Aftermath

After Monday's letter about the MRI results, I felt hit by a ton a bricks. I don't know why exactly and to be honest a belligerent part of me thinks, look does there HAVE to be a reason? I think it is though because largely I don't have to daily face up to Wriggles having cerebral palsy. I really hesitate calling it a disability or special needs, but have been doing some thinking recently and I guess, like it or lump, that is what it is. At the mild end of the spectrum, but definitely something additional to your average cardboard box menacing child. Of course, we have the daily development delays and tube feedings and pretty frequent contact with medical professionals, but it isn't very often that the words 'cerebral palsy' are mentioned or an in depth discussion is called for. Alluded to certainly, and in many ways her treatment is plotted around it, but the words and discussion of the causes are often dodged largely because it's really not necessary to have a klaxon screaming SHE'S DELAYED! SOMETHING WENT WRONG IN HER BRAIN! I know she has it, doctors know she has it, nurses know she has it...why keep dropping it in conversation if you don't have to and it isn't going to help? The most frequent contact we have is with NHS physiotherapy for children who treat things holistically and symptomatically. So really, they are the ones who deal with it most closely yet because of their approach, it is beside the point what the diagnosis is because they concentrate on making things more comfortable and facilitating development and independence.

 So when we directly deal with it, it feels a bit weird.

It also brings back wave after wave of guilt. We don't know why she has it, but you can bet anything it is to do with her birth/prematurity. I know, in that rational world,I can't change the past and blame is futile. It doesn't stop the emotional sphere of the brain running wild though and slashing the bridges of sanity and reason you have built up. And normal parenting-guilt goes overboard. Am I being proactive enough? Too much? Should I be asking more questions? Looking outside the NHS package? Researching more? Forgetting more? When you start looking there is just so much information and like many things much of it is subjective and conflicting. So do you turn off and trust those caring for you whom you see every few months? Or do you try to forge your own path and hope you get it right? What is the middle ground and how do you stop going mad thinking?

I do my best not to dwell too much on the causes most of the time, the wording, the terminology. There is no point, it is irreversible and like so much of life, it is about what happens now that counts. The young developing brain holds so much plasticity that making an effort now can make a difference. It can't magically create strength where there is none or suddenly whip up a new skill out of nowhere, it can't cure but it can help forge new connections and slowly build up bit by bit to make things just a little easier. So that is what I'm trying to look towards; to focus on. The future. That scary unknown future. But that scary unknown future I could influence. It is just the past has a nasty habit of coming up and biting you in the metaphorical arse when you aren't looking. And that is what I find tough. That and continually accepting our world is not the world other parents dream of. It is like having a secret key to a new world and balancing on wall between the two, moonlighting. It's not a worse place, just different. And after all this is pretty good compensation...

 

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.

Two Years On

Dear Me-Two-Years-Ago,

Hello, it's me from the future. I think you need some help; you're feeling very alone. You think you're grown up at 23 with a brand new surprise baby, albeit in an incubator and trying to Do The Right Thing. You will. But right now the weight of the world is on your shoulders, or at least of your world and that of the little girl in the neonatal unit. 

She's doing so well, isn't she? She's growing as she should be, she is breathing air by herself. But it's so hard to relax. So many ups and downs. Tomorrow afternoon you will try kangaroo care for the first time. I know it's scary, but it's the most special thing having the warm skin and the butterfly heartbeat placed against your bare skin. Try and enjoy the pure magic of it. Weeks down the line you will crave it, hang on to every second. I'm afraid in a few days she will start requiring oxygen again which she will not be able to manage without until she is 6 months old at home with you. Yes that's right, at home with you where she belongs. Your homes will change but one thing won't, and that is that by your side is her rightful place and it always will be.

