30/52 Spot the Baby

Piedro Boots

Today was our appointment with the Orthotics in the "Gait Lab" to assess if Wriggles needs additional support for walking and if so, what. Our physio had warned us that she was willing to take a hefty bet that she would be needing at least some support, whatever it was, so to be prepared to come away with something. She was not wrong; we have come away with an order for some pink Piedro boots.

"Piedro boots are orthotic shoes designed for children with disabilities and/or children who require extra arch or ankle support . They look similar to a normal boot but open closer to the toes so they are easier to put on children particularly if their toes curl. Piedros help to maintain a good foot position for standing (and walking) and may be tried before other orthotic devices such as AFOs are used."

I was pleasantly surprised that the styles of Piedro boots now are far from clumpy and hideous and "sensible" but are very child-friendly and practically funky. Judging by the chunky catalogue that the orthotics team possessed, they come in styles for every occasion and age range to suit the individual child. In our case, fuchsia nubuck boots.

They will be fitted in a few weeks to help the toe-clenching, ankle wobbling, wonky footedness and help control the variable muscle tone that appears to have lead to all of the above. I'm really glad we have an opportunity to try these boots before moving to anything more hardcore and I'm really really glad to have a supportive and proactive physio and a very competent community paediatrics team in my city who so far have been nothing but helpful and reassuring. Too many parents have to fight for help for their children and would trade in their right arm (and left one. And their leg) for some productive help or to get "in the system" to advantage their offspring. Having been born into the system and never having been straight forward enough to escape it, we are lucky to have always had someone to advocate for us because we've always needed some aspect of help or monitoring. And I really hope I do not sound ungrateful when I say this because I truly am anything but, but this in itself makes me a little bit sad. I love that my daughter is able to get help when she needs it, and I'm really glad that sometimes help can be bright pink and supportive, I just kind of wish we didn't need it in the first place. I will always take what is best for her, but a little bit of me that lives in the world where pre-Wriggles I dreamt of what it would be like to have children, wishes we could be in the Clarks shoes gang everyone else is in.

"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!

My Happy Girl

Today, I had some friends over. This isn't exactly unusual as we often meet friends either out or in, singularly and in groups. Today's friends are those I don't see every week, and the four of us adults lazily amused my adorably smiley little girl who was clearly in her element basking in the attention of quadruple what she is used to. For a bit it made me a bit sad that my family is not the "traditional" idyll it could have been if things had been different. My friends visiting have been on our journey since the beginning, and the two of them that I have known for longest were rocks in the long PICU days, often giving up time to come and sit in the claustrophobic room with my comatose baby on the brink. None of them have children yet, and as much as I love my mum-friends who save my sanity and make days of the week go quicker and more enjoyably, it is also refreshing to be with caring childless friends who don't have the worries, competitiveness or strains of child development, or the lingo that goes with it. Questions or comments were made innocently, curiously and sympathetically.

"Why isn't she walking yet?"

This is a question which normally riles me, brings my defences up and prickles at my soul. Yes, I know she is nearly 2, I know all her peers are walking, I know maybe she "should" be. But actually, today it didn't make me cross or upset. I explained about the prematurity thing and corrected age and that the repetitive illnesses have delayed development on top of any genuine delays. I explained about the muscle tone and that that was why we had multiple input (which I think baffles many people, because Wriggles looks so perfect they can't imagine why she would need it) and that we were still sort of in limbo to see if it was worthy of a diagnosis that may have more long term implications or whether it would sort itself out. That it may prove to be more positional, more muscular, more structural or more neurological or a combination of some or all of the above.


We all looked at the happy squwarker, who was troubling the book box.


It wasn't bothering her.

She didn't care.


Everywhere we go we receive compliments as melts everyones hearts and charms the socks off people. She really is the most lovely little person I could ask for, and I know our family and "urban family" of extended friends all cherish having her, us, in their lives. When you think of a medical problem, or situation, or label, a certain stereotype can spring to mind. Before this whole journey, I'll admit maybe I was biased to. But over the last 22 months, everything I ever thought has been challenged and I've drawn up a whole new set of preconceptions, of expectations and pleasures. Seeing beauty in things and people and celebrating wonderful children who might otherwise have lead very different parts. We've met those with far more severe limitations and those like ourselves who straddle the border between one camp and another. Those who may well have been in for a much-rougher journey but by miracles of fate and luck, have actually bypassed any hardship and unexpectedly followed a very expected pathway. And all of their parents feel the same way about their children as I do about Wriggles. 


