Sorry, Wriggles

Some days I long to see you run off as if in flight, with the crowds of other children.

Some days I long to see you slurp up a drink noisily and blow bubbles through straws.

Some days I long to just go out for lunch with you and order something off the menu for you to eat: with pleasure. No syringes.

Some days I long to hear your voice join the little words you are learning.

Most days I feel at peace with how things are and focused on your abilities.

All days I feel so heartbreakingly proud of you (except maybe, when you are badgering me for Maisy Mouse DVD again).

And some days I feel bone-crushing guilt and sadness that I couldn't "fix" things for you.

That I can't wave a magic wand.

I feel angry we have to rely on so many people and are only adding to that team, to help you achieve what comes so naturally to other people.

When you cry during physio stretches, I am crying with you. I've just learnt to have invisible tears.

If I had a magic answer, I promise you I would have used it.

You are so good; so happy really. So full of beans, so scornful of fear.

So why do I feel so sad and guilty that I have somewhere failed you? 

How is it possible to feel so grateful, thankful and elated and simultaneously so muddled, confused and aching for this life you never envisaged to go back to being hidden?

Tiny no more

Recently I have been trying to do some sorting out. As happens when you have a small child, odd tiny socks and vests you never bought breed and end up EVERYWHERE. Today I found a wee bootie wedged behind the clothes horse and was momentarily caught stock still at it's size. It was so small. Yet it was easily that for a 3 month old child; needless to say it fitted mine up until around her first birthday. When I find these small items of clothing aimed at the first few months of life, I then have to further pinch myself to remember my baby was even smaller. Seriously small. At 1090g (just under 2lb 6oz), little bigger than my hands. Her eyes barely open, unable to breathe for herself and so frail. Her first picture a few hours after birth is a little shocking. I treasure it, but it is not a cute baby picture by any means. I love it because she is my baby but I can't quite imagine it on a board with other baby pictures of squashy newborns or even pictures later down the line of NICU.

When I find tiny things, I always have a pull to go back to our NICU memory box and find her first nappy, first dummy....so small, even for doll's clothing. I find it staggering to look at them and think that baby, my baby survived and thrived. That babies, some half her weight can too. I can't explain the pull to keep looking at these things, keep reminding myself. In many ways it is like poking at an open wound. God, it hurts when I think of the pain and suffering she has been through. The mental pain and suffering I and my family have been through. The scars we are left with.

I find myself afraid of forgetting, alongside paradoxically being desperate to move on. It has defined things for so long and is really my only experience of motherhood. For so long I wished we could have been one of the average statistics, the "normal", the tears-free, the one where you knew your baby would be there the next morning. Now two years down the line, we are in a little limbo. In part, it is oceans away. In part it is still with us every day in form of some problems or delays or memories. In a strange and not-entirely welcome way it has become my normal, which is what I think I am afraid of letting go of. Instead of doing all the things I expected to do as a mother, I did lots of hospital based things and seeked out people in similar situations for vital support. Now we are in a position to mix and match effectively, I find I often flounder. It feels disloyal, like we are turning our back on all we went through that made sure I had the daughter I have here today. Which is so silly; we all know children grow up, lives move on and people grow with change. Being able to do some "normal" things is homage to the doctors and nurses who fought alongside my special girl.

Sometimes prematurity, illness or additonal needs feels like a secret world, one you can only imagine until you suddenly have the key and being in that walled place is a thousand times more overwhelming and vivid. In some ways, life will never be the same again. "Prematurity is an experience no one really thinks about when they embark upon the adventure of parenthood. And it’s not one anyone wants. But once fate flings such a twist our way, we find ourselves part of the secret society we never asked to pledge." Finding tiny keepsakes feels like a mascot of this new club, a lifelong allegiance with a terrifying induction. It is less about clothes, or first dummies, just that these firsts are so different to the firsts we might have anticipated. But they are still firsts, to be cherished alongside the grievances. But it isn't easy. For the first year, I so wanted to forget. Now I can't bear the thought of forgetting.

Sunday Lunch

Written retrospectively during our recent hospital stay at the beginning of August 2012.

