Freedom: proof

Such ordinary pictures, days of nothing special, and yet for my 3 year old each one is a momentous occasion. I took for granted that walking comes naturally to children, babies even, until I had a premature baby who was later diagnosed with spastic cerebral palsy. 

Since the days turned into weeks and then months when allotted milestones came and went, un-met we have done a lot of physio, used gaiters, AFOs, a Kaye walker and a daily muscle relaxant medicine in aid of walking. We have swam, bounced, sung, pleaded over steps and supported, held up and wiped tears when things wobbled. I have cried into my pillow and Wriggles has cried into me (or hit me with a stuffed tiger). But we are getting there. Each step of freedom makes my heart sing louder and if that what it does to me, I can only imagine what it does to an already perfectly confident child like Wriggles, whom quite regularly refers to herself as both "brave" and "clever".

Each step is so hard won: the cruelty of cerebral palsy is that even for those more mildly affected, the tiniest of set backs can prove huge. Each achievement can be crushed by the simplest of things. Growth spurts wreak havoc as muscles and bones grow at different times and rates and the signals in the brain get mixed up. Small viruses sap strength that takes weeks to get back to baseline. In an instant, core strength is halved. Which makes these memories and pictures all the more special. We got there. Wriggles got there.

At the moment, we are still suffering the after effects of Wriggles' recent intensive care admission. She has been out of hospital for two weeks, out of intensive care on sedation for three weeks, but still can only crawl or sit up. Her hard won steps have once again slipped away from her. I know she will win them back again and these weeks of frustration as she yells "I WAAAAAAAAAAAAAALK!" only to fall down because she can't stand up will melt away. It has just been a reminder that the battle is won, but not over. For now.

 

Missing Gaps

Before I jump in with life post-intensive care #2, I'll back track. Wriggles recovered from her tonsillectomy after a tense fortnight of religious administration of Calpol and ibuprofen and by the end of July you would not have been able to tell that weeks ago she had had surgery. Her breathing pattern whilst asleep improved-if anything it unnerved me how quiet she was! I was so used to sleeping next to someone who sounded as if they had tumbled out of the pub after downing their body weight in pints, that to have the serenity of near-silence needed some getting used to. Where as at the turn of the year, I would have to regularly check her colour with a torch in the middle of the night (she had obstructive sleep apnoea caused by the large tonsils and adenoids and a great fear of mine was that she would pause in breathing and just not start again. Her breathing was really quiet noisy and so the moments when she did apnoea were almost deafening in their quietness) I was now prodding her every now and then to check she actually was breathing, such was the change in noise levels! Once we had got through the recommended 10-14 days of rest, there was no stopping her. Especially as we had our first real holiday in the first week of August!

We flew down to the south west coast to spend a week with my parents and godparents in a holiday cottage by the sea. My parents go annually, and have since they met, to a folk festival on the coast and we took full advantage of there being a spare room in a picturesque seaside town with nearby playground! It was wonderful: we spent 7 days surrounded by friends and family, with sunshine, swings and company on our doorsteps. We also got to meet fellow preemie mum and blogger Diary of a Premmy Mum and the delightful Smidge, which was very special to finally meet someone you connect with 'virtually' who knows so much both about your life, but more importantly understands what you have been through and what it means to come out the other side. We slowly made our way back north, but via two more friends to stay with for a few days each that we rarely get to see due to the distance. The last friend we stayed with was one of my closest university friends, now herself a single parent with a beautiful little baby boy and it just rounded off a perfect holiday with someone I adore and who knows all too well the bringing up of a small person alone.

And then, at the end of August and beginning of October, something amazing happened.

Wriggles took her first independent steps. At just shy of 3 years old, she stumbled across to a toy, beaming from ear to ear. I hadn't known she would be able to so soon; I and the physios and doctors had wondered that it might take months or even years longer. But she showed her silly muscles and cerebral palsy just who was boss: her. Not just that, but suddenly she started putting words together, words that just kept tumbling out her mouth. Words I knew were there but for months and months she had been unable to speak and words we couldn't find signing for. And as she let loose the conversational floodgates, with practise her speech began to sound clearer so that other people could understand her too. I always knew she would get there in her own time and I knew it would be very emotional after the pure fight she has had to put up, but it just floored me. To see what she could achieve but above all how pleased she was. You assume they get frustrated, but if they haven't had a skill can they miss it? Judging by her little face every time, she was as happy as I was that she was getting there, if more so. It made the hours of therapy, the tears of heartache and the sleepless nights of anxiety worth it in a second. Of course I would have loved to re-write history and erase the premature birth and magic away the cerebral palsy and development delay, but in this world you can't change the past-but you can make some enormous strides forwards!

Wriggles turned 3 in September: it was bittersweet as usual with sharp memories of the day she was born and the terror of her delivery and subsequent hours not knowing if she were still alive, but fresh with her new skills of walking and talking, it made me proud to bursting point of how far she had come over time and the limitless possibilities she could yet achieve. Disabilities aside, she is a massively stubborn child with a keen streak of independence and knows exactly what she does and does not want, which many a time can cause friction but at the same time can really pay off in making big progress. At the end of the month she started preschool. The idea of preschool had plagued me with so much anxiety, not least because there were a few weeks whereby it appeared that the professionals who support us all appeared to be on completely different pages as to how we would manage preschool and what support may or may not be in place. Luckily it was resolved and after a good bit of prodding, we won funding for a 1:1 support worker for Wriggles. By the time preschool came around, we were both totally ready. The difference in the 10 weeks since we signed the paperwork and when Wriggles' first day was was astounding. I think she would have coped if she hadn't been taking some independent steps and been able to verbally communicate but there is no denying that achieving both those things made the transitional much easier for everyone involved. I wasn't surprised at how easily she settled and familiarised to the new routine and with both excitement and some sadness, accepted just how quickly my little girl who once fitted in my hand, was growing up.