It's so easy to become pre-occupied with labels and names, and sometimes they are necessary and very positive. They open doors to help, provide support for everyone and give answers. Sometimes though they can overshadow the person that has been labelled though. The smiling child.


As I explained today, I can't predict where our future will take us. Sometimes I suspect it is one thing, and sometimes I think another. I'm not sure I would be overly surprised either way as to getting answers or not getting answers, especially as our wonderful physiotherapy team have always been very gentle and honest with us. I have to put my faith into a professional which although I can grasp the basics of, have no idea of the more technical or complex aspects. I can put my faith in my little girl: that bit is easy. But strangers? Will they know how special she is, how much she deserves? That is the hard bit. I can take not knowing when things will happen because I trust they will. I just want everyone to see the best in my happy wrigglebottom whether she gets a new "name" or not.

What would you call me?

29/52 Beach Days

Feeding update

Sod's Law dictates that whatever we want within a time frame will of course be denied. Probably to be fulfilled as soon as it is not relevant.

Since our appointment with the dietician and the fact although improving, Wriggles' oral aversion is not disappearing anytime soon, Wriggles has gone from being practically curious about meal times to back to square one: refusal. There I was a month ago, blethering on to lovely Ruth about the amazing progress and how proud I was, to have it all grind to a halt. Although she will consume or at least chew, very small amounts (I'm talking mouthfuls, or pieces the size of my fingernail constituting a "meal") of dry textures like corn and maize snacks or crispbread, these are so low in calories they are in dietary terms counterproductive. I have been frantic in trying to avoid getting a feeding tube but am slowly coming to be at peace with if we end up with one, we end up with one. 

Three weeks of ending up back at square one, encountering all-out refusal of any solids, difficulty feeding milk (our one and only source of calories and nutrition) and being back to all manner of tactics to get out of any feeding has made me feel a broken mama. Against all my wishes and attempts at it being otherwise, feeding in any situation now, including drinking which it never has been, is a battle of stubbornly massive proportions. It was never meant to be like this. I was trying to hard to teach enjoyment and acceptance and the opposite has happened. No 'usual' tricks work, and any former fail-safes have fallen. The progress we made painstakingly had been rapidly backtracked on through a combination of illness, teething, toddlerdom and the horrid beast that is oral aversion. 

Would I be far more patient if I wasn't on a time frame against tube feeding?

Maybe.

Then again, maybe not. I suspect any more patience, any more gaily aborting mealtimes in the face of tears and upset, any more tackling defiance, would only be the work of a saint. And I am not a saint. I, like many others out there, am a humble parent trying to do the best but sometimes that will be called into question.


There are two big things I have been thinking about recently. One, is something a doctor said to be in hospital, and one is a debate which I have read on many feeding blogs and in support and awareness groups.


1. "Is it ever 'right' to use a feeding tube for children?" mused the doctor to his students.

And as he followed up, yes, in many cases. In premature infants before they can suck or swallow and co-ordinate, in sick children who cannot feed, in children who for a vast array of reasons either cannot eat or drink or cannot co-ordinate, those with complex medical needs and those who do not tolerate a variety of feeding. What he was specifically addressing though, was FTT (Failure to Thrive) children. It is a tricky question, and one he admitted he sat on the fence about. Given that food is available, surely a child will not let himself actually starve or dehydrate? Would even the worst feeding disorder be conquered by approaching starvation and malnourishment? And on the other hand, is it more cruel to push a child to those extremities which may prove fruitless? What if by that point, the child's internal sensory and psychological hard wiring was so confused, that the same signals and reflexes did not register? A hard choice and not one to be taken lightly by parents or physicians. 


2. ...which lead on to "is it more cruel in either long or short term to keep pushing food as a primary source, or to rely on an invasive feeding tube to be able to let the child go at his own pace?"

