Back at last!

Little blog, it has been so long! 

After a long drawn out farce (TWO MONTHS, TalkTalk, TWO MONTHS) with installing a new telephone line in our new house, at long last I am finally connected to the Big Wide World again beyond a decrepit and irrational mobile. Wriggles reached the point where taking a laptop to a café or such with wifi to connect with all things online became not an option. I did try once; I went armed with a Mr Tumble comic, two toy hedgehogs, Quavers AND chocolate buttons, the favourite book of the week and spent a terse ten minutes fishing stuffed animals out my coffee, removing CBeebies stickers off my laptop keys and trying to shield technology from a tsunami of drinks, snacks and the sticky hands of a bored toddler who had climbed onto the arm of a sofa and was balancing precariously. Needless to say I got nothing done.

So we have moved in to our new place and have been quite happy pottering and settling in. Although not hugely busy, we have been up to quite a lot and trying to make the most of the brief snatches of sun as well as  drenching mummy  finding out about puddles during the rest of the time. Wriggles seems to have grown up again behind my back. She looks older, less like a typical toddler and more like a pint sized child with a wilful glare. Although she coped well with the move, it does seem to have accelerated her toddlerisms. It turns out I was kidding myself if I thought she had learnt about tantrums before or being a pest. Noise is her forte and she is not afraid to use it, especially if I dare take her shopping in the buggy (otherwise known as a fate worse than death). For someone who cannot yet walk independently she is adamantly averse to spending anything longer than two minutes in said buggy, which is a shame as she has finally put on some weight and at the heady heights of 12.3kg is a bloody great lump.

I will elaborate more but here are some of the things that have happened since the end of March in no particular order:

• physio confirmed that Wriggles will need to start wearing splints (AFOs) for a few hours a day to ensure her dynamic tone doesn't start hampering her range of movement, balance or teach her an incorrect gait pattern (wonky walking to you and me. It has already been noted that she walks a little like John Cleese in Monty Python's Ministry of Silly Walks. Funny now, far less so in the playground). The Piedro boots aren't quite hitting the spot on their own. We're just waiting for the appointment to be measured and fitted for splints. "She can choose her own pattern!" they said cheerfully. I am not sure that will be consolation enough but needs must. No one said things were easy all the time.
• Wriggles has become obsessed with Bagpuss. I admit to gleefully encouraging this as it does beat Baby Jake and other Cbeebies rubbish at times. Her favourite episode is without a doubt the Mouse Mill with the chocolate biscuits, and she asks/demands for "mouse!!!!" or "choc[olate] bi[scuit]" if she claps eyes on my laptop.
• her speech is either finally making some strides or I deserve a degree in translation. We still rely heavily on a mixture of Makaton/BSL signing to decipher sounds, as she can only pronounce either the first syllable or letter but her signing is getting quite clear and she has at least 70 'words' she can use singularly. They aren't all consistent and not all clear, particularly without signing or a context but it has to start somewhere.
• talking of speech, I had to waste several hours of my life throughout April attending a speech and language 'help' group. I am sure those devising it meant well and I truly hope it helped some of the parents attending but I can honestly say I have never felt so patronised, belittled or talked down to by NHS services and I have seen some pretty annoying consultants in my time and had to have a rather humiliating argument in the middle of a ward round in NICU when a consultant questioned my cycle dates and conception date for Wriggles, insinuating I was either fibbing, mad or forgot occasions I may have had sex, in front of a large audience and at a time when I was incredibly fragile, as was she.
• I have had some lovely evenings painting, re-painting and 'upholstering' some rather knackered furniture I own. Thank you Dulux and your 3 tester pots for £1 offer.
• Wriggles has had her first hair cut. I did it in the bath and hated it straight away, although am used to it now. I think it was the shock of seeing her less like a baby and looking more grown up.
• we met a real life baby when my closest friends from university came up for a glorious and memorable weekend, one bringing her 10 month old son. Wriggles was warily fascinated and carried around a photograph of the pair of them after he left and has become very interested with the idea of babies (although does refer anyone under about 5 as a baby). I in turn have also become interested with babies and ever so slightly broody, though this is now wearing off as I contemplate the idea of having two noisebags in the house, not to mention not possessing a man.
• I have ever so slightly started dreaming of trying to re-start non-child related hobbies. Recently we went to a picnic style gig outdoors and I briefly had a turning lindyhopping with a good friend and only fell over once. I danced (badly) all the way through university and it suddenly broke through to me that though I love being Mama I also am beginning to miss being Amy.
• we are officially doing the Blended Diet having confessed to the dieticians who are better than I thought about it. They were very damning on the telephone then turned up with a stack of recipes proclaiming "Shhh! You didn't hear it from us!. Our community nurse advised us to be a bit creative about how long we have in actual fact been experimenting and to let them think it is all their idea. So far, so good. We have also FINALLY added chocolate buttons and Pringles (red flavour only) to Wriggles' oral diet.
• I have my own bedroom back. It feels a little disloyal, but it is minor bliss.
• Wriggles fake-cries to try and get her own way or if I tell her off for being a pest. It can be like living in a very poorly directed pantomime at times. With less sequins.
• I decided to be frivolous and buy Wriggles a pair of spotty Doodles shoes for summer. She calls them her Mr Tumble shoes and definitely prefers them over her Piedro boots. So do I (orthotic benefits notwithstanding). After getting fed up with constantly seeing other toddlers progress so quickly and battling with a newer physio regime of more exercises, a walking frame and seeing on some paperwork Wriggles officially described as 'disabled' I needed something obvious and rooted in so-called normality and it turned out £15 canvas shoes that will probably not last long was it. It felt good. I am acutely aware things could be far more complex but they also at times, wear me down.
• we have found a new music group nearby which Wriggles really likes. This makes me feel less guilty about avoiding toddler groups and dragging my heels about looking at preschools. She has picked up the group routine, language and actions remarkably fast and I am now hoarse at the end of bath times after singing all the songs we have learnt.