5th August (day 6 of being in hospital)

15:00, 5 litres of oxygen

I am tired now. Exhausted. Strung out. I can feel my bones heavy with the need to curl up but my eyes will not close and my brain will not cease. After the past week, adrenaline is still coursing through my body making me on hyper alert about everything. It is in this acute state that there are no inbetweens, only huge, looming and dramatic emotions. How did I do this in NICU for two months? How do too many families do this for longer?

Whilst Wriggles finally succumbed to an afternoon nap, I walked to the adjoining wing of the hospital. Primarily to scour the hospital shop for a belated lunch and stretch my legs but also as it holds a pull as being the wing of the NICU where Wriggles "grew up". So many intense moments, thoughts and experiences happened there, so many memories that linger like ghosts in the reception and all-night Costa Coffee franchise. Memories of daytimes buzzing with people and late nights eerie with silence, only the receptionist lonely at her information desk, the sulky coffee baristas staring into space, the odd lost drunk from A&E and smatterings of visitors like me, drifting aimlessly but with a sad purpose. People too late to have been on a happy visit.

This lunchtime, families packed the forecourt, a couple waited with their tiny new baby in a car seat, with a thin tube protruding from it probably fresh from being discharged from NICU upstairs. Finally taking their baby home at last albeit with accessories they probably never contemplated. It takes me back like yesterday. In a flash, I am there. 15th November 2010 with my baby in a car seat and oxygen tank wired up. Adele, neonatal matron and community nurse bending over to say goodbye; after all she knows my baby as well as I. Probably better. I wear a brown dress, green scarf and a cardigan my mother wore as a young woman. I have worn these this past weekend whilst rooming-in, the first nights I have ever spent with my baby. She snuffled noisily all night. I drew her acrylic cot so close to the fold-down bed they touched. I wanted, no, needed, her as close as physically possible. I ached for her to be in my bed with me, close to my skin, but lacked the confidence with her fragility and wires to whip her out close to me. I loved night feeds. Another precious moment with my baby girl. 4 hourly feeds round the clock. Tick tock, tick tock. The nurses would buzz in and out. "Getting on alright?" Better than alright, I'm finally where I belong: with my child.

Today though, is t-shirt weather. I don't feel just two years old; I feel at least 20. No one expects NICU to be an easy ride and indeed compared to many, ours was a relative breeze. But no one predicted the tumultuous years after leaving, the short bursts of horror at dreadful new admissions, the ceaseless worry about what was next: there was always a next.

At the end of the coffee queue, a father has a curly haired toddler on his hip, the child sleepily sprawled on his shoulder nestling in. A lump comes into my throat and tears prick my eyes. I long for my curly haired toddler, who is in the next wing sound asleep and still covered in wires. I had her on my shoulder but ten minutes ago curling into me, but that isn't what the pangs are suddenly for. It is for a life I imagined, seemingly snatched away. For a life free of medical intervention, a childhood of innocence. Of course, this child may have also had a rough ride, I know nothing of their lives or history, but in this split second their cherubic appearance embodies everything my little girl has missed. She bypassed naivety and has already experienced too much, too young. Maybe after this, the admissions will lessen or better still cease. But these years will never be repeated. They are lost to tears, nightmares and terror. Of course we have had blissful, happy moments and memories but they are not the ones that stay so bright. There is no point dwelling or mourning what could have been: we are lucky. I just wish we were luckier.

Back in our cubicle, Wriggles sleeps with her toy hedgehog by her side. Her fair hair fans out on the crisp white pillow, her NG tube sinking into the cotton creases. Sats: 95% on 5 litres of oxygen. Heartrate: 106. She is peaceful for now. My pyjamas hang off the buggy we innocently arrived at the doctor's in. In the little en-suite bathroom, newly washed socks swirled around in the sink with shampoo drip off the hand rails. On my pull-down bed sits a pile of confiscated Mega-Bloks from the playroom. Outside the window is the distant hum of traffic from the A167. People walking by with umbrellas. 

Just another Sunday afternoon.

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.