On one hand, I was and am, very excited for this next chapter in our lives as Wriggles is thriving and growing up. And on the other, as silly or selfish as it may sound it just floors me. The last years have been a struggle. There have been some truly special moments and I would not trade any of it as every day has been with Wriggles who has changed my life upside down, but there is no covering up that even on the really good days: life has not been a bed of roses. I hadn't been prepared for parenthood 3 years ago and I was definitely not prepared for single parenthood. When I previously used to think about the future, bringing up a family of one, two or more on my own just did not even get a look in as even an outside possibility. Sometimes though, life has other plans and you either get on with it or you don't. And with some hindsight, it has been non-stop. Hospital admissions, my own mental health battles, health scares, lifestyle changes and the huge unknown that is a child's development when they have problems to contend with...it leaves you running on adrenaline just day to day. Because often if you stop and think, really think about it then you can tip over and fall into a big black hole. But if you keep running, keep savouring those moments of pride, those small steps, those little snippets of ordinary that you treasure for years to come; then that enables the days to keep changing, the world to keep turning and suddenly you get to a point and think, but in a really good way, "how the bloody hell did we get here?". I certainly would not have seen this point when we came home from NICU or even a year ago or less. And that is where I found myself as Wriggles happily settled into preschool and I suddenly could think and open my eyes a little wider. It threw me: for some reason it really rammed home this line we have been straddling, this balance of needs and wants, of what is expected and what happens. Things I haven't allowed myself to think about or miss because I had a very big priority who needed a high level of care all the time. And while that hadn't all just gone away, the world had shifted a bit and the path we have been walking on seems to have gotten wider as there are more possibilities now. As the health and development side of things have became less intense, I find myself floundering a little. I can't wait to enjoy it but a part of me is almost afraid to. Now I can stand and watch Wriggles fly across my vision, giddy with the feeling of being carried by her own two feet, holding herself up tall and proud. It reminds me that that is what I have to keep doing: if anyone can make sure I too put one foot in front of the other and keep going with a smile on my face, it will be her. 

World Prematurity Day

Of the last few months, my blogging status has been utterly AWOL. Life and lack of inspiration got in the way, but with the impending World Prematurity Day I knew I meant to restart recording our story and especially on 17th November to join in sharing awareness with thousands of people about prematurity and the effects of it and how important it is to increase both neonatal and antenatal care. There is a common misconception that prematurity just means small, that is is an event which you leave behind and that children born preterm easily catch up.

Then 12 days ago our life took another rocking which has sharply brought into focus just how important this whole question of prematurity is, even in a medically advanced and developed country. Wriggles was born just under 28 weeks and is now 3 years old. She has lasting effects of prematurity but nothing severe especially compared to some children.

Two weeks ago she caught a cold and became rather snuffly. Nothing out of the ordinary, small children in this season are riddled with colds up and down the country. However it soon became apparent that as with previous times, Wriggles' below average lungs were not holding up brilliantly. We trundled into the hospital where we have open access, sat around for a few hours to be observed and left in time for the fireworks clutching antibiotics just in case. Through the night I grew more uneasy and by morning she was sucking in under her ribs to breathe. I rang the ward again to say we were coming in as I was concerned and so off we went again. On admission it was determined her oxygen levels were dangerously low and we were swiftly transferred to a side room for emergency treatment. Unfortunately she continued to deteriorate despite huge amounts of oxygen and other treatments and by dinner time we were transferred up to Intensive Care and she was put on a ventilator the following morning which she stayed on for 7 days. We stayed in intensive care for 11 days and are currently still in hospital, newly transferred to a specialist respiratory ward still on high pressure humidified oxygen. The isolated virus, RSV is notoriously nasty for premature children. It can be bad news for any young children, particularly babies but for those of us with premature children with chronic lung disease it can be very dangerous. As we found out. As a higher risk baby and one who had required home oxygen for a time, Wriggles received monthly vaccinations against the virus for her first two winters and for protection we cut down heavily on socialising during the season to avoid catching infections. This year, the respiratory team were delighted with her health and having grown to the grand age of 3, the risk factor was considerably lower than previously. Except of course, it wasn't. Because 3 years on, my beautiful daughter has still not recovered strength to effectively fight off such infections and instead had to fight for her life.

During the period we were on intensive care, an alarming percentage of the inpatients were those born prematurely. Some still tiny babies and some like us, who had hoped to have put our prematurity largely behind us. From fleeting visits to those who are longer term inpatients, it was a very stark reminder that prematurity is not just confined to special care units and baby days but is a very real and very scary condition that can impact throughout childhood and for some, into adulthood. It is easy to read the numbers and statistics but faced with a room full of desperate parents keeping vigil by their critically ill children it is hard for it to sink in why healthcare is not finding answers to preterm birth quick enough.

Post-tonsillectomy

For the second time in few weeks, we have waved goodbye to hospital and thankfully shut the front door and collapsed on the sofa back home (in front of Maisy Mouse: I now know most episodes off by heart).

We are now around 72 hours post-op and things seem to be getting better. So far we are infection free and she is still willing to eat small amounts of Quavers. Right up until this morning, Wriggles was still so groggy, tired and weak that she couldn't sit up by herself but today she has been regaining her strength and much more like "my" Wriggles. Just like last year when she had her operation to place the feeding tube and run tests, once she came around she would scream if she was anywhere but my lap. I think I had one bathroom break in 12 hours which was a quick dash to a screaming chorus in the background. It doesn't get easier seeing her in so much distress. As they put her to sleep with the gas, she was still screaming "BACK! GONE! BACK BACK BACK!" as her eyes rolled back and she gave in to the anaesthetic. It must be so horrid to not be able to fully understand a situation and be subjected to strangers doing horrible things to you, even if it is to ultimately help you. Thankfully they got me very promptly as soon as she was in recovery and I was able to hold her close not long after-and not let go for hours!