Without Faith

I am not a religious person.I never have been, apart from a brief zealous period in the Brownies when I wanted to carry the flag in the Sunday School parade. I completed my A Levels at an Irish Catholic school which strongly resembled a spin off of Father Ted crossed with St Trinians; lessons were cancelled if a crucifix fell off the wall ("a sign"), classes were taught via the medium of various versions of Jesus Christ Superstar (I wish I was joking) and everyone generally ran riot. I was indifferent to the religious attitudes surrounding me day in day out, but really very fond of the community I was in. I became decidedly more atheist after going to university and encountering some for more militant religious types who thought that bullying others because they disagreed was acceptable. I know these were mainly in the minority compared to hundreds of gentle, caring soul but it was an unpleasant eye-opener. My family are not religious but my parents and sister quietly have their own beliefs which they follow in ways they feel comfortable with. My father had a slightly more traditionally Christian upbringing from what he says, but his own way of doing things is more insular and private. Many of my friends have faith, from the agnostic maybes to the very committed. I like the idea, but I just cannot believe. This is not just about religion though.

I often wondered that if faced with a dreadful situation, would I instinctively call on God, a God, any God, multiple Gods, to give me strength? Did I feel atheist because I had never been challenged enough in my comfortable life?

Sadly in January 2009 this was put to the test, when my father having contracted an aggressive infected that was shutting down his body and ulcerating his heart was rushed for emergency and life-saving surgery at a major London hospital. We were were a 33% chance of survival. As we sat in the waiting room all night for 6 hours waiting, watching as dawn broke and the smoke from the incinerator several floors belows curled up into the crisp new sky, I thought many things. I wished many things and hoped many more and worried about stupid stupid things. I wanted to find an inner strength, a inner connection, an inner belief. An all-knowing kind benevolence that could be a guarantee on saving the life of this intelligent and kind man who's life hung in the balance on an operating table, at mercy of the experience and capabilities of a team of surgeons we never met before, and at the mercy of even worse: chance. Chance has no compassion. Chance doesn't care about statistics or history. Chance strikes opportunistically.

But I found nothing. Nothing but blindless hope that I hadn't hours earlier spoke my last words to the man who gave me life and brought me up. I wished and I wished; to no one but the silence that cloaked us. When finally, we were told the operation had ceased and we must now watch and wait to monitor the success of that and the antibiotics, the wishing carried on. Wishing is probably the wrong word; it was to no one but for everything. It was a mundane disbelief that this could not be happening to the strong man I knew. Almost a deliberate lack of acceptance and a need to keep going, for if we did as a family, then he would too. And in April that year, he came home.

Many times afterwards, the odd religious friend who knew about the experience would say, "so surely now you believe, now you have been spared."

I'll admit, that made me angry. Being without the foundations and faith of religion, I did not see how I 'should' be a convert. Yes, my father had been saved. By the quickness of the NHS, by renowned doctors and clever nurses. By luck, maybe, but my precision and skill also. By the brilliance of modern care and the civilised world. If I was to believe, even if I wanted to, and goodness did I some bleak days, where was this omnipotent God when my father got that ill? Who, who saves, would let someone get in that situation in the first place? My atheism was more concrete than ever, although with a much softer edge and more understanding of those who did believe. The attitudes mentioned above did make me cross, but I understood how some people needed and felt healed by religion and their faith. Me, I found the things that got me through was not belief but monotony and memories. Memories of happier times and monotony must pay bills, must eat, must update relatives, must wash, must dress.

And then Wriggles came into the world, 12 weeks early on my bathroom floor.

And again, no God even so much as poked His nose around the door of NICU. If I had had a glimmer of believing, I might have done the religious equivalent of leaving him a sherry and mince pie to entice him into my life to give me some cheer and the best present ever, that was currently fighting in an incubator. But I didn't. I couldn't. Where I imagine some keep faith, was an empty box. A hole that was filled certainly with cautious hope as days ticked by, but not directed anywhere. Again monotony gave me strength. That and an-increasingly dog eared photograph of a little scrap that was called my daughter. In order not to be allowed thinking time, I tried to do everything under the sun. Including a spate at work in the middle of the NICU stay. Partly I was run ragged about finances and a very grey-area-ed work contract, but it also offered some salvation of not having to hope or wish or think or be guilty. Hello you're through to .... can I help you? I could just burble under the surface and then run, often literally, as fast as my legs would carry me through the city centre, up past St James football ground, through the park, past a&e and up, up the stairs into NICU where the world stopped turning again until I left.

She started to look like a shrunken baby, and then came home with me. Life started up again. Things fell into place, ironed out, I tried to forget, but even if I didn't, I had a very real reminder of the happy outcome. I could pick her up and carry her around and kiss her until she got fed up with it. And then suddenly I was in my third Intensive Care unit in two years. 

I didn't find anyone there. I didn't expect too. A little of my heart was feeling hardened to the testing and mostly, I knew that the one thing I had faith in didn't have magical properties or an all-seeing benevolence, reason and complex plan. She did have ten fingers and ten toes though. Having had a taste of "normality" was what drove every day into the next day. I could barely leave her side without feeling that the distance might bring us further apart not closer, so my set up vigil provided my hope. I was touched though by a little community drawn up for me by others.In absence of local family, my circle of friends outstripped any expectation and went beyond the call of duty to bring me food parcels, sit with me silently, bring me clean socks, provide a shoulder to cry on (not that I did. That would mean admitting how bloody terrified I was) and some times not leave until 3am in the morning because I refused to leave Wriggles' side. Until the point my mother arrived, and beyond that, all I had to do was mention something and it was done. If I ever needed belief in humanity and kindness restoring, it was now. They didn't do it because they had to or had been told to or believed it would get them to a better end, but because they cared. On my first mother's day there on PICU I received three cards all "by Wriggles" because no one wanted me to feel alone.