The Best Worst Place

Recently, I met a fellow neonatal mum face to face. We were introduced by a good mutual friend of ours and had both had daughters on the Tiny Lives unit at the RVI. Our daughters had missed each other by a couple of weeks. Her gorgeous 30-weeker, now 16 months old, was born due to placental abruption. Immediately, it was like we were part of a secret club with a code language. In minutes we swapped procedures, compared stories, established mutual acquaintances on the ward and compared favourite doctors and nurses. 

"It was such a wonderful place."

"So lovely; just incredible."

Our friend, with her term baby, looked at us as if we were mad.

We paused and looked at each other as if we were mad. And quickly looked away, a slight welling of the eye and a lump in the throat.

"A horrible place."

"The worst place to be."

The thing is, both things are true. A good NICU is the best worst place to be. If you're going to be separated from your newborn, you damn well want them to be in the best equipped place with the most high-tech machines and knowledgeable staff yet also with compassion. But of course, even the best NICU, the one with the friendliest nurses and the most intelligent doctors and the newest and sparkliest and beepiest machine is never going to be enough. 

Because it's not with you. 

You can visit, yes. But that is the hitch: you have to leave. Night after night, you have to walk away. Bye bye, baby. Does your child, wired up, know you are leaving? Know the difference between night or day? Know inherently that you should be there, forever and always? That is all debatable. But to you it goes against the very grain of parenthood. It is the strangest thing: you know it is the best place for them. But you also know, that it will always fall short and cheat you both of the most loving and most caring place: being there with you.

Fright

Yesterday at work, I had one of the more enjoyable tasks I do: filming rehearsals with the dance company for the new piece which is being choreographed. The new production is a telling of favourite fairytale Rapunzel, originally a European folk tale that was collected and retold in the Brothers Grimm book in 1812. There are several variants of the story which pre-date this, including Petrosinella in 1634 and Persinette in 1698 which all have in common the story of a witch stealing or bargaining a dearly wanted child away from her parents and locking her in a tower until a prince finds her and begins to visit her by climbing into her tower from her long hair. 

As a child reading the story, the bit we all focused on was Rapunzel being in the tower and sneaking her prince in while she falls in love before being banished by the evil witch: the stuff of drama and romance. As a more mature understanding, it is quite a complex story and there are more illicit and darker undertones. In many variations of Rapunzel, she is banished because she has become pregnant herself, which is how the witch or Dame Gothel figure finds out about the nimble-footed prince. It is as much about desire, sexuality and fertility as it is about princes and princesses and good conquering evil. But before this section of the tale, is the beginning whereby Rapunzel leaves her parents, which before I had never given much of a second thought to. Of course, it is just a fairy tale and has no basis in reality, but it is powerful the notion of parents giving up their child in any form, fictitious or otherwise. As I watched, I thought and reflected as a mother on how it might be to have my only child snatched by a sorceress (as you do). A lump rose in my throat-as a parent who has been through NICU I know all too well about separation and the fear that you may never get your happy ending. The idea that I might have lost the sunshine in my life made my pulse race and my thoughts strayed to real life parents who for many assorted reasons have either been separated from or lost their children.

The studio was warm and the dance was entrancing and emotive, and I happily sat with the camcorder in the corner when my manager walked in. She came over and said in a low voice.

"Your childminder has just rang; she's concerned about Wriggles."

My childminder never rings.

She has only rung about once before in over a year she has looked after Wriggles. She has a remarkably high threshold for sick or cross babies and is full of common sense and does not take things like this lightly. She will exhaust every avenue before ringing.

My little world suddenly slowed down and came to an abrupt stop.

I ran up to the office, stubbing my toe on the way out. Pelted up the stairs and shaking, scrabbled to find the phone and her telephone number. My hands fluttered and my heart was in my mouth as it rang.
Wriggles had had one her "moments" again. No one is quite sure what causes them, but every now and then she will get horrendous and prolonged coughing fits out of nowhere and become very breathless and chesty sounding. You can audibly hear copious amounts of secretions rattling around (mostly transmitted upper respiratory although they can also be lower respiratory too, particularly in her right lung which is the most scarred) and her breathing becomes very rapid with recession. Sometimes if she makes herself sick, they pass quicker but this is by no means a given, and it is usual for them to last several hours at a time. Although they have some similarities with asthma attacks, doctors are confident that it is not asthma. To me they seem to be connected to sleeping or feeding and the doctors have said it may be a side effect of reflux and chronic lung disease that hopefully she will grow out of in time. It could also be as her airways are still very narrow as a result of prematurity that any catarrh can block them very easily.