Again, not easy to answer and one that ultimately will differ from each child, each situation, each paediatrician and each family. I have always been of the opinion that feeding tubes are a no-go zone. A last resort. Giving up. And then along came oral aversion, blighting our meal times. We have gone beyond toddler-tactics. Beyond baby book advice. Beyond crafting edible animals and such like out of lunch. Beyond trial and error. Beyond simple solutions. Beyond discipline. We are in a murky territory and more than it pains me to see Wriggles not eat, it pains me to see her unhappy. And sometimes, she is miserable around food. Actually, sometimes? A year ago, I thought I must be doing something wrong. That there must be something to change and it would all suddenly fall into place. It is frustrating, but I now know there is no suddenly. Yes, there are small victories and milestones that feel HUGE, but no sudden snap of the fingers. This is going to take time. More time and more patience that I ever envisaged. I must admit, I have begun to wonder if it is more harmful or hurtful to keep pushing constant feeding on her. When she does feed, it is so slow that it can be easy for one thing to run into the other. The only way to get a decent amount of calories (and nutrients) into her is to ensure she drinks at least 600ml of Paediasure Plus a day. This is no easy task. She struggles with large volumes, can take well over an hour to sink a bottle and becomes bored and upset easily. She still struggles with a strong gag reflex too, which all too often undoes the hard work of the previous hour. Would her quality of life be improved by allowing her more freedom, or would it be hampered with more medical intervention? I am not wholly sure I can answer that right now. Since switching from a peptide to this current milk, I think she has put on weight. I can see one less set of ribs at least. But if so, and if they quite happily drop the feeding tube shebang at the next review, what then? Do we just struggle on in vain? I am beginning to wonder if part of the problem is that the poor mite feels she is in her eyes, constantly being asked to feed, with little satisfying result. It is going to take a lot more than some simple distractions or super-yummy food to turn mealtimes into fun times. More than just trust. Is it fair to ask her to carry on like this? 


A lot of food (haha) for thought for this premmy mum.

13 months old in hospital, when there was a vague plan to place a permenant NG tube that got quashed at the last minute, two hours before discharge!

3 weeks on

So, it has been three weeks since I hung up my work satchel and donned the (even more) food stained cardigan of a full-time SAHM.

Mostly, I love it. But even doing it for about 25 more hours a week than I have been for the last 14 months or so has been testing at times. I'll hands up admit that  have far to go in this mama process: every day is a learning curve. The difference now, as opposed to last year, though is that I can recognise that pretty much all mums of a similar stage feel similarly. Fleeting conversations at baby groups or in the park revealed a set of parents hell-bent on being the Perfect Earth Mother but at times struggling to read their baffling offspring and anxious of Doing It Wrong. Even without prematurity or feeding disorders, I appear to have become in possession of someone who knows her own mind and by goodness is she going to exercise it! At times, it is exhausting but also exhilarating. That is, when it is not really exhausting.

Things I have learnt so far:

1. Get out the house EVERY DAY. Without fail, unless one or both of you is poorly. Even in the rain. Suddenly the scales of trying to combine work-and-motherhood-perfection have been lifted. So many previous days off were spent in the house, alone, eyeballing the baby. No wonder I foundered. Butterfly minded small people need distractions and changes of scenery. Mamas need space.

2. Find a plethora of free and low cost things to diversify things you can go to regularly. This week we have been to the park, the beach, a free science museum with hall of mirrors and small soft play area for under 5s, a parent and toddler group and our usual signing class. We seem to be gingerly finding a routine of doing an activity or outing for one half of the day and being at home for the other.

3. Set a goal time to both be dressed. This sounds really silly especially with a nearly-2 year old, but I have found it helps. Unless we have to be out earlier, our goal is for at least one if not both of us to be dressed by 9am. Invariably, at 9:01am I jump into the shower whilst Numtums distracts Wriggles. It is not the end of the world if we are still in jimjams, and sometimes a lazy morning is just what is needed. Not every day though. Or it will drive me mad.

4. Socialise. Even if you think you want to be a hermit. It doesn't mean you are sidelining your child. My best moments this week have been when in the company of friends. Judging by Wriggles' giggling, I think she would back me up on this point.


