Bright as a Button

Yesterday we had an excellent and slightly rare meeting.

Before Christmas we had a review with SALT (speech and language therapist) who ended it with "I'm not really concerned but....*trots out not one but two further referrals concerning lack of speech*". I was left thinking, jesus woman, just SAY IT-it's alright, I had actually noticed that most two and bit years olds have more than about 10 words on a really good day and thus things weren't running as smoothly as they could! It really frustrates me when people try and sugar coat things before ramming another thing through that just highlights you're in a pickle. I know they do it not to scare you silly and set off  the presence of the almighty (and frequently wrong) Dr Google, but then what actually happens is that you just get a bigger unpleasant shock when surprise, surprise, the next blunt-er professional you see says, "Do you know your child is delayed ...*insert delay shocker here* months?".

So anyway, we were referred to one speech parent & child group and also to the Early Years Support team, who are similar to portage. We are still waiting to the former as there is a waiting list and we had the latter meeting yesterday. It went better than I had hoped. Essentially, it was a play assessment to judge Wriggles' maturity through play and catch a glimpse of what amounts to her learning abilities and to get an idea of her intellectual capacity. Although speech does come into it, it helps to know if you're looking at a child with delay in all areas e.g. immature speech and some cognitive delay or immature speech on it's own. I was fairly confident that Wriggles is more or less on track cognitively and definitely for corrected age; then again I think the sun shines out of her arse so am probably not the best objective judge. 

The meeting was off to a good start when H, the EYS (Early Years Support) worker said Wriggles' reputation had preceded her and she has heard for months from her colleagues who know Wriggles through physio and Splish, Splash, Bounce that Wriggles is simply a sunny delight encased in a mad toddler. Cue first proud mum moment. Together with our SALT, we sat and watched and interacted with Wriggles playing around the room as well as vaguely discussing her history, what else is going on health-wise for her, future plans for nurseries and her communication boundaries. Pretty quickly, H said she felt that there was very little they could do from a referral point of view right now. Wriggles was clearly "as bright as a button" (second proud mum moment) and was demonstrating a good overview of play, both independent and social and seemed to have a good grasp of concepts, problem solving and memory. She did discuss with our SALT, C, about possibly referring us to a group of children with language delay just on single words (definitely us. I will fall over with surprise when Wriggles strings words together) but after the pair of them talked about it, it was decided that although that fits Wriggles' language needs, unlike the rest of the children currently in the group she doesn't have the cognitive delay also, so H felt the group would not push her enough as she needs appropriate input to facilitate speech. 

What this all essentially means, and the main thing that came out the meeting, is that when we come to looking at playgroups, nurseries and school we are looking at going into mainstream establishments. We will stay on EYS books so that when the time comes they can help us pick the most appropriate places and broker any meetings, alongside physio and the community nursing team. Depending on progress, it will need to be liaised to ensure it is a setting compliant with Wriggles' physical needs (which physio would mange, maybe by providing a walker or other mobility aid and possibly some assistance at times) and also a place supportive of Makaton and BSL signing as this still plays a big part in our lives and routine. I had worried that the physical and language delay might hold her back, and in one way it does. I have noticed, in her correct peer group, Wriggles does get left out physically because she hasn't the ability to run off, jump, move around in great strides-she is reliant on someone or something to move her. In a slightly younger group, it is still an issue but less so as slightly younger children don't bat an eyelid about crawling around or having a mum-walker whereas already I have seen 2- and almost 3 year olds 'baby' Wriggles in group situations because she seems at first glance, slightly more babyish in her movements or exchange of communication. But in another way, this meeting affirmed what I hoped to be true, that despite having some extra hurdles to overcome, Wriggles, possibly with some extra support and the right setting, should be able to settle nicely in her peer group and not just cope but thrive. H noted that through play, even though she doesn't have the speech currently, Wriggles demonstrated enough understanding and interest to be more than able to "join in" even in a less vocal capacity. Of course this is very early days, we haven't tried an educational setting yet and there is the whole other issue of needing feeding and a few sensory quirks Wriggles has. But one step at a time.