I left as quickly as I could, losing one sock in the process (later located in handbag: no idea how). Wriggles was calming when I got to her but still very chesty and breathing fast. She had not been able to take any fluids to help because of the coughing and chestiness and as I was nearer to the doctors than hospital I decided to cross my fingers and take her there and hope it was the right decision. Luckily it was, and we got to see a doctor who has seen these episodes before with Wriggles. It was beginning to pass after about two hours by the time we saw him: typical! He was very understanding though and found an ear infection and catarrh as well as advising use of inhalers and antibiotics for the next few days. Panic over... We returned home via the supermarket with some ice cream as a treat.

Wriggles went off to bed with some persuasion and I let out a long breath. Compared to some of Wriggles' escapades it was so minor. But there is nothing like reawakening fear to put you on high alert and dredge up memories and anxiety. Having seen some pretty horrible sights of Wriggles being on the edge that are burnt into my memory, every tiny and slightest threat brings them back to the forefront. Do I think that Wriggles having an increased work of breathing for a few hours will send us to Intensive Care? No, I do not. I know what merits an ambulance and an emergency and what merits scanning the shelves at Boots. I don't automatically assume that every single infection is life threatening. But living with memories is a curse as well as a blessing. Because for a split second, fear overpowers love and knowledge and you realise that you cannot ultimately protect your child from everything, try as you might. And that, is scary.

Permission

Dear You,

I think we should have some serious words.

I know you've been having a hard time recently. Or rather, Brain has been giving you a hard time. If it is any consolation, it isn't your fault about Brain. It's nothing you've done or not done that makes her a bit unstable; it's nothing your parents did or something that happened, it's just that that is how you humans are made. Sorry. It's an evolutionary thing. Those cave-ancestors have a lot to answer for, they set a pattern of primitive reactions designed to protect and save you. Only things have become far less clear cut since then. That's where I came in, to reason and rationalise, to plan and remember. Brain got a bit boisterous and took over a bit. The default alarm went off. But I'm back now and I'm just going to do some spring cleaning if you don't mind.

*does some dusting*

Letting Go

As silly as it may sound, I am afraid of letting go of the past. Despite the pain and disruption that neonatal and PICU have caused, I am scared of forgetting them and moving on. They are such an important part of our lives and whilst caused unimaginiable hurt, they also made me intensely grateful and changed the way I look at things now. They are so integral to Wriggles' journey and health, how can I just write the experiences off? How can I move on when they can loom so large?

Because things are different now.

Because this:

Is not this:

Cuckoo?

Although it is more of an "acceptable" subject these days, mental health still holds something of a taboo. It is not one to be discussed lightly and can be a minefield of political correctness, ignorance and compassion. We're all guilty of claiming to be "depressed" when the washing basket is too full, "going mad" when it's been a bad week or five or "traumatised" over losing something but none of these really go anywhere near acknowledging how it really feels if you are genuinely battling with a mental illness. Mental illness sounds terrifyingly serious. It describes a huge umbrella of things in varying severity, many of which can be recovered from and escaped. I don't think anyone ever expects to become a sufferer or a loved one to succumb. Until you are gripped by one, it is very hard to fully understand being controlled by thoughts and emotions, many devoid of reason or rationality.

There can also be such a fine line.

When do the baby blues turn into postnatal depression? When does grief turn into depression? When does shock turn into post-traumatic stress? When does worry turn into full-blown anxiety?