5. Try to hang the washing out on the same day you have done it.

6. Ditto the washing up.

7. Even if you are tired, lunch does not = a packet of biscuits. There is a lot to be said for (very vague) meal planning. An area for definite improvement!

8. No one really cares if one or both of you is not wearing matching socks.

9. All mothers will occasionally loose their rag. It does not make you the devil incarnate. Breathe in and count to 10. Glare at toy Rabbit. Glare at small child if necessary-she probably has her back to you terrorising the bookcase again anyway. Stomp off to another room for a few seconds. Having an emergency chocolate tin really helps. Toddlers, it seems, were invented to try the patience of a saint. All this hard work of winding you up will be undone in an instant once they reach out sticky hands to loop round your neck.

10. Ignore all nosey bats. One mile in each others shoes and all that.

Boxes

After being admonished for my messy flat this week, I have tried to be a little more organised.

I will admit, being a mother does not always come naturally to me, especially when my buttons are pushed and I have to juggle a million proverbial balls in the air, but what does come naturally to me is a double-sided-sticky-tape-Blue Peter-ethos.

So here is some I made earlier:

1. Take some empty boxes (I used Pampers nappy boxes; any will do to house your junk)

2. Find jolly wrapping paper, wallpaper offcuts, old maps or similar

3. Locate double sided sticky tape. The decorating stuff from DIY shops is a million times cheaper than the fancy-pants type from art and stationary shops.

4. Cover box is sticky tape

5. Stick on jolly paper

6. Fill with junk that is currently on the carpet

7. Make nosey old bats who look through your window both amazed, and jealous

Coping

I must admit today I was a little taken aback today.

I was speaking to a woman about a genuine housing issue, which we agreed on and then she came out with:

"You know, every time I come and look through your window it looks really messy and you seem very chaotic. Are you coping?"

I felt instantly hot.

And a bit like my mum had caught me doing something I shouldn't have.

Then I felt cross.

Is it not bad manners to go deliberately looking though people's windows when it is otherwise avoided?

Was she actually trying to help or was she being a nosey bat? Previous experiences with her and other residents experiences with her very much point to the latter. However innocent until proved guilty. Maybe.

"Is your Health Visitor helping?"

I gabbled some things and bade a quick goodbye, shutting my front door and smarting. I didn't need to look: I knew my front room was a mess. I have always been messy and struggled to stay on top of tidying up. Recently has been extra hard, as I have just felt my bones so heavy with exhuastion that it makes me feel a little ill. I'm really not deliberately slovenly but maybe I could try a bit harder. The trouble is, in the daytime as soon as I put something away, Wriggles will empty an entire box, and at night, all I can do is collapse. The one time I did try to have a proper evening blitz, Mrs Downstairs complained about the noise. Am I just making excuses for what has got out of control?

Ultimately, I know that I will tidy it spick and span by hook or by crook, whether by putting Wriggles in a high sided box or by irritating Mrs Downstairs. I will because it really is a mess. At the moment, the Wriggles friendly bits are not too bad (excepting all toys she has strewn about and untides as i go tidying) but even I won't let it get to the state where it is hazardous for her. But 'my' bits, are a little shameful. So naturally I am here writing about it rather than tidying. I do care. Sort of. But also, quite a lot of me doesn't.

Am I coping? Yes, I would say I am. Coping. That is all. I wouldn't say I am doing much more because clearly, I have things to get on top of before I can rise to the next level of whatever comes after coping. I know that I am not not-coping because not-coping is horrendous. Not-coping means not even noticing mess or not caring about anything. Not-coping means barely being able to move. Not-coping means not speaking to anyone but Wriggles or barely leaving the house. Not-coping means panic attacks and horrible thoughts coming thick and fast. So I am coping. I am able to keep not-coping at bay and get through the day. There is a start, a middle and a finish. Not-coping eclipses all time. My coping might look like someone else's not-coping, but I know for me, that is enough. After a much better time recently, I know I have taken a bit of a stumble suddenly again. But I know also I will pick myself up sooner or later. And that is coping: knowing there is not just a tomorrow but a day after that too.