Because right now, I'm doing a jig on the moon and no-one can spoil it!*

This is possibly the first time we have had a meeting and not come out with another referral or after having another issue flagged up.

This is a great step when professionals note down Wriggles positives as well as problems.

This is one of the first times, if not the first time, I have come out thinking maybe, I am doing something right after all. Maybe I haven't buggered things up for her by either prematurity (thanks a bunch, womb), my own struggles with my mental health or by not being super mum with a play date here, an award winning toddler group there, French lessons, baby yoga, yadda yadda yadda. 

This is a moment I will savour and remember next time some ignoramus says "So, isn't she walking or talking yet? Why?". 

We might not have left behind prematurity or medical needs, but it is so nice to celebrate something for a change with those who oversee her development. And by the way, "nice" doesn't even do it justice. It is EPIC.




*don't you dare. Let me have my minute!

Two Years On

Dear Me-Two-Years-Ago,

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

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

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

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

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

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

With all my heart,

Me-Two-Years-On

xxx


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

Sticking like Glue

The other day I wrote about my sleeping arrangements and my fear of being far from my daughter at night. 

I like to think I'm going to be a cool mum, but I'm having to face up to facts.

I am terrified of being apart from her.

It's not a desperation to apart exactly, more like a terror that something awful will happen and a completely irrational feeling of betrayal. She would be fine, after all, I worked 3 days a week between when she was 8 months and about 21 months. She is now more reluctant to part but is such a sociable thing. It's me.

I thought I had put Neonatal and everything that followed behind me. I received excellent counselling until very recently, took a course of Sertaline (a SSRI anti-depressant also used for anxiety and in my case PTSD) and then unfortunately this summer happened and we got a feeding tube, starting diagnosis and reunited with some of the PICU consultants although thankfully avoided their unit by the skin of our teeth. Right now, two years ago, Wriggles was in NICU and this anniversary period is a funny old time. Full of flashbacks and bittersweet pride. Sometimes I think I over exaggerate the past, and then find a scrap of something from the time and it hits me again like a ton of bricks. She was that small. She was that sick.This lunchtime I was looking at her first nappy size given to me by special care when we left. I was shocked how small it was, fitting in the palm of my hand. I remember her looking dwarfed in it. Curled up in a special nest in an incubator, small, so small, with a huge chunk of machinery attached breathing for her. Then a little white hat keeping the CPAP apparatus on so she could breathe with some help. The feeding tube in for weeks and weeks because she was gestationally too young to have developed the suck/swallow reflex. The weeks and weeks of one cuddle a day, at 3pm sometimes for less than fifteen minutes. Oh god.

When I went back to work, I made myself because as a single parent I felt I had a duty to provide as best as I could and also not to conform to stereotypes. I did enjoy aspects of my job, but after giving birth so much felt like clock watching. There were days I loved and days I hated. The worst bit every morning was saying goodbye at the childminder's. I never dawdled leaving the office, but pelted back as soon as I could. Since being made redundant, Wriggles' needs are arguably a little more complex. Aside from the feeding tube there is a greater understanding of why she gets so poorly, which in itself comes with more caution to be exercised. 

Since she was rushed to hospital late July, we have not been separated for longer than half an hour on a sparse handful of occasions. 

This weekend, I was supposed to be travelling for a weekend away probably involving some babysitting.

This evening I broke down and admitted how scared I am of loosing some control and not being within running distance of my daughter. I have not had a panic attack for a long time, but I sat here, dizzy, tears streaming, my heart racing and my throat tight and painful. It's too soon. 

My worry is, when won't be too soon? She is now 2 and it's not like we're going to be able to forget prematurity or hospital visits for a long time, such are her medical conditions and health. I don't want to become a paranoid overbearing parent, embarrassingly clinging to her trouser leg in the playground. I want her to keep her independent streak that makes her so her and that I cherish for her beautiful personality of her own shining through. I'm going to have to let go in small amounts at some time in the not too distant future, for nursery, then school and my eventual return to work. I'm going to have to trust other people to do their best by her, to learn her cues, to know her danger signs, her quirks, her needs. But not yet, not now. She is still my baby and I am still cocooned in the after-effects of scare after scare. I need to build myself up gradually and look back out into the light. 