I cannot speak for everyone, only from my personal experience. At present, I am currently signed off work for a small period following over a year of dealing with post traumatic stress, depression and anxiety. In the main, I have largely been able to control these with help from sertaline (a selected serotonin uptake inhibitor, or SSRI drug) and a course of counselling. There have been low points certainly but so far I have been able to juggle things even if that means really struggling. Lately though, the struggle has been getting harder. Motivation and concentration have gone out the window, and I have been exhausted. My mind has spiralled into a whirlwind of pure emotion, little based on fact. It's not something visible or that people can necessarily understand, which I have found the hardest part. It's easier to joke about loosing your marbles than it is so say "I really, really need some help."

I don't know whether the feelings started from a difficult birth and extended stay in Neonatal, but they certainly grew at an astounding rate shortly after discharge from Paediatric Intensive Care when Wriggles had pneumonia at 6 months old. Then I became quickly swamped, and whilst I could muddle through in the day, when Wriggles was in bed and separated from me, I became a mess. I couldn't eat, drink or sleep, let alone do the washing up. I would sit, glued to the sofa because I felt too leaden to move. I was in a perpetual state of hyper vigilance, waiting ears pricked for disaster to loom again, and would cry silent tears and become surrounded by flashbacks and nightmares of my daughter in distress. The relief after admitting how far things had come was huge. I was told it was a form of post-traumatic stress. Granted, it wasn't going to be the severity of soldiers from combat or people who have suffered horrific abuse or ordeals but in my little world, my family had been rocked as I had stared bleakly at the prospect of losing my child. I was started on sertaline and began counselling in earnest with a wonderful psychologist who had had a premature baby herself previously, which acted as an excellent bond and feeling of trust that she knew what I was going through. With support, the acuteness and rawness began to fade and I began to gain confidence and relax. Daytimes became better, where I could revel and immerse myself in Wriggles without inhibition and slowly I re-learnt to be "normal" at the end of the day and enjoy working. Unfortunately Wriggles had other ideas and an admission lasting nearly a month and enduring a mis-diagnosis of queried brain damage with an unsafe swallow triggered everything off again. I regularly would "hear" the noises of the ventilator and alarms going off and would burst into tears at anything. Thankfully, I was in good hands and able to get back on track with the healing process and shaking things off before a welcome break in the hub of my family over Christmas.

So what now, five months on? Where did I slip again when it was all going so swimmingly? Wriggles is 19 months today, it is just a year yesterday since leaving the hospital after our PICU scare and she is blossoming all the time. It isn't as simple as accepting things are better and consequently getting on with things. It isn't as simple as processing memories. I suspect that like everything, it needs time and these are relatively early days. I imagine also the sense of responsibility and physical demands of being the sole carer as a single parent have not helped, draining me of some energy and quickening the need for maturity and stability. Of course I wouldn't have it any other way, and I would do it all again to have my little girl with me. But once you have been gripped by the fear, it is all too easy for your brain to muddle up facts with emotions and responses with feelings and turn a vulnerable mind into a seemingly random generator of reactions. Depression and anxiety can be bred from post-traumatic stress, they can be there independently. It is beside the point how they got here for me, only that they are there and it is the physical symptoms of them which made me go to GP this week and resulted in some weeks off. It isn't as easy as pointing at a specific memory and saying, "yup, that one there. Zap it" as it is far more complex, especially as some upheaval and work-based anxiety is very much playing into this at present. It wasn't easy admitting it this time and agreeing to take time off. I have been encouraged to in the past but always declined partly for feeling it would be selfish. Yes, it is my responsibility to keep our heads above water financially. But it is also my responsibility to make sure I can care for Wriggles to the best of my ability to ensure that she remains the happy and healthy toddler she is. 

I am confident I can return to being myself, i just need to harness this blasted anxiety and stem the flow of overpowering emotions that come from memory which will enable to me to clearly deal with everyday worries rather than letting them get out of control and taking on exaggerated and fictitious fears. Much of the feeling is a peculiar form of grief and guilt. One blog I enjoy has put this into words better than I can here. It feels wrong to use the word 'grief' without reference to a bereavement, as I am acutely aware how lucky I am not to have had to deal with such and my heart goes out to all that sadly have. The feelings are similar though, and in my experience can stun you into a sense of separating from the rest of the world. Asking for help and admitting that I can't just lock a box of the past away has been one of the hardest things I have done, and I am not naive enough to think it will all just magic away and that there may be repercussions in how people tread in the future. But that is another day. For now, I am looking after Wriggles, and looking after myself *puts kettle on".