I know you haven't come to that decision yet. Everything has been so sudden, so unexpected and so many factors are up in the air. You haven't yet sorted things with work. You haven't yet sorted things with her father. You are so far from sorting housing and finances. You have been told you have to wait until her 6 week head scan which is a few weeks off yet, to see if there has been any lasting brain damage or haemorrhages visible at this stage which may affect her development and if you feel you can manage if there is. Right now you are so badly trying to do right by her, you aren't letting yourself truly acknowledge how deep your feelings are. In the very near future you will realise that actually letting your heart rule over your head is not a black and white choice. Because sometimes your heart and head are in compliance, but it will take time for the fog of your shock to subside. Be kind to yourself, you are playing catch up in emotions what you would have otherwise had near 28 weeks to process internally. Love is the strongest of them all and will give you the power to achieve what else needs achieving. Don't be afraid to love and don't be afraid of the future. I'm not saying it will be easy, but once you have love on your side nothing is impossible. Fear isn't a failing.  Listen to people, but listen to your heart. No one else can tell you the truth but yourself. 

You're so worried about being able to provide for her if she is strong enough to pull through and come home. She will be; she may need some extra support which is a theme that will crop up again and again, but it is not as hard as it looks. You think that you ahve already failed her once so why wait to see if you do again: you haven't. 60,000 babies are born too small or sick each year in the UK. If you wouldn't call each of their mothers failures, why call yourself one? It was different, that was all. You're so concerned that you cannot give her what a richer or more traditional family set up could give her. If it helps, I'll show you a secret:

Does that look like a child lacking in joy? In curiosity? In happiness? In love? Children don't care about second-hand or third-hand, about whether the outing was free or cost money and any such prejudice is years off. You can cross that bridge when you come to it; I still haven't yet but I am less scared to now when it comes. But what you need is security and I'm telling you that you can and will provide that. It's so much more intricate than you think and yet so simple. This evening, that same little girl threw her arms around my neck and pulled herself into my lap presenting me with her favourite book. She snuggled into my neck at 8pm, sleepily. Every time I think that someone else may have had that privilege my heart nearly stops. Please let yourself feel, your breed of "rationality" is so far removed from your actual life that it will do you no good to torture yourself with your perceived shortcomings. You are a mother and that is enough. I could tell you all her favourite things, her quirks, her progress, about her funny faces, her noises, her likes, her dislikes, but I'll let you have that fun for yourself.

I can promise you will never ever regret it for a second. You may be tested again and again, you will know grief and sorrow and true fear but you will also know the greatest joys and the most wonderful feelings in the world.

With all my heart,

Me-Two-Years-On

xxx


A bit of background: in the days and weeks following Wriggles' surprise appearance I struggled with the idea that I could be any kind of a parent and provide for her and briefly looked to adoption or foster care, such was my conviction that I would never be able to give her the future I had once dreamt of giving my dream "first child". The further the process got, the clearer I began to actually feel things and realise exactly what I would miss out on, and how that dreams are just that: dreams. That we can create new and better dreams and try and find a route back to our old ones through a different path. And I am so glad I stopped trying to be so "rational" and realised that there is no such thing as perfection, except possibly your own child, who is thankfully only metres away from me asleep now!

Duck

Some days I am like a duck on water, (I was going to say swan but am nowhere near that graceful) on the surface serenely paddling along taking it all in my stride, quacking at appropriate moments, dabbling for leftovers...but on the underneath, frantically paddling to stay afloat and not sink however much I would like to drown in self pity and stick my head under and not come up again for a long long time. Today I am an upside down duck.

There is no particular reason, apart from throwing off a slight cold myself and taking care of a sick child, and carrying on with everything we do everyday in it's tube-feeding, physio-exercises, refluxing glory...oh yes actually, they look some very good particular reasons.

I AM ANGRY. VERY angry. Not at someone or anyone or anything. Just at the sheer bloody unfairness of some things. I know some people believe things happen for a reason. For better or worse, I am not one of the those people. How can suffering in any guise be for good?

Two years ago, my little girl was critically poorly in a plastic box, her little bird like body being pushed to it's physical limits to stay alive. I had held her once.