I just hope these needs of mine don't step on her needs of finding out about the world without me.

"OW!"

Children are many things, but one thing they definitely are are great levellers. They are excellent at humbling us older "wiser" types by themselves and their defiant innocence and are also good at breaking down barriers between fellow parents that otherwise loom large. I think all us parents are guilty in some capacity of having looked at other parents whom often we know next to nothing about and view aspects of their child rearing with contempt, mild horror or snobbery. I would never do that, we might think. MY child would never dream of doing ... [insert here]....

Until of course, they do.

Even the most perfect and well behaved cherubs have off days. Even the nicest ones learn by pushing boundaries or going a bit loopy. Sometimes the little horrors that we adore and idolise have several off days in a row, leaving you wondering where an earth you went wrong.

In the early days, fresh with enthusiasm and ideals about How I Would Do Things, I thought I had a fairly watertight plan of action to things. Fast forward almost 2 years, and weary cynicism has crept in and the rulebook, or at least dratted baby books and parenting manuals, have been thrown out the window or are being used as doorstops. Of course I still make snap judgements about others much as I'd prefer to say I didn't, but now I do have more compassion for other strained parents and care far less about what anyone might think in turn of me. Not because anything is vastly different, just that like many of us down the road of parenthood, I have realised that babies and toddlers have personalities. They have wills of irons, minds of their own and some inherent behaviour that I swear they swap in code at baby groups that they all seem to do at one stage or another. Even the really nice ones.

And so, today I got bitten for the first time.

Wriggles was having a tantrum. She is teething and it was hot all day. Refusing to nap, I tried in desperation to get her to listen to storytime at the library. She crawled off and went up and down the stairs, shrieking loudly as she went. God forbid, a little boy was in her path, listening innocently to the lady reading a circle of angels a story. Shriek shriek shriek. To try and save the sanity of the little group who were previously shrouded in peace, I removed my small child to go and menace somewhere a few metres away instead. She roared in defiance. I was enjoying THAT PATCH OF CARPET! (I think was the translation). In her thrashings of displeasure, she gave herself a very minor bump of the head which made her even crosser and then sunk her teeth into my arms.

Then I broke the peace of the library and emitted a surprised and pained "OW!"

Although I was surprised at the timing, I was not surprised at the bite. I have been semi-expecting to get bitten at least once, as all the offspring of people I know (apart from those owning the very small) and those I don't whom I may have earwigged on, have been bitten in retaliation, confusion or experimentation by now. I have been under no illusion that I have a child so angelic she would never do such a thing, but have been suspiciously waiting for her to strike and pick her moment. Wriggles is far from a thug, but she is a toddler. A teething toddler who is beginning to discover the power of "no" and not always getting her own way. I do hope it is a one off, but I suspect it is heralding the departure of my snuggly baby and arrival of a foot stomper but (please!) equally delightful toddler-proper.

Like I warily expected the inevitable nibbling of my arm (nibbling sounds too gentle; I have marks to prove it) I expect her to shout at me, have tantrums, mortify me in public, cause me to snap and probably as a teenager tell me I've ruined her life at least once a year if not once a week. Not because I expect or think that she will be a badly behaved child, just that she is a child. And children make mistakes and learn and err, exercise their emotions for want of a better phrase! Even those where the sun shines from every orifice are not perfect. At least they are, possibly, but not every single moment of every day. Which means likewise, there probably isn't a perfect parent out there all the time. Even those that seem to have tripped out of a Boden catalogue with their 2.4 families, pedigree dog and Aga have crap moments when they curse the fruit of their loins and all their teeth/chattering/insults/mess/toys left out ripe for tripping over. 


I just wish they told you earlier!

Tether

One of the cruellest things about parenting and responsibility is the accompanying guilt.

Why aren't I doing it right?

Why is [insert anyone from baby group] so good at this and I am not?

Why do the creatures we love so much try us?

Why do they press our buttons when we just want the best for them?

Why can't I do this?

When can I run away?