"Normal"

Yesterday morning I was idly listening to the...gulp...Archers omnibus, whilst chasing a newly crawling Wriggles around when I heard the storyline about a heart attack. Bloody Archers, first they have the premature baby storyline (reduced me to hysterical tears over the dinner table at Christmas just weeks after Wriggles reached 'term') and now one about hearts! A lump rose to my throat and I was transported back to the Intensive Care waiting rooms of my father and beautiful daughter within seconds, scared and tired in an empty clinical world.

I also fittingly read a discussion on "normality" after trauma and if you ever return to your former state or feel like you fit back in with the world. Can you, and are you, 'normal' again?

Loose Marbles

When Wriggles was about 7-nearly-8 months old, it finally dawned on me that it was probably not normal to feel how I did all the time. I did some research and read up on PND and other mental health issues and just wept and wept because it made me accept that I wasn't alone. That thousands of other women, and men, had experienced similar and had been able to do something about it. The relief was huge and when I spoke to my GP who understood, it felt as if a weight had been pulled from my shoulders, leaving me that bit more free to go on.

"Losing your marbles" is quite an apt expression I feel. For me, it did feel as if slowly pieces of me were rolling away, gathering speeding and disappearing into crevices and cracks in the floor. Tiny bubbles of worth, personality and reason, encased for safe-keeping in beautiful shiny glass, rolled off out of reach. They were slippery and looked as if they might be lost forever. Enough to mourn but as each one fledged, too tiny to bother to rescue. 

Until, into the future, one day you stub your toe and come across a forgotten treasure. Tentatively you inspect it, running your fingers over the glossy shell and peer into the wispy colours inside. Preserved is part of you, returned after a journey of loss. Sometimes you might find several at once, sometimes just one and it is months before you even recall that there were others. I am beginning to feel as if I can account for most of my missing marbles and am slowly amassing the blighters and trying to find a Safe Place to put them where they will not roll off again.

When I was in the midst of depression, it felt as if I had lost all of myself, I was just a creature wading through day to day. My feelings were muffled, my thoughts worthless. I could function practically, but I felt alone with no one to hear me. I had lost my compassion to myself and my rationality that allowed me to deal with the everyday and my innermost thoughts. In the daytime, my daughter acted as my rock, weighing me back into life and stopping me from floating away. She bound me to life and made me want to 'get better' and find everything I thought I had lost. When she went to bed and wasn't physically with me, I would fall apart night after night. It's not easy admitting you need help, especially not as an adult with responsibilities. I felt I should know better or be able to give myself a good talking to, to snap back into reality. Oh, if things were that easy! And of course it wasn't that easy merely knowing who or what was my reason for trying to find the light again. I felt like a zombie caring for her some days and my heart continually lived in my mouth on the edge of a panic attack. 


Wriggles is now 17 months old. I still feel anxious and exhausted, but I don't feel desperate. I have found an understanding, both with myself and with depression. It is no-one's fault. It is a thing, not a persona. It is thoughts, not reality.
It is something that can go away and will go away.

Separation

Imagine your child can't be home with you.

Imagine, just imagine. Imagine leaving your child, having to say goodbye and walk out the door. It's hard isn't it? I'm not talking walk out the door to go to work, to have a haircut, to have five minutes peace, but to walk off for the night and not return until the morning leaving a vulnerable child. I don't have to imagine, I know all too well.

Wriggles, my baby daughter is 16 and a half months old, 488 days. Since the day of her birth, I have spent 72 nights apart from her. That is almost 15% of her lifetime, not being there in the dark hours to attend to her every need. 15% forfeiting motherly duties and feeling helpless and guilt that my child may well be scared, being looked after by strangers. Of those dreadful 72 nights, 61 were spent in Neonatal Intensive Care and then Special Care as a neonate, needing to get to the optimum stage of getting home. The last 11 were while she was 6 months old in Paediatric Intensive Care. Between the remaining 85% of night times, we have spent numerous nights in hospital wards. I don't care to specify numbers or days, all I know is that it is quite a lot. Thankfully, those nights I spent sharing her bedside or cubicle in a pull-down bed, a fold out chair or a camp bed. They were tough, yes, but I was just so grateful to be with her I couldn't give a hoot. Because leaving your child at bedtime and not coming back is, well I can't find words for it.

