a bit shameful; though nothing in the slightest bit gossipy or interesting.

I have a perfectly adequate bedroom and a perfectly adequate bed. It is right next door to Wriggles' room and there is but a wall separating us. Theoretically.

Yet, since about the end of July, I have been choosing to sleep on an airbed on the floor of Wriggles nursery room. 

I moved in as a temporary measure before we ended up in hospital for the millionth time when she was poorly, as she needed monitoring very closely and was awake most of the night crying and coughing. Then, we we abruptly came out of hospital over a fortnight later complete with feeding tube, pump and equipment, it made sense to sleep in with her in case she gagged and was sick mid-night, or the machine started beeping or the feed ended, saving fumbling in the dark, walking into doors or missing any of these cues because I couldn't hear.

I think it's come to the point now, nearly a month after her PEG tube was placed that it is now more for my benefit and comfort than hers. If I was worried about noise, I have a baby monitor, and really my flat is not huge. I know she would be be quite fine if I wasn't there: it's me that might be a wreck. It sends me into a panic, the thought of being apart. Maybe that isn't entirely true: what I am scared of it that something will go wrong and I won't hear. When I am in touching distance of her, there is not a lot I miss. The slightest whimper and I can be there. If she rolls over and gets tangled in her tubing, I can drag myself about a metre to the left and untangle her. Simples.

But what if I didn't hear next door? What if she started labouring breathing? What if she was sick? What if she paused in breathing? What if, what if....so many what ifs. So many what ifs that are unlikely but still there. Because after the last two months, if it isn't a dead cert, then frankly I'm not interested. I don't care for your probablys, your averages, your statistics, your maybes. I want definites and I want to know that I will be in the right place and the right time. I am sick of taking chances and of looking at even minuscule risks. I am done with what feels like playing games with my little girl' health. 

I'm not sure it's healthy, but I'm not sure I can move back yet either.

Dear NICU

Dear NICU,

I am angry. So angry. I know I shouldn't be but there are so many things I want to say to you. Maybe it's not healthy nearly 2 years on but I need to get this off my chest.

You denied me my role of motherhood. You took away my basic rights as a parent. You can SAY I'm still the mum, but how was I really being a mum just sitting? Sitting and staring. Watching and waiting. That's not parenting.

Do you know how demeaning it is to ask for permission to touch my baby? Not even hold, but touch? And when told, albeit gently, no not now, no not today, how you snapped my fragile heart and stamped over it before brushing it aside for dead.

How patronising and sad it is to have cuddles put on a rota, as if it was another chore to tick off. 15 minutes a day; 3pm after cares.

How I felt as small as a gnat, no smaller, as worthless as a flea because I wasn't breastfeeding. I couldn't even do that and you didn't care. You didn't even say, don't worry because it wasn't important as long as my child grew.

You smashed every one of my dreams and preconceptions of my first child, my baby I will never ever recover or now live. My innocence was lost within hours. It doesn't matter if I go on to have another baby; I will never get those hours back with her.

You were rubbish at sharing. All those weeks and I could only visit. Every night I had to leave. Every night I had to leave my baby with someone else. Someone very kind and very skilled but a stranger. Every night I had to accept that someone else would comfort my baby because I couldn't be there to do it, and might get to hold her precious hands while I wasn't allowed.

You had the most important job in the world looking after tiny vulnerable beings that were each the centre of someone's universe and yet you had no compassion. Day in day out some babies would get sick. Worse, some might leave this earth. Why didn't you do something? Something more?

You weren't me. You might have cared for my baby but you will never love her and you took her from me when she needed love the most.

Kind regards,

but maybe not that kind,

Mouse

ps. By the way, thanks for y'know, saving my baby's life and looking after her. Thanks for giving her the chance to live so we could both be happy today. More than happy. Um. Maybe you could just ignore all of the above?

*screws letter up and throws it in the bin*

Sigh.