Back on her feet

After PICU, Wriggles made what appears to be a full respiratory recovery (that is, as well as she was pre-RSV as opposed to amazing lungs) but the impact of being unconscious and ventilated and then bedridden really took its toll on her body and even without the snakes and ladders world that is cerebral palsy, she really took some back steps. When we were discharged she was still having to re-learn just how to sit. Slowly over the coming weeks she rebuilt her strength, but my it was frustrating. For me, but so for her. Her brand new skill of independent walking was so new and so hard-won it really wound her up that suddenly she couldn't do it anyway and to add insult to injury, she didn't always have the coordination to crawl. Although her behaviour wasn't terrible, she was definitely much harder to manage in the weeks leading up until Christmas and she put a lot of her energy into shouting. Loudly.

Although I told everyone I was sure she'd be walking again by Christmas, as the days ticked by and she wobbled through them I begun to wonder if I was perhaps getting ahead of myself. After all, no one imagined she could get so sick so quick, so it was not entirely ridiculous to imagine taking a more semi-permanent back step as a consequence.

And then, just days before Christmas she did it. Again.

I couldn't quite believe it. Just a few very uncertain steps to me in the bathroom ('helping' hang washing...) but they were there.

Then the next day she did them again and again. And that was that. Again.

It is funny how quickly you forget the anguish, the mind numbing crawl of time as each day ticks by with no miracle, the churning of your stomach, the heaviness of your heart when a dream is realised.

I could not have asked for a better Christmas present if I'd tried. And judging by the beam on her face throughout the festive period, neither could she. It really did make Christmas, which went really quite smoothly given the turmoil of the previous month and the uncertainty of the weeks leading up. I am resigned to the fact that thanks to her cerebral palsy, though mild, will always exaggerate bad patches and make her little body work harder than it should have to. It just makes you savour the good bits and the developmental leaps inbetween when they do finally come around.

This week she has finally restarted nursery sessions again. The first day she was happy to go in but rather clung to her 1:1 worker. On day 2, she toddled in cheerfully with a gigantic knitted crocodile stuffed under one arm trilling "bye bye mummy!". Although it stung a tiny bit, it mainly made me feel so proud I could burst that she was such a confident little person given everything she has been through. The progress she has made in just six months is astounding. Of course we've still got hurdles to leap, things to work on, things that are uncertain. But for now, I'm not thinking of that. For now, I'm just enjoying the moments while they are here.

"Why?"

As a teenager, I grew up swiping my mum's Bridget Jones books and reading them, half hoping they were purely works of fiction (as a somewhat scatty hapless seventeen-or-so year old myself) and half hoping there really would be a woolly jumpered Mark Darcy out there as well as a mildly amusing job and good Urban Singleton friends to while away adulthood with. One of the bits that made me laugh was a scene describing Bridget being 'smug-married' at a party by her goddaughter. "Bridget, why haven't you got a boyfriend?" asks the little girl.

Today, Wriggles and I were having a rather nice time at a third birthday party for a fellow special care friend. I was on my turn child-watching in the thick of soft play, when one of Wriggles' fellow comrades turned to me, frowning. She looked over at the table where her baby brother was napping and the area for small people where very-wobbly littlest people were hanging out.
"Amy," she said. "Why haven't you got another baby?"
Oh dear, I thought.
It is bad enough when adults ask; number one reason is because I haven't got a partner. However, I suspected her parents would not thank me for an early induction into the complexities of life, reality and a sampling of biology classes to come. Wildly, I looked around for back up. Where is your own daughter when you need her?
"Shall we have another go on the slide?" I asked brightly.
Thankfully, she shot up the ramp like shouting at me to follow. So I did. You can't ask too many more awkward questions whilst screaming "wheeeeeeeeeeeeeeeeeeee!". And so that was that.

It did make me think though. Really, it was more funny than anything else. Although Wriggles' language is a little delayed still, her peers we know are at the stage where asking "but WHHHHY?" is their favourite past time and for all of them, it is obvious they are watching the world carefully and piecing together information to form the basis of assumptions, beliefs and security. I know she only asked me, because I was there at the time. Although most of the mums and dads I met when Wriggles was small are adding to their families, we were by no means the only one-child family at the party and certainly not within a social circle. I'm pretty sure I was the only single parent there, but that is a whole other ball game and I am secretly quite glad Wriggles has not yet got the words or inclination to ask why she doesn't have a live-in daddy like her friends do. I have no doubt it will happen, probably far sooner than I want or think, but for now I can pass off playground equipment as distractions and pull silly faces as answers. Damn this development thing.

I remember shortly after Wriggles was born, someone well-meaningly pointing out that by embarking on the ultimately probably terribly fufilling path of single parenthood, I was possibly sacrificing things further down the line, or would at least have a lot more obstacles than I might do otherwise. Of course, I don't regret it. I didn't know then and I don't know now how things might have turned out if I hadn't had a child then. Would I have ever had one? Statistically, it is very possible I would. But maybe I wouldn't; and faced with the reality of a small, wriggling bundle of half my genes I wasn't willing to take that risk. I had that chance now and it was unconventional and far from how I imagined, but who knows how life will really turn out? In many ways it hasn't been easy but I cannot imagine life without a child; my child. I suppose now she is reaching the point where equally things medically are settling down and life is becoming more relaxing (that is, more relaxing from a developmental point of view, not actually relaxing because she is a mad as a box of frogs) and also because this is the age where many people around us are having babies, and whether you are in that position or not, it does make you think about how your life is turning out and what it may do in the future: or not. When Wriggles started preschool back in September, there seemed to be babies everywhere and for a while it really hit home that there were very much just two of us and that that was not changing any time soon.

Quite aside from being a single parent, there is also the small question of her prematurity, the effects that have shaped the last 3 years and how that might come into play even if I was in a position to think about having a different family unit. Talking with friends who are contemplating providing a sibling, they are arguing out finances, bedroom quotas, having the patience for dusting out rattles and teething toys-understandably huge decisions after you get used to having one little whirlwind and all the practicalities and emotions they bring with them. When I think hypothetically, quite aside from all of that, I would want the blessing of a very good obstetrician to hold my hand and promise me I would never have to walk into a neonatal unit again, never have a terrible birth, never swim through the fog of skewed mental health, never have to visit and re-visit children's wards, outpatients and think about disability, however small. 

Also, Mr Darcy has not yet put in a permanent appearance.

I never imagined I would have one child on my own. I never imagined until I had that one child, that loving her so much would make me wish for another. I never imagined, as a teenager back then reading fictitious books that life could get really very complicated and that things that look so simple-finding someone you care for and managing a relationship-could be so fraught.

I'll let Wriggles and her friend discover that in their own time. Preschoolers birthday parties are neither the time nor the place. Particularly when there is a Hello Kitty cake to be eaten.

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.