Now that is what I believe in. Love of the here and now.

Choosing to See

One dilemma for parents of ill children, particularly very young ones, is choosing how much to watch with the consent of the medical team; how long to stay and when to leave. As well as being there for your children, you have to protect yourself as you are the adult living with the knowledge, the memories and the decisions.

I was watching the fabulous yet emotionally wrenching Great Ormond Street on BBC 2 this week about pioneering and experimental surgery. One brave set of parents were asked an incredibly difficult question: if an operation was going wrong, would you want to be brought into the theatre to be with your child? I have never been in this exact position, but I have been asked a similar question. When Wriggles was in Intensive Care and had her cardiac arrest, one of the doctors who wasn't doing life saving procedures gently suggested I might want to leave.

I didn't.

"Are you sure?" a nurse gently asked. "It can be very distressing."

I stayed. To her immense credit, my best friend who had happened to be sitting with me at the time, stayed with me. I'm not sure I could watch someone else's child go through that.

Although since I have been haunted by the memories that have been fiercely burnt into my mind, I don't regret it. Some people might see it as rubbing salt into a wound, of doing further harm to yourself, of not looking after yourself. It is a very personal thing and one that I think can only be truly decided by the exact circumstances in that exact minute, and the severity and gravity of the situation. Obviously your own beliefs also play a part and your knowledge of your capabilities. 

When Wriggles was is NICU, I preferred to stay with as many procedures as they would let me. I stayed for the head scans, the retinopathy exam, the blood tests. I stayed when they had to stimulate her at times if she lost colour and had apnoeas and bradycardias. I don't think that this makes me a better person than someone who couldn't stay at all. Everyone knows what is best. In NICU, a large part of staying for procedures stemmed from a sense of guilt and a very precarious mental state that I was in. Yes, of course I wanted to stay for Wriggles' sake but also I felt I had to. As I have written about before, the very early days were a minefield that were dictated by pure shock and with no roots in emotion or rationality. The guilt from this once it passed was horrendous and taunted me that however much I loved her, I could never make it up from the ambivalence of the first days. Of course this isn't the case. I know now that shock and trauma breeds automatic responses that don't reflect love, passion, family, memory or truth. I became a little obsessed with the idea of staying by her as a mark of my devotion. Luckily, I didn't see anything too horrible and was rewarded by being able to sneak extra cuddles as compensation. Had our journey been far more rocky, it could have been a different kettle of fish so close to that time.

Intensive care at 6 months old was a different situation. I was mentally a lot more "with it" and had allowed myself to fall hopelessly in love with my daughter whom I had cared for, for four months since discharge. I didn't have the same conviction that leaving the room was the equivalent of deserting her for good. However, I still stayed throughout the ups and downs. This was very different though: in NICU, she was very sick and very fragile from prematurity. But, aside from the first week of her life, there wasn't a point that either the medical staff or I believed her life was endangered. Vulnerable, yes. Developmentally uncertain, definitely. But on the absolute brink? If anyone thought so, they never said. In intensive care though, she was in a very critical position. At the beginning of the stay, although I wanted to be with her, with persuasion I could walk away and sit next door when they intubated, x-rayed or took bloods from her. At this point she wasn't yet critical so I was confident that I could come back and she would still be there; be mine. The ties became much stronger over the coming days as she became sicker. By day 4 of PICU when she arrested, I was thrown into the dilemma: do you want to watch? 


There was no way I was leaving then. If, in that split second as I had to acknowledge, I might loose her then I wanted to be with her. I wanted the person that loved her most to be within touching distance if the unthinkable happened. It's a funny parallel: you simultaneously never give up hope and believe stronger than you have ever believed in anything in that moment, but at that same time, you have in your face the very real fact that life is hanging in the balance. It is like being on a tightrope, but hugging it tight, so tight as if you will never let go and that is what will save you. I felt the same when my dad was critically ill a few years prior-you don't allow yourself to project that life will cease but yet you know it may and the fact nips on your heels as you run on, believing in love and life. And this is the point where only you can choose what to see. Some people will need to stay; some will equally need to go. There is no wrong and no right. One parent may need one thing, and one another. Each may have regret afterwards, but that will vary massively on the outcome.


We were the lucky ones.


One minute thirty seconds.


It could have been so much longer.


It could have been so much quicker.


It could have been a different story altogether.

Could I do it again? I hope against hope I will never ever have to. It is not something I could ever forward-plan. Ours was a one-off episode and thankfully Wriggles has never been that severely ill again. Yes, poorly, yes needing support, but never like that. Watching and listening to stories of families that live that state for infinitely longer was utterly humbling. Both the children and their parents have strength beyond anything you imagine when your child is first placed in your arms, or through an incubator porthole. Love is a force that truly is incredible.

Shock

I have suffered with mental health and I have known many other people around me suffer. Some have been classed as "severe" and complex, but it wasn't until the last few days that I saw someone truly on the brink. I have seen and experienced debilitating symptoms, breakdowns in communications and relationships, lack of interest and energy in anything and an acute feeling of helplessness and no future but now I've seen the next step when it gets worse. And it is chilling and sobering.

One of my closest friends has had complex depression for as long as I have known her and over the last six or more years has bounced from psychologists, psychiatrists, counsellors, medication and various forms of therapy. Somewhere she lost her footing and the last few weeks, and in particular, since last weekend had been very bleak. On Tuesday things reached a head and also information was uncovered about the extent of what has been going on, the depths of concealment so she didn't worry her loved ones and the ritualistic obsessions which have defined her existence and either accidentally or intentionally endangered her. Eventually she turned herself to the Crisis Team. It was expected she would be admitted to a psychiatric unit or similar care for a temporary period. Whatever she said to the doctor, she was released for the night and her parents decided to come and take her home. The next day was fraught with meetings and then the act of her leaving. It feels very disloyal thinking how she veered in and out of being herself and would flip within minutes to being full of clarity and understanding to being consumed with pure emotion and reaction and would become almost violent and child-like again. It took a long time to get her to leave her sanctuary of her bedroom, which although was understandable from her point of view, was also necessary for her to move forward. It took sedatives to calm her down and be released from panic attacks, before she was driven off down South.