What is wrong with me?

Some days it is relentless in it's let up of internal criticism. Some days I just want to walk out the door and I run and run until my feet fall off. Some days I want someone 'proper' to take over.

Of course I don't.

The furthest I've ever run to is my bedroom; just metres if that. I won't even lock myself in the bathroom.

Some days I don't know if it is being "just a mum" or if it is a throw back to the days of NICU and the accompanying uphill struggle that has been oral aversion, recurrent admissions and a scary unknown future. I can't forget. I wish I could. But the pain is still there in the background, lurking. Waiting around the corner. Waiting for the light of my life to close her sleepy eyes when the grief will pounce and smother me until I can fight no more.

I thought I had this depression, this rememberance, these experiences under control. Somehow, behind my back they have broken free of their shackles and crept up to tap me on the shoulder.

I am so tired.

Today it was all I could do but to curl up in ball on the floor while Wriggles pulled everything off the bookshelf half-watching In the Night Garden.

I have no idea what Iggle Piggle did with Upsy Dasiy. My eyes were closed. My brain was numb. I felt nothing, saw nothing, heard nothing. I should have been awake, alive. I should have been playing with my precious child. But I couldn't. I selfishly couldn't find the strength to even sit up or mumble through The Very Hungry Caterpillar.

Why is it all so hard?

When can I move on?

When can I get it right?

When can I have happy moments all day and everyday?

If not for me, then for Wriggles. Please. She deserves it.

2 shoes - 1 shoe = cross mama

Oh dear.

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

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

Wrong.

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

We came in with two shoes.

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

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

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

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

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

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


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


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


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


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

Accepting

Another appointment, another referral.

Sigh.

This time, orthotics. To be fair, it has be brewing a while and the initial referral was made a while ago, then cancelled, and now have been referred again. The physio is happily, delighted that Wriggles is pulling to stand and cruising. It is so lovely to see the professionals involved are really responsive to changes, as if they were family members or friends. The glitch is the old high muscle tone again. It has improved massively, so the hope is that with a helping hand (or foot) from orthotics we can avoid too much intervention. Her right leg which has always been the limb most affected, goes onto tip-toe and the other leg is overly flat-footed which now confusingly smacks of low muscle tone. "She always HAS liked to be confusing," our physio mused. It looks as though until this problem is sorted out, we will not be seeing any unsupported walking as essentially her legs are not strong enough to bear any weight let alone create movement.

Apparently we are likely to be looking at three options.

Option 1 (our physio's preference): supportive or modified shoes to help her feet stay in the correct places and in turn support the ankles which will align the knees and help the hips.

Option 2 (apparently likely to be orthotics preference): splints. Possibly for one leg, possibly for both.

Option 3 (a good idea but our consultant is too good at sitting on the fence for this probably): medication to control muscle tone and eliminate any spasms. I suspect because although Wriggles' problems delay her, they are really relatively mild compared to other children, that this will rule this out. Muscle relaxants seem very proactive for our chilled out medical entourage and I am not sure without a hell of a lot more information how I feel about them. 

I know when the appointment letter comes through I will feel a little bit deflated and a bit sad for Wriggles that yet again, there is something different happening for her. But on the whole, I am glad that things seem to be moving in gaining support and exploring options relatively early to hopefully ensure the older pre-school years and the future is smoother.

As time moves on, I am accepting that the magical "catch up by 2" is unlikely to be applicable to us. Wriggles is doing FANTASTICALLY and there are many areas which I have zero concerns on, but there is no way we will be getting discharged anytime soon. Her current notes record global delays and her feeding and dietary management is still very much a muddle. Ironically, when we left NICU, the consensus was she was "fine" and we would be one of the lucky families with no problems;  a clean bill of health and no developmental glitches. I know it has slightly surprised everyone who has known her since birth or the early days that she is still accumulating both referrals and needing a fair amount of input across multiple areas which will continue to be the case for the next little chunk of her life. I am not expecting to be given a specific diagnosis anytime soon or even if there is one. I suspect prematurity at least indirectly is the root of all of the discrepancies throughout development and that our recurrent admissions to hospital are also playing havoc with getting things moving (literally).