Two years later, she is lovely beyond belief, full of beans but still needing medical help in different forms to ensure day to day is comfortable and monitored so that things are not getting out of control. Medical science is amazing, I just wish we didn't need it. I am angry that somehow, she came to need it. That she needs tube feeding to protect her lungs, that she needs medicines to stop stomach acid damaging her oesophagus and airways. That she needs exercises to stop her legs, feet and hips from tightening and ceasing or delaying development further. Some days I am so TIRED of accepting and riding the wave of all this vital and gratefully received help and I just wish upon wish things were different.

That she would let herself eat. 

I am her MOTHER. Why can I not feed her in the way we take for granted? 

I want her to experience the delights, the sensory, the social aspects of eating. The pleasurable rituals we play out daily, the tingle, the sharp, the smooth textures, the range of tastes from surprising to comforting. The salivation that comes from it. The pathways our brains make from it. I want her to be able to go for tea with friends. To use food as a means for happiness not just necessity. 

Some days it pains me to keeping trying when she gets so agitated. 

Some days I am very angry that parents have to fight to be taken seriously. It has taken 2 years to finally get doctors to take her reflux seriously and to get to the point where she is 100% tube fed and will be for the foreseeable future. Because otherwise, her already vulnerable chest is at risk. Today I got a review letter confirming that the bronchoscopy, her pharynx is hypotonic (pharyngomalacia: basically "floppy", narrowed and prone to collapsing under strain). This was briefly noted back on PICU when she was intubated at 7 month old! How has it taken until now to get a name? Unsurprisingly, this can lead to feeding problems. Well who would have guessed?!

Mostly I am just furious that things are not straight forward. ALL I WANT IS MY CHILD TO HAVE A PERFECTLY ENJOYABLE UNCOMPLICATED FUTURE. 

Is that too much to ask?

Two Tomorrow

Two. She's going to be TWO tomorrow. TOMORROW. TWO.

I can't believe it.

I feel intermittently delirious with excitement on her behalf, and sick with fear as the memories race through my head.

Two years ago, I was pretty much without a care in the world.

Today, I have a bundle of giggles who also requires a higher standard of care than other two year olds.

Why hasn't there been a fanfare, why didn't a bell toll two years ago? How can it happen so quietly, so unassuming? One day a singleton, the next a mother. One day at home, the next in hospital. And conversely, one day in hospital, the next at home. 

Two years ago I knew little of heart ache and far less about love than I would have liked to think.

Two years later I know the dizzying heights of sheer joy and pure adoration and that love is not soft, it is fierce like a tiger. I know the line of despair, terror and consuming guilt.

A little under two years ago, I bought a book roughly around the time my daughter was in NICU or possibly just came out. The Heart and the Bottle, by Oliver Jeffers. I loved his illustration style, but the book made me cry instantly. It was far more grown up that his previous works, and dealt with love and loss. 

"Once there was a girl who was much like any other

Her head was filled with the curiosity of the world

With thoughts of the stars

With wonder of the sea

She took delight in finding new things

Until one day she found an empty chair

Feeling unsure, the girl thought the best thing was to put her heart in a safe place

Just for the time being..." 

And so, the book examines how when your heart is in a safe place, say a bottle, it seems to fix things at first. Maybe at first it is necessary. But as time goes on, it dulls the world around you. You start to think less of the stars, see less wonder in the sea, and new things are left undiscovered, the world slowly drifting further and further from your island. 

After the shock, and I hate to say it, but trauma, of having Wriggles, I was very afraid to feel. I was afraid to grip any emotion head-on for the fear it would consume me whole for breakfast. All through NICU, I was so desperate to feel something, anything. I felt protective, I felt fiercely protective, but I also felt numb. I felt like I was in a bottle, looking out clearly on the world but with a sheet of glass between us. I could shout but no one could hear me. They could see me, and waved cheerfully. But I could only stand, pressed up, and wish to be free yet afraid of what was out there. I wish I could say that when I brought Wriggles home, the spell was broken. I think very slowly it began to break, but I still felt so fogged. I knew I was in love, but who knew love was so painful, so fragile, so vulnerable and so closely entwined with a deep seated guilt that threatened to destroy things? 