Those of us close to her feel numb to the level of hurt she has felt and that we have not been able to wave a magic wand for her, and this must only be a fraction of what she has been dealing with in her own mind. To be tortured and imprisoned by thoughts is very sobering, especially when they impact on your physical actions and decisions and cloud your judgement from tiny things to much bigger things. It feels almost very surreal when the situation is real, but half of what the things someone says are not "real" except in the briefest of moments. It is very sad to see someone so vivacious, intelligent and talented felled by essentially thoughts. 

It is scary to have a glimpse of what things could have been like for anyone who has suffered from depression or anxiety. I held Wriggles so much tighter the day it all came to light and have done each day since, and been so grateful I turned a corner. And then wept a little inside, that my friend had not reached out for help or let herself lean on us, the way she has supported me. It is such a strange situation; we all felt so guilty for not realising sooner, not delving, not putting two and two together...but were two and two there? Hindsight is so clear but also mixes up the elements and clouds the reality. And whatever hindsight can throw up, the important thing is the here and now: this has happened, it is what happens next that is now important.


I miss her.


I miss meeting up with her. I miss sitting in coffee shops with her. I miss her coming round and playing with Wriggles. I miss the way Wriggles' face lit up when she was allowed to play with my friend's copious bracelet collection. I miss her gentle demeanour. I miss her humour and our funny jokes and memories together.


I so badly want her to recover and yet I don't know how to help her.


I'm not afraid to put my hands up and say I probably don't have a brilliant understanding of how and what she is feeling. I know how I felt but it isn't the same because my experiences were directly related to very specific experiences. I don't have experience of sedatives being used or the particular problems she has, I don't necessarily understand self-harming and even in my blackest times, I can't imagine being that close to the edge, because I have Wriggles. Who knows if I didn't? That thought conjures up an empty void that frightens me.

It was also a very strange split to see as a parent: partly, I was shielded from a lot of things that our other friends dealt with and saw as Wriggles needed me and partly it was a small leap to be in her parents' shoes. It would break my heart if Wriggles was that poorly and I was that helpless. It was really quite terrifying to even contemplate that her perfect, innocent and beautiful little mind might be sullied by other voices muddying it and planting vicious thoughts. 
I have felt very redundant as a friend. In the old days, I would have been in the thick of helping and doing everything I could; now Wriggles is my priority and that means that both practically and physically I cannot always do everything I would ideally like to. I am doing what I can and sadly, that is not a lot. We have been told she needs space and also time with her family who will for the time being be her primary carers again like when she was a little sick child. Their baby. Hopefully they will be enough so that she will not have to be sectioned, something I know frightens her hugely. I know they will do everything in their power and more and that is a relief to know that finally she is being looked after by the people who love her the best. I know as a parent that there is no stone you will leave unturned in the quest to make your child better, whether it be from tonsillitis or depression!

It won't be an easy journey but one that needs to be taken. This is one where you can't just get off.

Holiday

Hallelujah! I have bitten the bullet and booked a flight to go on holiday.  I am shamefully ignoring all carbon footprints and flying to Exeter, as the prospect of 7 hours on a train with a toddler on my own plus buggy plus suitcase sent chills up and down my spine. But an hour and half in a whizzy aeroplane suits us fine, so we exchanged our pennies for a flimsy looking ticket on a budget airline which turned out to be slightly less budget after adding luggage, a seat, and a rather cheekily not-declared-at-first-infant-fare. However, it is done now and so for the first week of August, Wriggles and myself are intrepidly exploring East Devon to stay with my parents and godparents in Sidmouth and probably get rained on horrendously by the beach. 

I cannot wait (no sarcasm intended).

Sidmouth remains a special place in my heart and I am hoping it lives up to expectations to show to Wriggles and pass on some seaside magic. Every year since I was little (really little, as in an actual baby) my family would bundle into the car and drive all the way across the far south east to the far south west for a week in August. My father discovered the folk festival as a be-sweatered and long haired student at university years ago and after he met my mother, eagerly took her with him. It was the moment of truth: would she accept his eccentric hobbies? Luckily for him, she was a touch on the mad side too and has an obsession with the coast so instating it as an annual holiday suited her down to the ground. And then, in the fateful summer of 1987 came an event I would rather not think of. Sadly, it has been brought to my attention regularly by my family who think it is hilarious. As we would drive past a field on the outskirts of the town, one or both of my parents would gesticulate towards a tree. "There! That's where you were conceived! Hahaha!"
Not what you want to hear as a teenager.
While my parents immersed themselves in ill-advised morris or sticking-and-cutting-arts-and-sticky-crafts activities, I grew up over the years for one week in August in Devon from a small shy child to a curious teenager then young adult. With friends I saw annually I went on adventures, learnt why some if not all cider should be avoided, got propositioned by dodgy straw hatted students, fell in love for the first time (not with a dodgy straw hatted student) and slept under the stars. I have so many happy fond memories as well as acutely remembered grumpily sitting in my friend's van in a cagoul, wellingtons, six fleeces with a camping mug of coffee, watching the rain pound the tents. Likewise, I recall my friend hissing "Psssssssst, your tent is about to slide down the hill, quick!!" whilst I was blissfully not-sleeping and having to de-camp rather quickly in the very early and dark hours of the morning, jump into the van and help manoeuvre out of the quagmire that used to be a campsite. Although afterwards it seemed an adventure. Once I had wrung all my clothes out and drowned out the sounds of sodding morris bells.

I hope this year will be substantially drier and warmer. I haven't been back for several years; at least four if not five. I'm sure it will have changed and surprise me and maybe be completely different to how it is in my head. Still, it will be a holiday, a break, a new place. There will be donkeys, cream teas and buckets and spades. Oh, and beardy men jangling around with hankies. Damn, I'd forgotten about them.