It is a bit of a shock initially to discover that what you imagined rearing a child would be like is actually going to be accompanied by lots of other things from guilt, pain, sorrow, nosiness from others, tuts, opinions, always opinions, and an endless list of appointments and professionals who have suddenly moved in as part of the family. But then again, raising any child is a bit of a foray into the unknown, whether they are a glowing picture of all that baby manuals illustrate or otherwise. The generic e-mails we get and bulletins "Your baby is now 21 months! He/she will be talking in sentences, eating five course dinners of nutritious organic fare, running around and restoring world peace in all corner of the globe" are enough to frustrate any parent who is doing their best only to realise that they are not the ones with the entire control. You cannot force any child, far less one with complications, into achieving beyond their means, beyond their time.

Would I like it if Wriggles walked? Probably, yes. Do I care that she doesn't? Not really, no. Sure, in a 100% hypothetical world where prematurity, disability and developmental setbacks don't exist, that would be super thanks. But they do, and they can affect you, or me, whether we knew or anticipated it or not. It doesn't detract from a child's perfection or innocence. It simply carves out a different path for them to walk, and as I remember all too often, that path nearly wasn't there at all.

As we head towards Wriggles' second birthday, we are slowly gathering in more professionals. At 1, we had our neonatal consultant and a physiotherapist. At nearly 2 we have traded in our neonatologist for a paediatric consultant who also doubles up in neurology, a dietician, a speech and language therapist, our beloved physiotherapist and now an orthotics personage and it is likely we will also gain a respiratory consultant. Proof that you can never plan life. I never expected to have a child with a label, either temporarily or long term. But I wouldn't swap her for the world.

Hands off: she is mine

My girl?

Plop.

Through the letterbox came the written report of the last appointment at 15 months corrected with the paediatric team which had gone fairly well. They were happy to leave it until around August, just before Wriggles is 2 and seemed content that I was doing all the right things and generally being a Good Mama.

"...at clinic, Wriggles was quite happy playing on the mat and was reluctant to go back to you [me]."

Bang.

Like a dagger to my heart.

Inside I crumpled up again, momentarily back swimming in confusion, hurt and rejection. 

After I got over the initial struggle of NICU coming to terms with my very new, very surprise and very vulnerable little scrap in an incubator, I fell in love. There was never a question over that. The struggle I had was accepting that Wriggles felt anything in return for me. This struggle was a very long one and took many session of counselling, many cuddles and many many months (I would say well over a year) until she started blowing me kisses and hanging onto my leg.

 

Parenting is a very unique relationship that breeds unconditional love from the responsible carer towards their dependents. And it is always assumed that this love, in a different more taken for granted way, is returned by the children. At it's least sentimental, because in most cases, the child knows no other parents and no other love. It is the first relationship, and hopefully most long lasting and simplest yet most complicated they will ever have.


When our minds play with our confidence, cruelly, we question even these most basic facts. Whether she knows what love is, I am Wriggles' constant and the person she is with by far the most. I am there morning, I am there night. I am there in the middle of the night. Just me. Just us. I am there in sickness (either of us) or in health. I am there in good spirits and there in a grump. So knows that. As my friend V pointed out recently while Wriggles was blowing kisses to her, she knows what kisses are and distributes them so freely because we have such an affectionate relationship and to her, kisses are the norm, because she has always got them. What a lovely innocent world.

I know the report was not in any way criticising me or suggesting my daughter is indifferent, or worse, doesn't know who I am. It's my fear shouting over my rationale and that if she didn't know my world of security and comfort, she would be fearful to do any venturing. It's just that my (not so) secret fear is that deep down she doesn't understand who I am, and running on from NICU thinks that the entire world is her family, happy to embrace and be caressed by stranger after stranger taking my place.

When I first discovered the world of blogging, particularly those with a premature baby aspect, one of the most important posts I read was this one by Beadzoid. It very much spoke to me and in my dark moments when I felt very alone, offered a chink of light that someone had had similar worries to me, and if they hadn't been certified then I wouldn't either.  