I can't pinpoint when the moment was that things changed, and I found the key to unlocking things. In the book, the girl finds a little friend on the beach who easily unplucks her heart for her. In my life it was not so simple. I was slowly emerging back into the world and allowing myself to sink completely into a devout love with my child, free of any terror or hauntings of the past months of NICU or birth, when she abruptly ended up slap bang in PICU. I knew then what I had to loose, once she was there and it set a terror deeper than anything when I realised that the most precious thing to me might be ripped away again. It was so clear how much she meant to me then and that maybe I hadn't been being true to us both, when I had felt too afraid to love her without abandon. Those days until she was out of the critical period were the worst I have ever felt. Going to sleep with no snuffler by my side felt so bleak, as if the world had stopped turning and lost all it's colour, smells and sounds. I felt bereft, even walking to her cubicle, without her by my side. That moment, weeks later when she came out of her induced coma and I could hold her again was in glorious technicolour. Oh she was floppy, she was pale, she was weak. But she was mine. Mine, mine, mine. I will never ever ever let you go, baby girl. 

Of course, it wasn't as simple as that was that. Having my baby back with me, being back with her all the time was the most wonderful feeling ever and affirmed how much I had given over to her, but when we got home I struggled to deal with how things had gone and fell deep into a state of mental unrest coupled with cripplingly guilt that I wasn't making the most of things. I would walk along and cry for no reason, convinced that however much I loved her it would never be enough to make up for her little life so far.

I don't know when that stopped, but it did or at least got to the point of being manageable and I was able to tell my inner jimminy cricket to sod off from time to time. I began to go to baby groups again, to venture to exotic lands like The Park, The Seaside, Coffee Shops. And suddenly things improved. I began to have conversations with fellow mums and not feel a fraud or a headcase.  I saw my baby for being my baby, not a fragile being with too many miniature scars. I began to see that there was a chance, no a fact, that she loved me back. Last birthday was still a struggle. I was doing better but nearer the date became flustered with too many memories and kept nearly blacking out. This birthday, I think I am better. I am excited. I have done present shopping. I have blown up balloons with a faulty balloon pump: now that is love. I'm wearing my heart on my sleeve now most days. It's frightening because there it is, right there, free for the taking. It's not protected, it could easily be broken or damaged. But it's better than locking it away, isn't it? Better than locking me, us, away. I think. I'm not sure every single day or in every single situation. But right now I am.

Happy birthday in a few hours, baby girl.

Music

I used to love and adore music. I grew up around music; my father sang and played multiple instruments, I had a folk upbringing being dragged from festival to music session to concert and back and one of my earliest memories is my mum, sister and I dancing like loons to Madonna on vinyl around the living room. I had my first teenage kiss at a gig. I spent my university days going to gigs constantly, standing in sweaty upstairs bars listening to the "next big thing" sipping rum and cokes and trying to rock a long shaggy fringe. I could dance til dawn with the best of them. I worked at music festivals and hung out at musicians parties. I was never without my iPod. Even for five minute journeys I slipped my headphones off and let myself fall into the world that transported me away. Music got me though some painful moments; though break ups, through let downs, through my father being desperately ill.

Then I had Wriggles and slightly lost the plot.

Music, once my saviour and emotional haven became something else. Music brought ever conceivable emotion out in me and heightened it all. It forced me to feel things I wasn't ready to feel. It made me connect to things I couldn't. It brought everything back, the good and the bad. It seemed to mock me with it's once-loved melodies whilst I sat there with tears streaming down my face.

So I stopped listening so much.

Music at baby groups made me cry. I have lost count of how many panic attacks I had listening to nursery rhymes or an acoustic guitar. Just when I had stuffed my feelings away and turned over a new leaf, it pushed them to the fore and I bit back howls.