This time was probably the first time I've felt a bit let down by the hospital. Normally I think our hospital and the trust is the bees knees: it's not perfect and there have been several incidents that has annoyed me, but compared to many other people, the Great North Children's Hospital is pretty damn alright. The first thing was that in recovery they didn't have the equipment to attach a syringe to a feeding tube to give pain relief (you need either a certain type of syringe to screw on the cap and sometimes, an extension set). Whilst she had had some level of pain relief in theatre, she was clearly in a lot of pain still and had been written up for further medicine. Unfortunately, she couldn't have it because there was nothing to give it to her and her swallow isn't safe enough to take it orally (which is in her notes and I had told them before she went in. Several times). The second thing was that despite staying overnight and for the best part of the day afterwards, we never actually so much saw let alone spoke to a doctor after the operation. There were plenty about, but as the hospital is split up into lots of departments and specialities, everyone claimed she wasn't "their" patient so wouldn't add to their ward rounds or check in. As it was, she seemed ok, but I would really have appreciated even a junior doctor checking in, doing a quick once over to confirm she was ready for home. I, and nurse in charge, suspected that as strictly speaking we were there under ENT, who operate from the sister hospital on the other side of the city, the fact was no one could be bothered or had time to come back across to do the necessary checks that healing was underway. After 24 hours, Wriggles was struggling to hold down much in the way of food or drink but mainly because she was so distressed by the constant observations the nurses had to carry out. Once she started crying, she couldn't stop before being sick again. In the end, the nurse agreed to discharge us on the basis that we were covered by community nursing and would come back in if things deteriorated. At the point we went home, we should really have stayed in longer but luckily the nurses agreed that seeing if Wriggles calmed down at home to at least keep more feeds (and medication!) down would be better for her and thankfully that was the right choice.

Every time without fail I forget how temperamental her stomach and digestive system is to any change, let alone anaesthesia, so we are still struggling to reintroduce feeds and get them to stay down long enough to start digesting. I keep telling myself that the most important thing is fluids as if we didn't have the tube, it is entirely likely she may not be wanting to eat much at all anyway so it is drinks, drinks, drinks. I thought I'd cracked it last night with a decent overnight feed, and woke up to find the extension to the new feeding button had somehow come off, thus feeding mainly the mattress with formula and not my daughter. That rather set the tone for a fraught morning not helped by the fact the after being royally fiddled about with, Wriggles does not want anyone doing anything to her. Unfortunately as we have changed feeding tubes, the new ones needs an extension clipping on to administer things and Wriggles does not have the understanding that if she is to feel slightly less rubbish, I need to do about 5 seconds of fiddling in order to administer pain relief and a drink so she doesn't dehydrate (side note: thanks a bunch, heatwave for making sure I need to be even more diligent about shoving as much liquids into my child that she doesn't not want to absorb). As understanding and patient and empathetic as I am trying to be, I had a moment where I slightly lost the plot this morning. Leaving Cbeebies to babysit while I had a shower and fired off a pathetically sad email to my best friend helped as did eating an entire pack of chocolate biscuits (it was a very small pack. Ish) and me feeling a bit more human and maternal by the afternoon.

Poorly children are draining. On top of that, I am absolutely terrified about post operative bleeding, which would merit a 999 call and almost certainly a second operation, and every time Wriggles is sick, starts screaming or coughing a lot I am on knife-edge. One big positive (I think) it that her breathing at night is so much quieter; the immediate downside to this is that it is so quiet I find it hard to relax and sleep myself, safe in the knowledge she is still breathing correctly. Nearly 3 years of a child who sleeps like the sound of a very fidgety hedgehog with a blocked nose has made me very reassured by noise and I am not quite used to this new silent model. What didn't help was that in recovery, the surgeons requested 24 hours of apnoea monitoring before discharge. On the ward, the apnoea monitor kept playing up and going off every 5 minutes so everyone got very fed up and turned it off, deciding to rely on the oxygen saturation/heart rate levels instead. I think my mental state would have definitely benefited from the requested apnoea monitoring to give me some reassurance. Even when she was a baby on oxygen, I never seriously thought about having an oxygen or apnoea sensor at home as I thought it would drive me barmy and fuel my anxiety, but for the first time I am wondering the merits. 

Onwards and upwards. As I keep saying every half hour to myself!

Betrayal

01:08

I can't sleep. In two hours I will get up and turn your feed off and swap it for just water.

At 7 o'clock I will get up again and quietly turn that off and administer your morning drugs.

Half an hour later a taxi will come and we will drive to hospital.

At 8 o'clock we will arrive at Ward 8, Surgical Ward.

At 9 o'clock I will hand you over to the surgeons who will put you to sleep. I know you will resist.

At 10 o'clock you will wake; groggy, dazed, confused, hurting, in pain.

It is a relatively minor procedure; adenoidectomy and tonsillectomy, tube change and endoscopy.

I can guarantee you will not see it that way.

Children your age aren't creatures of reason and rationale. You are not built to know about the pros and cons of surgical proceedures.

All you will know and care is that it will hurt. And that I brought you there.

                                                                                   *

I just crept into your room; serenely sleeping and snuffling away. Your perfect face made me feel a clumsy betrayer as I pictured your face contorted in pain and confusion less than 12 hours later.

I'm sorry in advance. So sorry.

Please remember today: the sand, the sea. The sandcastles, Quavers on the beach. Paddling in the North Sea. Throwing rocks at the sea and laughing hysterically as it "ate" them up and growled "thank you very much." Remember the freedom, the rocks, the little pools of water. Remember the sunshine, the standing on the edge of the shore.