Bizarre.

Heart-breaking.

Wrenching.

Guilt inducing.

Surreal.

Shameful.

They maybe are a few, but they don't even come close to summing up the well of loneliness and emptiness that you carry with you. Never have you feared silence so much, never have you keenly felt the emptiness of your arms.

There is no etiquette either for how to act. When Wriggles was in Special care and not in any immediate danger, there were the conflicting assumptions: 1) that life had to go on and 2) I should be by her side. It is not physically possible to spend every waking minute beside an incubator, for some parents it is not possible to spend every single day. Yet the times you are not there, you are in a daze, a sort of no-mans land. Time is not as you know it. During the SCBU stint, I had one night where I went to the ballet, taken by a friend who thought I needed distraction (she was right, it turned out to be a crucial night for straightening my thoughts. My premature daughter never left my mind throughout the whole performance, and it was this that really hit home just how much everything meant. As the saying goes, you can run but you can't hide) and for four weeks when I went a little potty, returned to work 20 hours a week in the office. That definitely was a mistake. I could barely concentrate at work, I resented being there however much I needed the money knowing that imminent single-parenthood was around the corner and a long stretch of time off work caring for a child on oxygen, and I ran myself ragged trying to simultaneously be at hospital and office and continuously running (literally, I must have looked mad) between the two, which luckily where a fifteen minute walk apart. I also had to collate all baby items that I had not yet bought in that time and rapidly sort out finances and living space. I would stay at the hospital late into the night and would sleep with a increasingly crumpled photograph of my daughter on my pillow. It was no replacement.

Intensive Care was different; her health was an utterly different state of affairs and the experience was far harder. Again, I knew she was in the best hands and separation was a medical necessity but sleeping away from your critical child is not something that is easy. In fact, sleeping may be an overstatement. Can you imagine going to bed without hope? Waking with a hollow dread-alone? A bed had never seemed bigger and night seemed cruel.

We still share a bedroom now, thankfully back in our cosy flat. At first, after the times apart it was a comfort to share a space and know I was not even metres away from her, but could reach out and brush her cot with my fingers. Now she is getting older, I just have not had time or spare hands to move my bed in my own room and give us both some grown up space. I will do very soon, it is time to move on and put some of the past to rest. The bad times are over, and we pulled through, Wriggles triumphant. Now I sleep every night with my snuffler and I love it, whether through the baby-monitor or my own ears.Until she is old enough for sleepovers or I have gone mad with baby-chatter, I will be uneasy unless we are under the same roof each night. It makes me feel safe to know she is nearby. There has been enough separation. 

This is part of the Yummy Mummy campaign for CLIC Sargent, raising awareness for children with cancer. Visit www.yummymummy.org.uk for information and fundraising ideas and search Twitter for #dosomethingyummy. No one ever expects it will be then, but what makes the difference if it is, is knowing that there is help and support available.

Go to Nickie at I Am Typecast to view others and see what she has to say.

Growing Up: Wriggles in Review in SCBU

SCBU felt like a very transitory place. It certainly did not not enhance any feeling of parenthood, and in many ways was quite bleak as no one wanted to be there and being there is something of a dread for any expectant parent. When your baby is born all you want is to hold them, have them with you, go home and start life. You do not want to be stuck in a clinical environment physically separated from your child, having limitations on contact and involvement and holding your breath, waiting to see if the next day holds good or bad news. For newborns, bad news should be that they have been sick for the millionth time and you have officially run out of clean t-shirts. It should not be that they have required resuscitation, have a life-threatening infection or have had a brain bleed which may or may not affect their development and life chances.