My iPod collected dust. Sometimes I would dance to the radio on good days and Wriggles would giggle at me. I danced more and turned it up.

Instead, I sing nursery rhymes and children's songs. My own voice (tuneless, hardly musical) doesn't count and I can bellow my way through the day. As long as there is no more musical accompaniment other than a tambourine or a rattle, it's fine. 

Incy wincy spider climbed up the water spout...

And then the other night, I dug out an album I loved. As I put it on, the throat constricted and I welled off. But I didn't turn it off. It still hurt, but it also lifted my spirits to something which felt like ecstasy compared to lows of depression. It made me feel alive as a human being again, not just 100% a mother. Or maybe that should be 100% a mother which some added percentage of a person too. I still cry and it still hurts. There are many songs I can't listen too; songs that have no links or bearing with any of my experiences but for some reason still jog memories they have no association with prior.

I'm going to try though. Music is such a wonderful thing and I want Wriggles to grow up with the same fervour I did and hunger for songs and expression. Surely tears can't last forever. I am fed up of being scared and hurting.

An old favourite: Malcolm Middleton, Week Off

2 shoes - 1 shoe = cross mama

Oh dear.

My desperately-trying-to-be-perfect SAHM mantle is slipping. Forget slipping, it has crashed to the ground.

The day started off well. Miraculously we were both dressed, fed and watered by 9am and out the door for a playgroup session at our local Sure Start. We weren't even the last ones in. We played for an hour and a half, sung some songs and trundled off to the high street in our district to collect the new super-duper-high-calorie milk order and have some lunch. As a treat, we had lunch at a cafe and Wriggles had a good go at chewing the crusts of my sandwich as well as drinking a bottle of the new wonder milk. Although slightly over-cast, the sun warmed us and the air was clear so we walked up to the supermarket to collect some bits and pieces. The trouble started there. Not to be out-done by her toddler friends, Wriggles is far too interested in basically, anything other than napping, and is a little monkey to get down at the moment. I wouldn't mind, but without one she is a monster by 4:30pm and dinner, bathtime and bedtime goes down the drain as she is over-tired and answers only to the Bedtime Hour on Cbeebies. Her eyes were drooping as we started down the aisles and so I put up the cover of the pushchair so she could get some peace and drop off.

Wrong.

The next half hour was spent trying to persuade her that napping was infinitely preferable to trying to throw everything out the pushchair and pull things off the shelves. After a while, I gave up and sped round eager to leave. Everything done, in near record time, I suddenly noticed something wasn't right. There were two pink socks poking out the pushchair. 

We came in with two shoes.

One shoes, I removed swiftly and placed in my handbag as one leg is far more flexible and she can take this shoe off with her eyes closed. The other leg, is normally safe and my handbag was out of space. 

Well, safe no more. I will have to find a bigger handbag or some jeans with gigantic pockets. 

We traced out steps back round once, then twice, then three times. Wriggles smirked and giggled.

I could feel my annoyance rising. Not only were we now wasting time in blasted ASDA, there was a really irritating in-store radio with a infuriating simpering woman on it waxing lyrical about Smarties, there was poor air conditioning and Wriggles was now trying to escape and chuck things simultaneously. Clearly naptime was off the radar. After round 3, I gave up and stomped off to the tills then checked in with lost property and customer service. Nothing. 