And I will remember too, and grasp with all my memory to your little giggles that rang through today as I try to comfort your cries that I know will ring through tomorrow. 

I'm sorry.

Sorry, Wriggles

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

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

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

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

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

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

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

That I can't wave a magic wand.

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

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

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

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

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

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

Being Diagnosed

It is coming up to year since we got an official diagnosis through for Wriggles and has been playing on my mind quite a lot. I rather wish it would go away, but it appears those memories are filed in good and proper to go down in technicolour glory with other important life events. I can recall vivdly walking away from hospital after an outpatients appointment and saying to my mum in a daze "Wriggles has probably got cerebral palsy." And a few weeks later coming home to a nondescript white envelope bearing an NHS post mark, reading it in the bathroom, my heart thudding as I read the final and official paperwork: cerebral palsy. My head spun and I thought I would pass out. That night was the first time I drank anything alcoholic since Wriggles' first Christmas, desperate to slip into a haze and blot it all out. Desperate to keep on remembering my little girl for being her, not for having a damaged brain. The silly thing was that in all honesty, having a label made things easier. I always knew she was at risk of having something long-term and our physiotherapists were never anything but honest and realistic. But somehow the finality of that moment was a blow. In hindsight it was actually rather a start of a new chapter but at the time I would have given anything for it to have been the end; to have instead passed everything with flying colours and leave all the worry, concern and fear behind.

I spent a long time, both consciously and unconsciously bitter that it had taken so long to confirm the "truth". Cross and hurt that so many times I'd been made to feel inferior and a needlessly anxious mother when in actual fact I was grasping at the right straws. Now the emotion is less raw, I think that maybe we were diagnosed at the perfect time, if ever there was one for imparting news a parent never wants to hear.

At 2 years old, she could sit unsupported, pull to stand and cruise a little. She could just about push a wooden truck or walker along and was an expert crawler. She was finally babbling and increasingly demonstrating good understanding. She had firm likes (painting, Noodle the hedgehog) and firm dislikes (food, nurses). Not wildly remarkable but a good benchmark to that she could make progress albeit on her own terms. Now I look back and wonder, had we been diagnosed earlier, would I have coped as well? Arguably yes because there is no choice in it. But I do feel it would have been harder. If she had been diagnosed a year earlier, I wonder if I would have felt quite desperate in querying her abilities and future. At 1 she could not yet sit on her own, crawl or roll and showed very little response to language. Without a lot of milestones to yet go on, how would I have felt, would I have cried more tears, had less hope? By the actual diagnosis, I had a taste of hope and needed answers. Earlier, I think I needed hope more than anything else. If they had left diagnosing any longer then I know I would have been frustrated, angry at the service provision and anxiously allocating blame, probably much on myself. Around the time of knowing, the gap between her peers and her was growing noticeably wider and explanations were getting increasingly flat and half-hearted. If I hadn't had that magic letter by now, the last months of snakes-and-ladders progress would have been at best bewildering and at worst, upsetting. With conditions come studies, answers, prognosises and research.

 It hasn't been a walk in the park but equally it hasn't been as scary as maybe I thought. One of the main things is that by addressing it and giving it a name, I feel it has given as a bit of a full stop to nosey questions, pitying stares, quizzical enquiries. And for me, rather than wondering why and when my baby girl might achieve what others around her seemed to be doing every two minutes, it has become even more a badge of pride; that despite a lable, Wriggles can do things. If I could show myself, and Wriggles, on her first birthday what she can do now to look forward to it would have been the best gift. If I could have looked these months into the future upon recieving the diagnostic letter, it would have been additional peace. It looks like our world is made up of baby steps, not big strides. Wriggles is getting there, slwoly, surely, with both hiccups and help along the way. It still hurts when I see children far younger run with abandon around the playground but equally, I used to wonder when the day would come that Wriggles could scale a climbing frame, even with help. I'm coming to realise I will never "forget" she has a disability, that it will not go away and that there are many hurdles to jump in the future. But I also now know that that is just one part of life. Diagnosis is not the same as an expectation, either positively or negatively. It is not a marker of what someone will or won't achieve. Some people say a diagnosis is "just words"-for me, it is so much more than that. It is a key, it is a world come crushing down but also a new world opening up. It shifts the angle of your world, but it won't rip it off the axis. Life keeps turning and keeps happening in the bleakest hours to the most joyful of days. It turns out we were living hand-in-hand it cerebral palsy all the time, just now I know it is there. It will always be; disabilities don't take holidays or annual leave. But it's host has an enormous personality and the brighest smile to overshadow it. And that will leave far more of an impact that two medical words ever could.

Tired and Emotional

This week, I prayed for Friday to hurry up.

Not that weekends are generally different to weekends in terms of no extra respite; I've just been done with this week and want a new page, new leaf, new day. Over the past couple of weeks I have been looking into preschools as Wriggles is approaching her 3rd birthday. Once I got over the anxiety of someone else being responsible for her for a few hours a day and the shock of how quick she has grown up, I actually found a setting that I really liked and feel would be really supportive and nurturing for Wriggles. So I put her name down and plop, through the letterbox came confirmation there are two sessions a week for her from late September.

Due to her developmental delay and unpredictable mobility and balance, Wriggles will need support in any setting. Prior to even looking at preschools, I had been reassured she would be funded to have a 1:1 support in a mainstream setting as that is what her needs dictate for her to be thoroughly included and to flourish under. So it was not a nice surprise when I rang up the Early Years team who coordinate support and help with the funding paperwork, to hear they had magically changed their mind. Except Wriggles' needs and development had not magically changed. How about we tried to just 'wing' one session? Not that it was phrased as a question otherwise my answer would have been "how about we, errr, don't?!".