We are going to go to the Sidmouth Donkey Sanctuary

Neonatal Charities

As well as large and vital charities like Bliss among others, many neonatal units up and down the country have their own smaller charity attached that supports both the unit itself paying for medical equipment ontop of the NHS budget to ensure the units remain cutting edge, contributing to research projects, looking after parent and family welfare, paying for extra staff and providing support for the families be they in for a day or 6 months.

My local neonatal unit is at the Royal Victoria Infirmary, Newcastle-upon-Tyne. Ward 35 houses the intensive care, high dependency and special care rooms that make up the unit. It cares for over 600 babies a year born anywhere in the Northern region and at any one time can take 34 babies. It is one of the bigger units in the UK and last year, won the Big Heart (by Mother & Baby magazine and Bliss) award for Neonatal Unit of the Year; not a prize taken lightly when you think of all the fantastic units that save lives every single day. It is by sheer luck that it is my local unit. After university, I applied for jobs liberally and it just so happened my first offer was in my university town of Newcastle so there I stayed in a city suburb, before my daughter came along very prematurely in a matter of a few months. Because of the size of the unit and the specialist Intensive Care it provides, it meant we did not have to be transferred, potentially many, many miles away like many families.

Isabel

I have always loved the name Isabel.

I don't know where I first picked it up or heard it, but it has always since I was small, thought it would be the name that my daughter would have. I'd been adamant about it and like many girls, dreaming of my first baby. Baby Isabel. No doubt born into a loving family of two parents almost besotted with each other as much as her. Born into a solid and secure house and to a fufilled mother and financially secure couple. Needless to say, she would be full-term because babies just weren't really born early except in very rare and exceptional circumstances were they? Not anymore.

And then Wriggles was born.

And my hopes and ideals were shattered.

Urgh

"Mummys aren't allowed to be ill." My Dad

They certainly aren't allowed to be ill when there is just one parent, an absence for 300 miles of family and your fall-back best friends are on holiday in London or Canada. Yesterday, I was caught utterly short by this predicament.

I have been exceptionally lucky and only be truly knocked out twice so far in my daughter's lifetime, but they are times I would really rather not repeat. When there is literally no one to step in, it is really tough. Not wanting to sound like a whinger, but surely if there was a benevolent force, single parents would be made immune to all bugs, viruses, lurgies and exhaustion at the pinnacle point of singledom?

"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?

Survival

My family, I reckon, are born fighters. 


Between my immediate family between us we have survived pneumonia (repeatedly and in varying severity), multiple organ failure, sepsis, cardiac arrest and a stroke. The worst culprits are my father and my daughter. 


Three years ago my father wound up in Intensive Care after taking a turn for the worst with what his GP thought was gastric flu. After progressively deteriorating, he was taken to our local hospital where they grew increasingly concerned. Gastric flu or not, they were concerned about his heart and decided to transfer him to a larger hospital with an outstanding surgical team. It happened very quickly; I was travelling down from university as fast as I could and throughout the few hours of my trip he was sedated to preserve his energy and I arrived just before the ambulance did, to transfer him to London up the motorway. We were prepped as to his immediate emergency surgery to repair his heart, which had been damaged by staphylococcus and not gastric flu at all, that was ulcerating and eating away at the muscle. There was a 33% chance of success, but without it, the doctor gave him 24-48 hours. That train journey my mum, sister and myself took was fraught. We were on a knife edge and raced to get to St Thomas' hospital. Once there, we discovered my father was not. We were distraught and immediately thought the worst. A phone call revealed a delay; the local hospital wanted to stabilise him before starting out to give him the best chance.

Don't they know?

My parents have come up to visit. It's lovely, it really is. And yet, I feel so weighed down by their "helpful" comments. It makes me feel like I'm doing it All Wrong.

Do you have any bleach? That [insert name of object] has seen better days.

Hand me a cloth, I just have to clean this/that/everything.

Don't you think it would be easier if you took rubbish out with carrier bags every day?

You don't want to be doing that.

I think it would better this way.

I'm doing my best, I want to scream. I know my home is a bit fuzzy round the edges, I know I could do better, I know I need to do some things differently, but I'm trying. I'm really really trying.

I've been really depressed the last six months or so. Some days, it is all I can do to make sure I eat. Or get up. Or move. Or talk to someone-anyone. I can care for Wriggles by the back of my hand but me? Me who? I'd stopped caring. Me just didn't feature. Anything outside of Wriggles directly simply didn't feature. I could barely sleep, feed or think. I had no concentration, no feelings about anything. No sense of pride, dignity, cleanliness. I did what I could and hid the rest. It was shit. I felt a failure. Don't you know how debilitating it is? It's not just a word or excuse, it's anything but flippant. It's a weight that drags you down. 

I'm getting better now, I am. But it still lingers. And even on good days, I'm still making up time and tidying up from the mess, literal and metaphorical, I slid into. I'm still trying to claw back everything. I'm still trying to find an image other than fear of loosing my daughter and desperately trying to prove I'm capable.

That is why the washing up waits.

Don't you understand?

I struggled. I was ill and a mummy and working. I carried on even when I wanted to hide away. I did it on my own because I had too.

Giving my daughter a cuddle is a more important. For both of us. Possibly more me. She saves me and takes me back to life.

Please give me a break. 

I know you care, I just need to learn how to myself again.

A New Start

I love this picture; to me this speaks of a new start. It is not obvious to anyone but me, but this was taken in my new flat (aka, my home). The only furniture is Wriggles' bouncy chair and a wooden crate pretending to be a coffee table; there are not yet any appliances like a cooker or washing machine, the walls are bare and I think this was taken before the official removal van and moving in day.