Why I got so irritated I have no idea. The little shoes weren't very expensive, but they are the only pair we have with semi-decent soles and we are supposed to now be defying all traditional baby-feet advice and wearing something with some support and a grippy bottom to help her muddled-up legs. As I got worked off, I got yet more worked up at myself. Why did I care so much? Big deal, toddlers are contrary and throw things. We loose socks all the time, to the hoover or lord knows where. I am continually puzzling over my diminishing pile of pants and that doesn't try my patience. Still clinging on to hope of a nap, I bundled Wriggles into the parent room to change her and give her a drink before leaving. Again, common sense seemingly flew off in the air and whilst my back was turned for half a second reaching for something, she kicked over the open bottle of milk which went everywhere. And then I ashamed to say, I saw red. I don't know what came over me, but for a few seconds I was furious. I was tired, hot and stupidly the puddle of milk mattered more than my little girl. I snapped crossly at her and tapped her on the leg. Not a proper smack by any means, but my goodness regret coursed through my veins. Hot shame flew over me, berating me. You're one of THOSE mums, you can't keep your temper, you can't look after your own child, you should be ashamed of yourself. You're no better than the young single-mum stereotype. Why don't you pick up a smartprice bottle of vodka and stamp back to your council flat and sit there are swear and ignore your child! Better still, why not put her in nursery where proper adults can look after her. It's not like you're doing a good job. Trying to find some calm, I mopped it up and held her close and looked into her beautiful face as finally she stopped fighting and her eyes fluttered shut in my arms. Gently, I placed her back in the pushchair after a few moments of just being still and walked out, home.

I rarely loose my temper. In general circumstances, it takes a bit to get anything stronger than an "oh, SOD" out of me, far less a raised voice or anything physical. I know I'm quite critical of myself, but on the whole, I am a pretty laid-back flexible person verging on the indecisive and vaguely hippy. I like having a sense of routine but am far from lost without one, and 'make it up as you go along' could be my catchphrase. I don't loose it with Wriggles especially that often, and spent large chunks at present trying to remove her from the bin, stop her tearing pages from books or from stealing biros (honestly, I had hidden every last one high up and somehow she finds ones I never remember owning) and trying to scribble on the carpet. It doesn't rile me. It might make me do some deep breathing but not shout. I am used to recurrent refusal of food, things thrown on the floor and wasted. I walk away. So what the dickens am I playing at today?  I am putting it down to ill-child-syndrome. After a hospital admission, I am often out of sorts. Exhausted mentally and physically and stirred out from having to recount every aspect of the whole sorry story of the last 22 months and pouring over bad memories so that the on-call consultant can get the picture. We leave elated at being let out again, but on a state of high alert trying to remember that things are not going to go downhill. Not this time, not now. My emotions are magnified and my responses less measured and lacking in reason. I feel such a magnitude of responsibility and sometimes with no-one daily to turn to for reassurance, the desire to get it right gets to me and rips out my instincts, temporarily replacing them with someone I don't recognise. Of course, in time everything is back to normal and I am left wondering what I was making a fuss about.


As much as playing hospitals, the reality is that this parenting lark can be hard graft. Just when you think you have sussed out your baby and are proudly imparting advice to those slightly further behind, things change and you have a new personality, new sets of whims, new routine and new parenting attitude to learn and quickly. Mostly, Wriggles is a delight but some recent toddler-ish habits and less attractive traits are creeping in (sleep regression, pouting, the emergence of some tantrums, shaking her head to everything, wilful vandalism of toys, thievery of possessions and lack of concentration on erm, anything). Suddenly I need to clarify my position on discipline, work a new routine which suits us both as a family unit and find tactics to avoid these toddler-isms wherever possible. I have no problem her being herself, but I do not want to stand back in la-la-land watching while testing boundaries becomes deliberate bad behaviour. Granted, we'd have a fair way to go, not least because she is lacking in some understanding still, but I do not want to be in a helpless position because I could have done better at the time. I want to continue being proud of my daughter-and that we did it by ourselves, together.


My mum is an early years worker and I have grown up hearing complaints of parents just not doing enough and I so want to be one of the good ones. Not just for anyone else, but for Wriggles to give her the best start I can. I want her to know she is loved and safe (but not immune to discipline when needed!) and to continue being a pleasure in mixed company and a delightful figure who commands attention for all the right reasons. Of course she is going to test my patience and press my buttons: we are both only human. I think I just need more practise! As much as I am looking forward to a period of time spent the two of us at home, I am also nervous. What if today is a sign of things to come? What if I have got used to bundling her off somewhere else a few days a week and just can't do everything alone? In my heart of hearts, I know that is just parent-guilt speaking. That horrible worm that burrows it's way into your psyche, making you doubt every move you make and pointing out that so-and-so down the road does it better.