Initially I was too stunned and upset to cobble together some arguments. I spent a few days researching and picking the brains of fellow parents of children with additional needs, friends who were teachers or early years workers and my mother who is a trained SENCO and has been a 1:1 herself in the past to a little boy very similar to Wriggles. Later in the week I rang Early Years back to say I wasn't happy with their 'offer' as I felt it wasn't good enough. Perhaps naively, I thought they were joining our team of professionals to help be Wriggles' advocate, not put spanners in the works and possibly safeguard their own budget. I put my case forward and after a bit of to-ing and fro-ing it was agreed we could apply for 1:1 on both sessions as required and if the funding doesn't come through then she will be deferred until the funding does come through. The parting words from Early Years: "But we'll review again at Christmas for removing support."

She hasn't even started yet and they're talking about removing support?

Not even removing when appropriate?

I must say, it's been an unpleasant kick in the face. We might be back on plan A for the moment, which is a huge relief, but to know that the team we were told was going to work with us, are actively and prematurely contemplating plan B does not make for a relaxing life. I knew anecdotally that it is a sad fact of life, many parents have to fight tooth and nail for their children's welfare but given things have been running relatively smoothly of recent, I had hoped that might not be me. It does not breed trust at all in entrusting my daughter and her needs to other people. Already our paediatrician is recommending one thing only for those in charge of funding to claim he is "overreacting" and out of touch. Last week the majority of the team got together for a TAC (Team Around the Child) meeting which went brilliantly and I left feeling so reassured that finally everyone was on the same page and putting Wriggles first rather than inter-departmental politics, selective listening and budget targets. This partly made the claim from Early Years that support isn't necessary so upsetting-they were there at the meeting and at no point said anything suggesting it or that they disagreed with anything the paediatricans or  physiotherapist said. More than anything, it has heightened a feeling of loneliness that no one else is going to fight for my child like I will. I will fight for what I believe is in her best interests until I am exhausted and content with her provision at any stage; I just wish that there was a more compassionate system in place to actively met a child's needs rather than providing wild goose chases and parents having to argue with someone before they get an answer; particularly if the desired end result was available the whole time.

It has been nearly a year since official diagnosis and the whole business of having to point out the bleeding obvious, that my child is developmentally behind others, yet again takes its toll. It is akin to a neon flashing light screeching DID YOU KNOW SHE HAS CEREBRAL PALSY! Much of the time she is Wriggles, just Wriggles, my beloved Wriggles. But times like this have been a sharp reminder that Wriggles she may be, but a Wriggles with a bumpier path than many. Followed by sharp guilt that we have come as far as we have while others have more complexities to deal with and even less access to services. Life is unfair to too many people in this world and I have a horrible feeling that things become more, not less complicated over time.

Thank goodness for the rewards.

To Wriggles' Father

Unless you live in a cave, you must know today is the day before Father's Day.

Or maybe I just notice it more as a single parent, painfully aware we are missing one half of the parenting team my daughter should have.

Normally I barely register it, so used to it just being Wriggles and I. I am pretty OK with how things are; I've never known anything other than single parenting and it works for us, maybe selfishly but works for me. That is not to say the door is closed, that I have tried to shut you out, shut you up, blot you out. You know where we live, you just don't come knocking. And right now as gifts shops around the UK and the parenting world knows it is the cusp of Father's Day. Call it a commercial ploy, write it off; it doesn't stop it hurting when it rolls around though. Because up and down the country, families, little children, big children, partners of brand new children will be celebrating the man in their lives. And we are missing one; to be honest more than missing you we are missing what we could have had. And a part of me thinks that even if you turn out to be a reformed character in years to come, Father's Day will always be a reminder for me at least of your initial lack of enthusiasm. I hope you step up, truly I do. It makes me feel sick to think my Wriggles might grow up feel ignored, unwanted, not half as special as she is. So I hope you come back for her. I wish you would. Today the world seemed alive with dads. Doting, playful, exasperated, grumbling, adoring dads. Dads there in the thick of them. Some had partners, some were alone. But they were there.

I've just put her to bed. We had a rough bath time after she refluxed and was sick everywhere, crying her eyes out. Exhausted, she fell asleep on my lap as I mindlessly watched The Voice, more listening to her breathing rise and fall than a bunch of hopefuls. Over a hour later as she snored softly and my leg went numb, I softly put her down in her cot. Nearly 3 and she still sleeps deeply like a new baby, fists clenched and face screwed up. All those nights you never saw, the baby years you will never go back. That intimacy of a sleeping child. How did you not want it? Not crave it? My favourite mornings was waking nose-to-nose with a gurgling child, sweaty curls matted on her head. I know you can't always miss what you don't know, but I can't imagine how I wouldn't need that knowing I had a child. My shoulder is now wet with her dribble. I wonder if you'd think that was a bit gross. To me it's a badge of honour.

There is so much I want to ask you but far more so much I am afraid to. In all honesty, I don't think I want to know why you have chosen to withdraw. I am certain it wouldn't make me like you any more. Is it because you're not here, you can't see her and fully experience that love? Is it because you don't understand her disabilities? Is it because you simply never wanted children? Is it because of me, because you didn't love me and therefore don't love your child like you could? All fill me with fear mixed with the unknown it might be none of them. I cannot understand being the one that lives with her, knows her so closely. I can't do anything without thinking of her.

I'm not sure what you'll be doing tomorrow. I wonder if you'll miss her; think of her first thing and last thing. As you see your own father will you wonder what happened to your own fathering? Wriggles is too little I think to understand it all yet. She certainly is not wanting for loving men in her life, thank goodness. That is your loss at this moment in time. The potential for loving divided out between others. Humans are forgiving beings though and love is more complex than we'll ever understand. I know in time if you wanted you could have splodgy hand-printed cards, bent and dog-eared crafty items, hot breathed hugs. But you have to ask; a chosen and deliberate absence deserves nothing.