When Wriggles was born prematurely, I had not yet had time to sort out moving from a professional flat share into a more family friendly private space, as she came so quickly. I would have had 3 months further to play with if she had stayed inside but it was not to be. Unfortunately things became complicated as she came home on oxygen and so it was with trepidation, that I took her back to what resembled a student flat that I had to share. During the few months I was there, I became very desperate. More than anything, I ached for some precious privacy with my baby.

Finally, somewhere came up. Before moving in came around, we had the Intensive Care shenanigans which brought everything very clearly to me. Once we were out of the danger zone, the hospital felt safe. Although there were people in and out, it was more private and comfortable than my flat. It was bliss being able to shut a door and I dreaded returning home. Thankfully, when I did go back, it was merely days before I could move.  My mum had come up while Wriggles was in hospital and stayed to help us move. She felt closed in on too, and we were so eager to leave to pastures new, that the day before the removal van was booked, we packed large rucksacks and laundry baskets of essentials like the kettle, biscuits, Wriggles' chair and milk, the sterilizer, toys for Wriggles, and an airbed, and got the metro over to the new flat and spent the day in a barren place. We must have looked like lunatics on the platform with binbags of belongings shoved under the pram and on our backs, like refugees. There were ladles sticking out of coat pockets, cushions stuffed in coats and teatowels worn like scarves. It was a cold and drab April morning, but we practically skipped up the road and ran into the bare and empty building. It was bliss. It was so quiet and secret, I felt like I could breathe again. It felt like playing house, proudly organising the few belongings in the bare rooms. We stayed for hours until the sun set and night began to creep in. Reluctantly, we left to put Wriggles to bed, spurred on the the thought of being there the next day. When we moved, it felt as if finally, seven months on from the birth, our life as a family was starting.

That first weekend there, my aunt, uncle and cousin came to help organise the flat. We still had no cooker, washing machine, sofa or chairs, so spent the weekend sat around on the floor, microwaving vats of soup my aunt brought over from her home in Cumbria to eat, inbetween putting up curtain rails and unpacking boxes. We pegged and sellotaped duvets and bin bags as curtains and sat on crates, got lost trying to find Homebase, lived off cups of tea and instant soup-in-a-packet and biscuits, and played and played with Wriggles who adapted marvellously quickly to her new palace. When appliances arrived, they sat in the middle of the floor for weeks like large traffic islands, waiting to the installed. I didn't care one jot. The disorganisation was laughable but yet heavenly.

Having my own space meant the world to me, it meant that finally I could establish a routine, do things as I intended to as a mummy, speak when I wanted to, and deal with everything in my own way. I could ask for help to deal with the depression that had engulfed me, safe in the knowledge that I was allowed to have bad days and that I wasn't under the watchful eyes of people, who had the best of intentions but would never look away. And so I began to find myself as a mummy. With furniture at last.

Click! Learning how to take pictures

 

This rather sums up my "photography resolution" for the year ahead. I have been taking more photographs over the last few months, partly as batteries were on a super-save offer so I actually have spares in the house and partly as I am keenly aware my baby is growing up fast and soon I will have a boisterous child rather than gurgly infant, and only a handful of memories of that first year and a bit which is so precious. It's funny how in the newborn period you wander round as a sleep deprived zombie cursing the days for not going fast enough and 6 months later you mourn the fact that your floppy baffled person is far more person and the baffled one is now you. I took few photographs in the early days in hospital and now regret that. It was painful at the time and still hurts to look back on, but it was still her life and to adopt a talk-show-host-ism "our journey".

So, I want evidence of all the time we spend together. 

Also it will be quite funny when her first boyfriend comes round.

1. Locate manual for camera. Failing that, try to deduce what all the fancypants settings actually mean or failing even that (likely) work out when the flash is needed and when it is not. Likewise when to angle the shot so it is not almost entirely consumed my rare moments of sun streaming in (see above)

2. Try to remove immense quantity of mess from shot

3. Don't let baby too near camera: she will attempt to chew it

4. Lure friends round to operate camera and/or work out the 'timer' setting. There are very very few pictures of Wriggles with me which I find sad as I spend every day with her. I want a physical memory of that for both of us to look back on.

Despite the fact the above photograph is technically dreadful, I quite like it.  Apart from the fact you can't tell I have food on my top, haven't quite brushed my hair and Wriggles has a slightly snotty nose, we appear to have seamlessly blended into one. Awwww....

Harrrrrumph...............I mean happy new year!

Happy new year!

I so nearly managed a "perfect" day. After a blissful Christmas with my family in Kent, we all intrepidly boarded the East Coast mainline yesterday for a New Year at my northern abode. This morning everyone arose rested and ambled around in pyjamas playing with Wriggles and drinking endless cups of tea. At lunch Wriggles finished her two-week boycott of food and demolished not one, but two (TWO ladies and gentlemen) mini fromage frais and ate the corner of a board book for dessert. Mid afternoon, I bundled her up in new woollen leggings and coat and we made forth to the city centre to see an exciting parade.

Waiting for the metro, poor Wriggles was violently sick. She still suffers from reflux and has a over-sensitive gag reflex and not particularly eloquent oral skills, meaning at 16 months she is still prone to frequent forceful projectile vomiting with feeds and sometimes can be triggered by something so much as brushing her lips. I managed to stem some of the flow with her footmuff but she still succeeded in decorating a large portion of the inside of her coat and inner ear not to mention plastering her hair. I really hate reflux. Not just because it involves dabbling around in sick and wearing that popular around strained mums, 'eau de baby's stomach contents', but mainly for Wriggles' sake. It must be so horrid for her, I just want to wave a magic wand and make her a hundred times more comfortable. It also serves as a daily reminder of prematurity and on bad days taunts me. Rational-me knows it is not my fault but a medical condition that could still be there even if she had been a term baby. Irrational-me says it is all my fault and if I was a perfect mummy like I should be, it wouldn't be here tormenting my baby. It also panics me when I run out of baby wipes on a platform in gale force winds already late to meet my family due to misplacing of the baby's mittens.