We spent nine weeks in total on the unit; one week in NICU (Intensive care) and eight weeks 'feeding and growing'. We were one of the lucky families. Nothing majorly serious happened during our stay which was as straightforward as it can be for a premature baby. Yes, it was one step forward then about six back, yes she still had apnoea's (stopping breathing) and bradycardias (slowing heart rate) meaning she needed varying degrees of stimulation, yes she needed various medication to get her through to the next step, yes she required breathing support, but she was not affected by many of the afflictions which sadly too many premature babies and their parents have to experience. The only blip was, after being in air for a few weeks, she began to tire and had to go back on to low-flow oxygen via a nasal cannula. Unfortunately, rather than wean her back of this her requirement crept up and when she started oral feeds (34 weeks gestation) she needed more and more. After fits and starts, she began to get the hang of bottle feeding and as the magic words "home time" began to be whispered it looked like she was going home on oxygen.

 

Many parents are left reeling from SCBU months and years later. It is such an alien place that is to the be the ground for the some of the best and worst moments of your life as a family.  You have a baby; but you don't have a baby. And few people understand. They try, people really try but again, it is so alien.What do you say to someone who has a baby in a critical condition? What can you do for a friend who is experiencing grief? It is human nature to put a good spin on things, "don't worry, it'll be alright in the end", but sometimes this is not what we need. Personally, I felt desperate that people should acknowledge how hard it was. I mean, can you imagine leaving a tiny, sick baby while you go home? Can you imagine giving birth then existing separately whilst other people care for your baby? Can you imagine asking permission to just touch their hand? On one hand, you are so grateful to the medical staff for saving your baby, ensuring you do have a happy future, but on the other you are almost seething with resentment that it should be you taking care and being a parent.

Everyone deals with the experience very differently. This briefly was mine, and in hindsight my pleas I wish I had had the strength to say out loud to people at the time. They may sound selfish in places, but I cannot convey enough how distressing it can be:

• This is one of the hardest times for me. Don't try and make it better: the only way it is better is either by turning back the clock or turning it forward being at home
• Please don't crowd me. I spend all day, whilst sitting solitary by an incubator, surrounded by people who rightly know all my private business, who record things I might say and who know every movement I make.
• Please let me get to know my baby first. I know everyone is excited by a new baby and wants to take part, meet them and have fun but I am still bonding with my baby. It is hard, really hard. Let us have some space. We will be glad of the company when we are ready, but only then.
• I really don't care if your next door neighbour bar two has a cousin twice removed whom was born 16 weeks early and now is a Nobel prize winning weight lifting millionaire hunk
• Don't keep saying it will be alright in the end. That is one of the worst things about this: there is no way of knowing if it will be. 
• Once we get home, it will be like starting all over again. My baby might be well over a month old, but will likely only be reaching the stage of being effectively newborn. So it might take a lot longer than you think
• This will not go away overnight. I might really need a shoulder to cry on months down the line. Repeatedly. Please don't tell me to pull myself together and be grateful. It still hurts.

Before I even started blogging myself, here are three great posts by other bloggers about life in SCBU and how it feels, how frustrating it can be and how to help a friend or relative who might be experiencing it:

Edspire

Mummy Pink Wellies

Diary of a Premmy Mum

SCBU seems to sum up having a premature baby; it is a physical place where we can attribute blame or sorrow if we need to, rather than a more abstract concept or uncertainty that does not have a name. I treasure my keepsakes for being physical bits of history at a time where I was mentally struggling intensely and was for the best part on another planet just to get through, which means in part I feel robbed of creating special and happy memories. They and SCBU/NICU are the beginning of a journey which can define some peoples parenting experience, as it does not stop when you leave. I found we had follow up appointments, regular development checks, and when it transpired things were going more slowly, began to receive referrals to more specialist teams. These were all down to prematurity and the long-lasting affects. It never ceases to amaze me that being born weeks early can mean years of catching up. You simply don't pick up where you left off once outside the womb. Many are lucky and catch up between 2-5 years of age but equally many are left with long lasting problems, either physically, socially or cognitively. Of course, like anything these can be from mild to severe and can be managed, but it is not something any parent expects to have to contend with. It does not affect the love you have for your child, it just is something that as a parent you learn to accept and let go of some of your dreams of "My Ideal Perfect Family". It is learning that perfect has many forms.