It is a little like having a newborn, or equivalent. Everyone says airily "oh it's so TIRING" and you nod politely whilst thinking "how can such a small and sleepy baby be so disruptive?". Then weeks later, you are shrieking "why didn't you tell me what hard work it was! I'd have stocked up on restful cucumber slices, Mozart and gin if I'd known!". Likewise, everyone alludes to the Terrible Twos whilst your cherubs sucks on their toy's ears. Surely they would never...? Oh yes they will. Even the nicest baby has his or her wilful moments. Even Mrs So-and-So down the road. Just because she says it's all fine and they never have a speck of trouble, that is no reason to fall for it. We are all eager enough to trade stories with a comic edge, but more reluctant to share anything that shows us off at our worse. I can't remember meeting up with mum friends or going to a toddler group where everyone trades in expletives and the worst time they lost their rag. Because we all do it. Or will do it. And short of reading your children wrong and being genuinely out of control, they are not the worse for it. After five minutes anyway. 


I left the smartprice vodka on the shelf. For this time anyway.

Fiona

In the last few days I have had a letter from my old paediatric social worker Fiona, telling me that our file is due to be officially closed. She has said she will always be happy to reopen the file and will always be happy to give advice off the record but as we have been without complex medical needs for over six months, for now that is us done and let loose into the big wide world. Although we have not been reliant on her for a long time, it still feels a bit like taking the stabilisers off.

I was first assigned Fiona when Wriggles was less than 24 hours old. In my NICU unit, all parents with children under a certain gestation or those that for one reason or another were clearly going to have an extended hospital stay, automatically were given a health-based social worker. This aggravated many already fragile parents at first, assuming that the referral was a comment on their parent skills or social status, but as it was stressed by the kindly team it was actually to support us and make the neonatal ride easier. I don't know if this is uniform across neonatal units or if it is a service that everyone would welcome, but personally I found it a lifeline. Fiona became a confidant, friend, financial adviser, fundraiser, housing officer, counsellor, advocater, personal organiser and voice of reason at very low times.

"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?

De-Cluttering

I am having a clear-out or clear-up.
I have always been a perpetually messy sort and I am slightly ashamed to let people into my house.


I find sort-outs quite therapeutic too and a little trip down memory lane, finding parts of you that you might have forgotten about. I have a (very large) memory box where treasured birthday cards, postcards, rambling letters and funny post-it notes from friends go. I also have the only physical token of my albeit brief courtship with Wriggles' father, when on our first date after a few glasses of wine we decided to compare handwriting on a scrap of paper. Funny the things you keep. When after a while he disappeared into the ether, or at least, stopping calling me, I meant to throw it out. Now I'm quite glad, not because I have particularly sentimental feelings about or for him, but that there is some evidence that we at least met in a not-just-procreating sense.


Amongst my mountains of things, I also have like every parent, A LOT of baby items. It always amazes me how one small person can take up so much room and acquire so many things in such a short space of time. But acquire they do! And grow, relatively quickly. I now have amongst other things a baby-seat, a moses basket and rocker, a large pram, a sling, a slightly faulty pushchair and a baby bath as well as probably hundreds of clothes, ranging from premature sizes up until 6-12 months. Some is millionth hand already, but most of it is in pretty good condition. And it is taking up room. I have already sorted out some things which have gone into a memory box for Wriggles, and kept first tiny gloves and favourite jumpers, but I am still left with a multitude of things and no one small enough to use them. Recently I began working with Tiny Lives and their Nearly New sales that raise money to support the neonatal unit where Wriggles spent the first two months of her life. In the past I have donated and sold items that I had no use for, and now I am wondering whether it is time to clear out other bits and bobs that I simply have no use for anymore. Many things have had a lot of wear as Wriggles was and is, still a titch, so over the 17 months or 15 that she has been at home with me, she still uses many things more suitable for a 9 month old.