We managed to make it in without little trouble, located the family, vetoed Starbucks due to a monstrous queue and found a place to watch the parade that was causing this fuss. Now unfortunately since Wriggles' birth, I have gone from a mild dislike of crowds to having panic attacks when in crowded places and/or stressful situations, or sometimes, Just Because. Cheers mental health. However, I have not had a full-blown one since her birthday in September when we went to a singing and music day (how not to appear a normal level-headed potential mummy friend at the local play centre) and later on that day, the post office.As I took up my spot, I could feel my airways tightenings, panic rising and tears springing up. It is not easy juggling a wriggly Wriggles (my sister had commandeered the buggy to house her shopping sale purchases; this baffled me. I literally cannot remember anymore shopping being anymore than a terse trip around Sainsburys and occasionally a slightly dog-eared jumper from Oxfam which is next to Sainsburys) and practising deep breathing whilst trying to stop sobbing and not appearing a lunatic to a) my family who seemed entirely unaware as were busy bitching about the taxi parked in front of their sight line and b) the general public including a picture perfect family stood next to us. When the parade finally went through, it seemed an utter let-down, possibly as I was wishing it to go faster so I could run off, and partly as Wriggles was far more interested in trying to wave at the two-year old little girl nearby and fend off a little boy who wanted to hold her hand (she will not hold hands with strangers. This is the only hint of separation anxiety; apparently I have shouldered the rest of it). The "Norse-themed mythical spectacular" featured dragons, morris men and mermaids as well as some 'wolves' which looked more like rabid lions on a bad hair day. Apart from that, it was extremely jolly I have been told from people more with it.

The rest of the evening passed without offence. The new year came and went; we all watched Cyndi Lauper in a bin liner on Jools Holland and watched some poor fireworks out  the kitchen window. Wriggles slept unaware of the year turning. I sat her down on New Years Eve and explained about the concept of years and celebrations to be greeted with a blank look and a biffed nose. It could have been worse; she is quite partial for biting noses when teething. Mostly this can be relegated to long suffering Mouse, Christmas Hedgehog and Wheely Hedgehog but occasionally she still goes for people's snozzles or Grandma's toes. New Year always feels such a anti-climax after the bustle of Christmas. However, the next day (post-lunchtime) feels like a fresh new start. Which I fully intend it to be. It is hard to believe my little girl will be 2 this year. This last year has been undoubtedly tough with it's frequent and frightening admissions to hospital. When counting up, we spent as much time in hospital as I do work; not a healthy balance to off-set nice time at home. But now we are crossing the magical boundary of most time ever out of hospital......Long may it continue! That is my new years thanks.I have spent a lot of the time of 2011 reflecting and regretting the sad moments, so want to stuff 2012 with as many happy times as possible. Bring it on!

My New Leaf:

*throw out holey tights (they do not magically self-mend and there is only so much nail polish you can apply to "disguise" ladders) and pair up to socks to avert odd-sock crisis on work mornings

* try to be slightly more punctual. 5 minutes late is acceptable. 55 minutes late is not.

*be nicer to nice people and self-I do try my best and that is all I can do

*be less nice to dastardly all-night-raving complaining crack-of-dawn-shelf-putter-uppers (where do they fit in sleep?) rude neighbours

*keep in touch more frequently with my grandparents

*worry less (hahahahahahahha.......................)

*dwell less on the past to create more for the future

*take a picture everyday of Wriggles so I don't forget this fast-moving time where she seems to learn a new skill/cause more chaos every day. I know I will treasure these times when she is a sullen teenager borrowing my shoes

*get involved with Tiny Lives, the local charity that supported Wriggles' SCBU and is a regional unit providing much needed support and funds.

Jingle Bells, Jingle Bells

.......jingle all the way!

Christmas is nearly upon us and I am so excited for it. I have always really liked Christmas (who doesn't apart from Scrooge?) but since having A Small Person it has got a million times better.  It is like it gives you that extra reason to celebrate and deck the house in fairylights. Wriggles isn't generally that bothered with the whole shebang to date, but she does quite like trying to pull the Christmas tree ontop of her head. She is such a magpie (baubles, other people's watches, my glasses, tin foil, mince pie cases, teaspoons, forks, tin openers, the kettle, god forbid once a lunge for the breadknife........) at present as would quite happily spend all the time rolling in the decoration. I finally remembered I have fairylights today as popped them on the tree and it was a treat to see her little face light up. We have also been into central Newcastle to see the legendary deliciously over the top Fenwicks window display, which rendered her a bit nonplussed, and this morning went to the TinyTalk Christmas Party. I have spent evenings this week making her a Christmas tree fancy dress in the style of a novelty pinafore. It was something refreshing from mindlessly debating about whether to wash up and felt like a bit of an awakening of Old Me. BC (before child) I had completed a BA (Hons) in Fine Art and been part of a craft "mafia" and run an admittedly, mini business selling prints and textile good. I would spend regular Sundays lugging wares around craft fairs and inevitably spending all my profits on the cake stall.

I digress; Wriggles today looked as cute as a (festive) button and I am supposed to be packing to leave Sunday morning to battle the intrepid world of the East Coast mainline to spend Christmas with my parents and younger sister in Kent. I am apprehensive about 5 hours on a train with a busy-handed-and-minded baby who is beginning to discover her own mind, but looking forward to being surrounded by family as to me that is the essence of Christmas. The only thing I very mildly dislike about my life, is that I am quite far geographically from my family and being without a partner, it can get a little lonely at times. Day to day I am very content but it would be lovely to see them more often. I am hopeful that in the next couple of years I will be able to move closer, as I'm pretty certain my parents miss seeing Wriggles grow up week-to-week and I would not turn away some more support! Telephones are a godsend, but there is nothing like a face to face blether over a cup of tea. 