This week, Wriggles is in temporary childcare; not an ideal situation but a necessary evil as she will only try and eat the printer at work. She has started to cry when I leave and I am told, stand by the stairgate for a while after looking out. It breaks my heart and I smother her with guilty kisses on return. You do care. I'm so sorry I doubted you. I'm not leaving you. I love you. The minute we are home, she scrambles away to explore new worlds and hoot down toilet rolls. Then out of nowhere gives me a big hug or grabs my hand. Then the spell is broken and she is off again, but I am revived.

Oh, to be a parent. You just can't win either way.

Oh No

Oh no. That time has come. The time to roll out and your best "NO" and really mean it. Every time. Continually. Even when you are shattered and just need some peace.

No.

No.

NO.

I'm practising but it appears to fall on deaf ears. Or works for say, two seconds before the culprit tries to resume whatever has attracted the no in the first place. Wriggles is now just shy of 20 months old, 17 months corrected and developmentally anywhere between 12-17 months depending on which consultant or professional is talking to you. 

She is an absolute titch and is commonly mistaken for having just turned one. This isn't a problem itself, the issue with being small is that when we are in group situations, everyone imagines that she is a younger more fragile baby and their hulking toddler is about to shatter her innocent peace. In the vast majority of cases, Wriggles is always the eldest and is just as likely to swipe whatever they are enjoying and not give it back. When all the babies were younger it didn't seem that important. All babies I have met operate under 'the grass is greener on the opposite side'-whatever your friend has is ALWAYS better even if it is exactly the same. Little baffling babies clonking rattles on each others heads and stealing each others socks is quite sweet. I feel though that me and Wriggles have got to the point where I need to enforce sharing a bit more militantly. In the last week she has tried to push another little girl and grab people's clothing to try and move whoever is in her way to what she wants. She is most of the time a very placid, sociable and sweet-natured little thing and it was a bit of a shock to the system to realise that like every other child, she also has a split personality whereby she can be a terror when she wants to. 

I hope I'm not being blind in that I am sure it is just a phase and not the beginnings of a selfish thug emerging. I am very conscious of the fact that she is and is going to be an only child from a single parent family. Both these things conjure up a stereotype of children who can range from precocious to unruly and have a complete lack of discipline. We all know that things are never this black and white and for every badly-mannered child from such a background there is an angelic one and that any child from any background can grow up into a nightmare that even Super Nanny would shrink from. I so want to get it right; she has been such a good baby so far I do not want to spoil things or her, and by default bring up someone who people will nudge and whisper about and hesitate over inviting to birthday parties.

Wriggles has always been quite bold and happy with rough and tumble. She is only now beginning to have a shy side which is normally only reserved for when she is teething and feels a bit rubbish. She is very much her own person and is resilient and knows what she does and doesn't want. Some things, like feeding, I have to tread carefully over and let time take it's course, but I am wary about applying this approach to everything. Over the last few weeks, I have been watching fellow parents with keen interest to see how they handle stressful situations. Obviously I only have insight into this in public and am only privy to what they choose to share, but it is useful to observe different styles. I have always had a make-it-up-as-you-go-along approach and as both Wriggles and I have been happy coasting along, have been lucky in that setting down a few ground rules and routine and otherwise being fairly laid back has not thrown up any problems. She does not always demonstrate a brilliant grasp of understanding, though is beginning to be more clear in this arena and of course by now I am able to second guess an awful lot and know her inside out. As there is just us in the house, I have for better or worse, a 'what's yours is mine' approach which has been good in building up her confidence to explore things and pique her curiosity which has helped development. Now she is a little older though, I think I am going to have to set out some slightly firmer rules about what is and isn't allowed and try and enforce the concept of sharing and patience. Having no prior experience of children, I have no idea if I am barking up the wrong tree too late or too soon.

All parenting tips welcome on a postcard!

Life on the Children's Ward

We have spent a fair amount of time hanging around in hospitals. They are tiring places. When we escape, people often expect us to be serene and well rested. Well, Wriggles might be but I am normally frazzled! Getting back into the swing of life can be a bit of a chore when you just want to curl up on the sofa. Luckily right now we are going through a good patch, after most of April being on the nasty and testing side.