I will make sure she has a good day tomorrow as always. It will be a strange one. I might have to provide all family roles but it will never be my day. I am not a father. So until you reappear in our lives, her life, it is a day to effectively forget. Just another Sunday. 

Just Because

This week I've started many posts and not finished them as the words just ran out. There is lots I want to say but much of it is going round and round in my head, unresolved. Lots to think about, lots of distinguish. Lots of conflict about if I am just getting wound up or have a point. For now, here are my favourite little feet belonging to an owner who keeps me going.

Mixed Start to the Week

Yesterday we had a respiratory follow up at the hospital Outpatients clinic. Although we have been busy with home visits for physio and a short speech and language therapy group, it has been a while mercifully since we were last at hospital. Typically, it had to be the sunniest and nicest day it has been in a long while (...2012?) so we set off early, driven by Wriggles shouting "[S]WIIIIIIIIIIIIIII[NGS]" like a mad child and shrieking if I deviated to do anything ridiculous like locate shoes, brush my teeth or get dressed along the way. To her approval we got on the bus and arrived at Leazes Park which is helpfully opposite the hospital and houses two playgrounds and a rather large lake containing ducks, geese and some enormous swans. I've waxed lyrical before about our playground love, but we really can't get enough of them. Due to her lack of independent mobility, few other places or experiences give her an opportunity to let off steam and energy at her pace. Or indulge her scarily daredevil side.

 

 The appointment was a bit of a let down. I was hoping we'd see either our named consultant who took us under his wing last summer and made the order to place the feeding tube, or either the other senior consultant or SHO who both know Wriggles very well and whose judgement I trust, which is more than I can say for some of the paeds we have come across. Instead we got a new registrar, who was very nice but also very new and said "Ummmmmmmmmmmm..." a lot. In the end, she waited until one of the senior consultants was free to run things past him, which although was reassuring and improvement from some previous appointments, I'd have preferred to wait and have the actual appointment with him to talk things through myself. 

The upshot was that until we have the consultation with ENT about removal of tonsils and adenoids, respiratory can't really move on with much as things are currently stable but could be improved. Since the tube was placed, the admissions and chest infections have decreased massively. We have had one queried aspiration admission, one viral admission and otherwise have broken the cycle of hell and managed bugs at home...albeit only just sometimes. Now that side of things seems better controlled, it has become increasingly obvious that reflux flare-ups are very much interconnected to chest health. It is quite common to become quite reliant on salbutomal inhalers during a bad reflux patch and Wriggles quite often acquires a blue tinge around the mouth when refluxing. So her reflux meds have been upped and the ENT department are being chased. Wriggles mouth-breathes a lot and constantly snuffles, which could be a symptom of her over-large tonsils and adenoids at least partially blocking her airways. This could potentially be putting extra pressure on her diaphragm, aggravating the reflux. So hopefully, taking them out will make an improvement. Please. If not, a fundoplication was mentioned again-although we have some bridges to cross before that luckily. 

Annoyingly, yet another video fluoroscopy referral has got lost in the system, and until that which will assess how "safe" her swallow is now, we still are a no-fluids-orally zone. By the time we get the VF done, it will have been over a year since Wriggles drank anything and I very much hope our feeding/speech and language therapist comes out the woodwork to help with that as I suspect it will not be easy. She never could drink from anything but a particular teat on a bottle and never thin liquids as she choked, so I do really hope we won't be left alone to learn it all from scratch, especially as a will-be-3 year old is a different kettle of fish to an under 1. After clinic running over an hour late, we then had a nice long wait to pick up new dosage meds from the hospital pharmacy. What a treat.

Frustrated by waiting around, being made to sit in her buggy ("WALK!"...which I wouldn't mind, but she tires after a very minute distance thanks to the cerebral palsy and more common Toddler Syndrome, thus making 100 metres a game of musical buggies) for part of the ride home and life in general, Wriggles resumed her tirade of shouting incomprehensible gibberish non-stop, so once home in desperation I let her torture wash Long-Legged-Mouse who has become the victim for most mischief since Noodle the beloved hedgehog got felt tipped and had to spend the night in the airing cupboard which vexed both Wriggles and no doubt him. In the last week, Long-Legged-Mouse has been attacked with Grandma's blusher, repeatedly drowned and nearly been fed to some giant fish.

I don't know what or whom was wetter; Wriggles, Long-Legged-Mouse, me or the kitchen floor, due to a faulty plug in our water table. All were thoroughly soaked, but it used up a fractious hour and finally removed the traces of makeup from poor Long-Legged-Mouse. I hung her out to dry by her tail (it's a tough life) and filled up a large plastic box with water and bubble bath, stripped off the sopping toddler and let her have an impromptu al fresco "bath" just outside the kitchen door on what I fondly call our balcony. Sceptics might call it the top step of the industrial stairs down to our concrete yard. 

To round it off, we kindly treated both our street and the back street of the next one down to my tuneless 'Five Little Ducks' accompanied by my backing-shrieker before Wriggles paraded her bare bottom for all to see. I wish the NHS would provide at least a complementary bubble bath or such for Mouse Washing or such activities needed post-appointments. I can quite empathise with Wriggles that she does get very anxious during them, particularly when they insist on weighing her and checking oxygen levels and thus is a nightmare as she can't quite calm herself properly after them, but it doesn't make looking after her any easier when she just shouts gibber until bedtime as a result. Maybe next time I'll put it in the comments box.

Mental note: request next hospital appointment to fall on a truly rubbish WET day.

Summer Loving

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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.

Some things what we have been up to...

B

Rather excitingly, this morning I bumped into my ex-psychologist, B, whilst on the High Street of where I live.