It feels as if this is going to be the first Christmas; last year she was "officially" two weeks old and very much a newborn smidge. She was on oxygen and full of the premature baby snuffle (think woodland animal in the undergrowth) and newborn bleat. She slept through quite a bit of Christmas Day and worried most guests who thought she looked very fragile. I was also in a muddle; partly the fug of being a new mum as she has been home a little over a month so i was in the thick of night feeds and erratic routine fatigue, and partly I was still reeling from the SCBU experience. My mum was very keen to show Wriggles off to all but it was simply to overwhelming for me (not to mention the terror of contracting RSV!). "I don't understand" my mum complained after I had a bit of a freak out after being surrounded by her very extrovert work friends who I did not know, "why aren't you PROUD of her? She's wonderful!" I tried to explain but couldn't make her see and to an extent, still can't. It isn't that at all; I am so proud of her it hurts. She is to me, perfect in every single way and more. Every time I hold her, I fall in love all over again. The simple fact is, that after the shock of the birth and hospital, my mind was the fragile thing not her. Whether it was fallout from the months previous, post-natal depression or post-traumatic stress I do not know and it is really beside the point now, but after the weeks and weeks of having to ask for permission to touch my baby, leaving her every night and breath holding after every step back, I desperately needed both time and space to establish the bond proper. In my last post I wrote about the first time we were alone, rooming in. After that blissful weekend, it was nearly five months before we got some space to ourselves as for various reasons I had to return to a flat-share as I was unable to move in time for discharge. I lived with a well-meaning but very challenging housemate in slightly complicated circumstances. It was a bleak time for me as I struggled to accept my daughter would ever love me and that I was a passable parent. I lived in constant fear she preferred everyone else and felt as if I was swimming underwater as the world went about it's business up above with no concern for me. 

This last year has been challenging, but when I look back we have both come on in leaps and bounds. I really could have done without the constant hospital admissions (Wriggles definitely could have done without them) but if I put those aside, I could be a different person from last year. Although I haven't put all my demons to rest, I now have a gorgeous 15 month old who is growing up fast. I have a clear idea of her wants and needs, and we (I think!) understand each other through the medium of raspberries, moos and quacks and errrrr some guesswork. We have a rough routine; I can tell you her favourite things (books; Christmas Hedgehog, stuffed donkey, making noise, Old Macdonald and Wheels on the Bus, peekaboo and spinning toys around) and pet hates (anything food related, wearing any hats apart from party hats, putting her coat on, wiping noses, the hoover), she knows her name and she knows and importantly trusts me. We are each others constants and I adore on weekends getting her into my bed first thing in the morning so we can sleepily come to nose-to-nose and she can blissfully poke my eye out. I can recognise the difference between a rational and irrational thought (mine) and I can ask for help, even if I don't always get it. I know that a bad day does not equal a bad mum and that I am doing my best, which is all I can do, and so far it seems to be working. I would love to say that anxiety is a thing of the past and I am a social butterfly but it is not true-yet! But it is better, far far better. I have had time now, especially since moving in April. It has meant the world and my personal sanity having a space I can call ours, just ours, and being able to establish a private routine and family and to be able to exercise choice on my part of what we do, when we do and who we see. 

This Christmas is a testament to how far we have come AND an excuse for a party!

Books

One of Wriggles' favourite things are books. She cannot get enough. Recently she has begun to be able to turn the pages the "right" way as opposed to reading upside down and back to front. Lift the flap books are a winner although paperback books have currently had to be hidden as her other favourite activity is ripping.

I have always grown up around books and been passionate about reading and important it is so I am delighted she takes such an interest. I have read to her since she was Very Very Small (on coming home initially from SCBU aged 37 weeks gestation, I rather optomistically tried to read her Winnie The Pooh serials by AA Milne; I got stuck for conversation and she nodded off to my voice even when doing a squeaky Piglet and a vvvvvveeeerrrrrryyyyyy meeeellllllannnchollyyyyy Eeyore) and have been egaerly collecting books I loved as a child and new titles since. I have generously given her one whole shelf on my bookshelf but she is already encrouching on the shelf above.

As a student at university, I worked part time in the marvellous Seven Stories in Newcastle upon Tyne, a dedicated centre for children's literature. My job was to be an information point, read stories, lead craft activities related to the exhibitions, sing songs ("If you're happy and a puffin, waggle your tail......") and dress up regularly as a tiger who came to tea or whatever book we were promoting! I adore Seven Stories and am really looking forward to Wriggles being bigger to enjoy it. They have activities for little people to very big people and regularly have authors, illustrators and surprise guests such as The Very Hungry Caterpillar dropping in.

As well as enjoying Grown Up books, I have always had a soft spot for childrens books. They were a love of childhood, but also something I have a deep interest in. I am no budding author but my dream job would be illustrate books. I did an art degree and quickly discovered my favourite area was illustration and design. Sadly by this point I was halfway through a very anti-illustration Fine Art degree but I have pursued it separately. I did submit drawings for a budding author a few years ago but alas have never seen the fruits! I adore collecting images by illustrators though and leafing through texts and layouts. My favourites are Judith Kerr, Lauren Child, Lucy Cousins, E H Shephard, Quentin Blake, Dick Bruna, Catherine Rayner, Jane Hissey and Helen Oxenbury.

If you are a baby here are some recommendations by Wriggles

My Top Books.

*Ten Little Fingers and Ten Little Toes by Mia Fox with Helen Oxenbury
*Peekaboo Peter; a textured lift-the-flap jobby published by Warne, collecetd from Beatrix Potter's Peter Rabbit
*Quack, Quack Maisy by Lucy Cousins
*My Puffer Train by Mary Murphy
*any of the DK Peekaboo series!

Mummy's favourites to read:

*Guess How Much I Love You by Sam McBratney with Anita Jeram
*Alice and Anatole by Sam Childs
*The Tiger Who Came To Tea by Judith Kerr
*Penguin by Polly Dunbar
*Dogger by Shirley Hughes