Reasons why being in hospital is wearing:

1. They are normally either quite hot or freakishly cold. Assuming it is the former, then after a few days of smugly marching around in shorts and flipflops, you feel unnaturally sleepy due to oppressing heat and lack of fresh air. You feel permanently dozy and of course the minute you drop off, the doctors will finally start their rounds.

2. Well would YOU like being a zoo exhibit? Even if you are lucky enough to be in a cubicle, there are continually people charging in and out. Many for good reason but this doesn't make the utter lack of privacy any less infuriating. Like the above point, if you dare the lock the bathroom door to get dressed or go to the toilet, you will miss the one meeting of the day you have been waiting for. Just to enhance all zoo-like feelings, the nurses like to point all equipment with reading to face the corridor and nurses station. Although this is useful for them, it does mean that every bugger who so much as saunters past will goggle into your room.

3. Whoever got a good night's sleep a) on a camp bed b) without a proper duvet c) with people banging in and out every few hours to administer drugs and record observations? Who knew so many things could go beep?

4. If your child is connected to a series of beeping equipment, the likelihood is they are quite poorly. That is worrying for you. Even if you know they will be fine, it does not take away from the fact you are anxious, worried, scared and exhausted from all these. You might also be angry with you know, life. These intense feelings are energy sapping. And don't say relax. That is neither helpful nor possible.

5. Recounting medical histories approximately 6532971 times in one admission really addles your brain to the point you are convinced you are wittering gibberish and must have made some of it up. If there are bad memories attached to said histories, it is quite probable you will struggle with confronting these on a daily, often more frequent basis.

6. Lack of nourishing food. I am yet to come across a parent who ever consumed their five a day whilst in hospital, without outside catering and a bottomless wallet. The main food groups for your duration are caffeine (plural), sugar, carbohydrates and whatever looks least congealed from the canteen or food trolley. You also loose track of meal times for yourself and either end up having dinner at 10pm after finally settling a poorly child to sleep and meeting the night shift before being able to briefly sneak out the ward or get to 10pm and fall asleep.

7. While your child naps (if they are able to) or is knocked out by drugs, a popular past time is reading. If you can read the 300 page intellectual book in your bag, you may come from another planet. Often the only reading matter available is out of date gossip magazines or children's books. Neither of these are horrendously problematic but do have a tendency to turn your brain to mush. After the last stay I had, I had re-read two Jacqueline Wilson stories and knew all the names of The Only Way Is Essex cast, which I have never before or after watched. I have not been able to concentrate since on a grown up book as my reading age and attention span has plummeted.

8. It is exhausting trying to cheer up a (justifiably) whining poorly child. They will require your undivided attention and total love. In return for reading and re-reading their favourite book about 400 times in an hour, they may share their virus or vomit down your last clean t-shirt. On rare occasions, they fall asleep on you rather sweetly.

9. Cabin fever is unavoidable. Paediatric wards are not babysitting services. If you would not leave an 18 month in her cot whilst you popped down to the supermarket, you cannot leave them here to go for a walk. Obviously if they are (fast) asleep or you can collar a play nurse, friend, partner, relative or gain permission then you can escape temporarily. Key word: temporarily. However, the over priced coffee shop downstairs never felt so liberating. You do feel like you have mislaid a limb though. The only solution I have found is to hum the Muppet Treasure Island 'Cabin Fever' song to lift spirits:

10. Worried relatives and friends expect constant updates to save them from worry. If you are unlucky, this can spark off unkind words when someone criticises you for leaving it over 12 hours or longer between something happening and you knowing. Managing family politics ontop of everything is not for the faint hearted. Telephone trees are ideal for stressful situations. So is compassion to yourself: right now, focus on the moment. Everything else can wait. Except sometimes it doesn't. If you are struggling, do ask for help. Fighting friends can fall over themselves to keep the small stuff ticking over if it helps. It doesn't make you any less brave to accept kindness.

I am eternally grateful to all medical staff and this is not intended as any form of criticism of the NHS or hospital protocol.