I don't mean that in a sarcastic self-deprecating "look how un-exciting my life is" kind of way. I was genuinely excited and made up to see her again. We haven't met in a professional capacity for just under a year and the last time I saw her was the eve of Wriggles' birthday when she called round. I knew she lived in our area and I always keep an eye out for her and she told me today as we chatted she often does the same for us.

Not everyone has had the fortune to have such a good counsellor, but B is without a doubt one of the best things that happened to me along the the special care and beyond route. We first met when Wriggles was about 35 weeks gestation and fighting a loosing battle to kick her growing oxygen habit before discharge. I had become a slight emotional robot between bouts of hysteria and at long last a matron decided that maybe it would be a good idea if I could talk to someone. So B was called down to the unit. Looking back I am so grateful it was her as immediately I felt I could trust her. 

And trust I did. She has seen me at my lowest ebbs and I have told her things I would never dream of uttering to another human being (or even inanimate object for that matter). I think when you are being that open with someone your relationship can go one of two ways; either you can become quite deeply involved or between sessions you can be very measurably detached as a way of self-preservation. Neither is right or wrong, in my opinion it very much depends on the people involved and the circumstances. Personally, for me it was the former. Over the last two and half years, B has exchanged Christmas cards with us and bought Wriggles birthday and Christmas presents, offered to do my ironing, turned up at my flat at night to check I was ok and harangued my GP for not being more supportive as well as taking it upon herself to arrange me appointments when I felt too unwell and worthless to do so. I don't make a habit of nit-picking through job descriptions, but I'm pretty sure that none of the above are present in the remit of a clinical psychologist.

Although of course not the only factor, I feel I owe a lot of my mental health recovery to B who has been a pillar of unwavering support. I'm fully aware that that is her job; to try and make people better by getting them to understand themselves and life a bit more rationally and realistically. But I've always felt she went the extra mile. I have heard so many sadder stories where people very much in want and need of help like me, had the rug pulled from under their feet, were cut off, dropped and told there was no room at the inn, so to speak. So I am beyond grateful to have been able to experience some of the best support that both the NHS and human compassion can offer. When you are drowning in anxiety, depression, fear and living one foot in the past you need someone to keep rooting for you. Someone with complete belief in your abilities and as a person. Someone who will go over the most basic ground and facts and keep encouraging you to put one foot in front of the other. Someone to take your hand and say it is alright. Someone to read between the lines and decipher the detachment. Someone to provoke tears when needed and help stop them. For some people, excellent friends and family are enough, and largely I don't fault mine. But sometimes you also need a bit of professional help, a push from someone who knows the right things to say. Who doesn't think you're mad, dramatic, silly or ungrateful. Someone who knows you are just a bit lost but can help direct you back to your path. 

Next week, we will be moving from our district to another across the city. I had been hoping we would see B before leaving. I know if she really wanted to get in touch, our new address would be on the hospital system and I still have her telephone number, but I still wanted to see her in person. If nothing else, so she could see that the emotional wreck she counselled and help put back together, has blossomed. And Wriggles; whom she has seen both grow up and also sat with me in Wriggles' most critical times and kept us company during lunch breaks during admissions. She has been part of our story and it felt quite fitting to exchange news and personally give her our details before we start a new chapter. Aside from the madness of packing and moving, I feel like I am now ready to say goodbye and move. I have now seen everyone I wanted to in our area and know they will all still be there with several miles between us.

The Walker

This, really splits me.

There is one bit of me which is really excited and so very proud of my little girl for how quickly she took to her new Kaye walker. I am buzzing about the promise of Independence it will give her and how grown up it suddenly feels. Neither the physio or I could not believe how pretty much within minutes she had the walker figured out. After the physio left and Wriggles had an early bath, the first thing she wanted when out and dry was "wheeees" ("wheels" to you and me, not to be confused with urinary activity!) before I had even put her pyjamas on.

And then the other, lesser, but there nonetheless, bit of me can't quite believe that my daughter needs a walker. It is a very obvious looking accessory that both opens up questions, stares, curiosity and I fear ignorance, and is a bit like a flashing sign saying LOOK, SHE HAS A DISABILITY!

Until now, she has gotten about by crawling, holding my hands or pushing a wooden truck at home which was custom made by a very clever dear friend of mine with a penchant for woodwork. This walker though, this is grown up looking. It is also, very medical looking. You could not mistake it for a toy, put it that way. I have known, in the privacy of my home and what I have chosen to share with people, how things lie for us. This is now like an open declaration and one I must call the shots on, as Wriggles cannot direct me. Does she need it? Yes. I believe it will be integral for her social development, confidence and independent skills. I wish I could keep her little and wrapped in cotton well forever, but I can't. It isn't good for her. She needs this.

I think I fear the ignorance and the stares the most. I know I am guilty of looking twice at any child, particularly small children using such devices. Of wondering why, what needs they have that merit it. I know from my own former naivety, that it is all too easy to elicit a sense of pity by jumping to conclusions. Now, as a mother of a child with extra challenges, I know those challenges are a very small part of that child. But strangers don't. And I shouldn't care, but I do. This world is not perfect and I feel that very keenly. I want everyone to see my child is perfect in every way but I worry they will only see the physical imperfection. Of course those close to us and those that matter will accept it because they think my daughter is the bees knees, and for that I am grateful to be blessed with good friends and family. I just wish everyone else was the same!

Brrrrroom brrrooooom

As we are preparing to move house, I have been ever so slightly getting cold feet about moving my toddler. Although this is not the first flat we have lived in (and lord knows we have spent enough time in hospital), this is the one she has done most of her growing up in and the one she remembers. The one she learnt to sit in, pull up to stand, climb up the sofa and hide in cupboards. She can say "home" and signs it regularly, and when we walk up the road towards the bright orange new-build blocks we currently live in, she arms flaps with excitement. It is not perfect by any means (most specifically the ever increasing crime rate and resident police van in the car park!) but in our little 4 walls, we are happy. It is a happy home. It is my sanctuary where I can relax and feel safe. I have been very firm so far with myself packing to push the emotions to one side trying to focus on the good bits of moving and new opportunities, but I will miss the building we made a home for two years. 

Besides which, it has got a just-the-right-height window sill to play cars on!

Culture Vultures

These last few weeks, we have been branching out and daring to socialise a bit more in the world of Small Children and have been to two events in particular which both Wriggles and I loved. Both I was quite apprehensive about booking as her attention span is notorious for being similar to that of a gnat. However, they were both rarely affordable so we braved them and I'm so glad we did!

These last weeks, we went to Wriggles' first "gig" if you can call it that! Folk duo Megson have recently produced an album specifically for young children. "When I was a Lad" is a mix of traditional songs and ones written by Debbie and Stuart Hanna. The self-penned songs fit in beautifully with the older songs. One of our favourites is "All The Shops Have Fallen Down" which is an amusing ode to the decline of the British high street. We listened to a few songs on Soundcloud before going, but most of it was a surprise and all new. The layout of the Sage's Hall Two meant that as soon as we went in, I met my attention-nemesis: stairs. "s'Deps!" gleefully shouted my toddler. I tried to hurry her down them only for her to find an identical few on the other side of the room. However that side was slightly less busy as the floorspace was filled with soft mats and small children, so I resigned myself to creeping up and down some stairs in the dark between songs. We are still very much experimenting with "no" and sometimes, in public, an easy life is called for! I managed to wrestle her onto my lap for the first song, which was rather lucky as tears began to prick my eyes once the music started. It was even quite a jolly song, but something about the rawness of music has a terrible habit of choking me up these days. In the worst bits of PTSD, I used to regularly get panic attacks at music groups and all but cut out listening to music other than the drone of a radio as it made me "feel" too much. Inviting it back into our lives has been really quite joyous; and also is a stark reminder how much I struggled without realising to have something so simple, wonderful and unrelated cut me up so much. The concert was one of those rare occassions where time slips by, and before you know it a good half an hour has elapsed. A few songs I half-recognised from a folk-based childhood and many were easy to pick up. Megson knew their audience well, and had two bubble machines which had a captive audience is raptures. It could have easily turned into fairy-liquid-based pandemonium, but the music was still the overriding element and the bubbles seemed to work in engaging the children more rather than detracting from the experience. We loved every minute; despite not sitting still for more than a minute (and attempting to shamefully charm a poor Granny between songs) Wriggles really did appear to enjoy herself. We listen to the CD regualrly at home, and she has picked up very quickly on certain favourites and the odd sounds and actions. Clearly you don't have to sit still to take it all in! Since the gig, Wriggles claps enthusiastically after she hears every song, be it on their CD, any old rubbish on the radio and sometimes after I start caterwauling a nursery rhyme. She has always seemed very at home at music-based toddler groups and responded best to sounds out of sensory input, so I'm so glad that live music seems to be a natural progression. I've been eagerly devouring the Sage brochure for any further child-friendly events and can't wait to start collecting ticket stubs together. Music was an integral part of my own growing up and is something I really want her to experience, especially in this growing digital age. We will have no hesitation in seeing Megson again and if they are touring near you, do go.

Last weekend was awful, Wriggles caught a stomach bug and as soon as she recovered swiftly passed it on to me. Neither of us could hold even water down, so when we were both human again a treat seemed in order. Northern Ballet have developed a ballet for pre-school children; "The Ugly Duckling". When I'd first seen a flyer I really wanted to take Wriggles, but held out any hope of getting her to sit still for 45 minutes. However after 36 hours of being hunched over a bowl, I thought just leaving the house was worth a try so we headed over to Dance City and I prayed she was not feeling too energetic. As luck would have it, there was a trio of real musicians to play the score and our seats were very nearby. Even if the dancers had never made it on the stage, I suspect Wriggles would have sat transfixed by the sounds of the cello, oboe and flute. Her eyes constantly fitted between the dancing and any new notes creeping in. The choreography had a great mix of humour with a fairly clear narrative as well as showcasing a great first introduction to ballet. Although the audience seemed to be a good 80% or more small girls in tiaras with fairy wands, I didn't think there was anything overtly girly about the production and the boys dancing were both athletic and very funny, especially as frogs. My Wriggler only started to become antsy towards the very, very end which I was very surprised by. Evidently she was drawn into the spectacle as much as I! Northern Ballet are going to produce another show for the pre-school audience in October 2013 which we will definitely look out for. I knew that they have struggled with funding over the last few years, and it was both heartening and a relief to know that quality dance is still accessible and thriving in the North. Whilst it is brilliant we have the plethora of companies and arts organisations in London and the south, it is so important that everyone gets the chance especially whilst young, to be introduced to all these platforms. It might not be everyone's cup of tea and it might not be a priority in these economic times, but arts and culture is something which makes gloomier times bearable and encourages routes of expression which can otherwise become bottled up. My degree was in the arts and I was quite passionate about people having the right to be part of the arts, no matter what background and after graduating become a little jaded and cynical by how the jobs market was and how arts funding seemed to be dropping off the face of the planet. Now Wriggles is at the stage where she is interested in the world, I care a lot more again. I want her to grow up in a world where she can see dancing ducklings and know what a violin sounds like! I've noticed that adverts for The Ugly Duckling have been appearing for it on Cbeebies (albeit gatecrashed by Mr Bloom and friends; please no ballerina potatoes to ruin it) and I do urge to watch it. Live it was an absolute delight and one I would happily go back to see again even without a toddler!