When people, other than very geuine people close to you who would help in an instant, ask the dreaded "are you coping?" question, I find it a little irritating. Mainly, because exactly what are they going to do if you say no, no I'm not?

Would they for instance, find me a partner?

Would they pay for a cleaner?

Would they give me an extra pair of hands?

Would they find me more hours in the day?

Would they be able to answer the eternal question, of why toddlers empty things?

Would they iron all my fears out straight?

Would they remove my scars of bad memories that don't go away?

Would they teach my daughter to eat?

Would they wave a magic wand?

Would they take some of my tasks off me so I had a little less?

Would they give me just half an hour to help?

No, they would not.

They would look a little bit uneasy, like my Health Visitor, and maybe pat my hand. And then they would go and think thank goodness it's not me.

So I'll just keep on coping until I'm better than just coping. And in the meantime, I might even finish the washing up.

Hanging Out

Today, I am guesting over with the wonderful Kylie at Not Even A Bag Of Sugar This week has been full of some brilliant guests posts by Leanna of Diary of a Premmy Mum, Kerry of And Then All I Thought About Was You and Scrapbookerry and K of Mummy Pink Wellies. So go read them all and keep your eyes peeled for the rest of the week!

Blowing the cobwebs away

What a difference a day makes after yesterday! Today when I woke up, the sun was shining, the air was warm and Wriggles was banging the wall the get me to shake off my sleepy head. After a great deal of dithering, I decided to seize the day and go to my favourite haunt, the coast. It is my single favourite thing about Newcastle: the proximity to the sea.

So on the metro we hopped, and within half an hour we could taste the salt in the air, hear the seagulls screeching overhead and glimpse the blue horizon. After quickly stopping to buy a bucket and spade and go on the swings, we found a spot on Whitley Bay. I wasn't too sure how Wriggles would react to the beach, having only fleetingly been on one. She was cautious at first but very quickly indeed got stuck in.

We built sandcastles (and knocked them down again)

 We explored rock pools, including sitting in them.

We crawled up...

... and down the beach. 

 We practised taking some steps when being held onto very tightly (and were ever so proud).

And we paddled in the North Sea. Wriggles adored it and wanted to crawl into the oncoming tide.I did put my foot down there and we settled for jumping over the little waves.

 I think it did us both good to be out the house, somewhere new and having lots of fun. There was s much to explore, so much freedom and not a single plug socket to be told off for soliciting with. Our friend who lives by the sea came down to spend some happy hours with us and let Wriggles climb all the way up her and use her back as a drum. It's amazing what you can get away with as a baby. I love being a single parent, but nothing beats some good company to share exciting firsts and moments with, and I returned home with a spring in my step feeling revitalised to carry on the week.

Come on jetstream! Move quickly so all my days can be spent with sand in my sandwiches.

Music

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

Then I had Wriggles and slightly lost the plot.

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

So I stopped listening so much.

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

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

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

Incy wincy spider climbed up the water spout...

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

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

An old favourite: Malcolm Middleton, Week Off

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.

Understanding

Recently, I have been thinking a lot about speech and understanding. 

Wriggles is not yet speaking, but quite a few of her contemporaries have begun to say first words (but they are not nearly as pretty or funny or clever...) and learn counting, names and commands. I am not really worried about the absence of speech, and neither is the speech and language therapist which is a good sign to me. The pair of us get by with a very one-sided conversation and generally by intuition, guess work and knowing her inside out, I can just about grasp what it is Wriggles is going on about as she sits there going "mmmmmaaaammmmmnnaaanannanamamammamggh" or words to such effect.

Signing has really made a difference recently. We started going to baby signing (derived from British Sign Language but with similarities to Makaton in that there is a lot of emphasis on speech accompanying the sign as it is to aide spoken language, not substitute) at 1 year old (9 months corrected) and finally at 18 months old, Wriggles signed "all gone" in context.

That was it for quite a while.

Around her, the other younger babies steamed ahead ticking off 5 signs, 10 signs, extra signs....

"All gone!"

And then suddenly out of nowhere we have had a burst of signs. It helps if you are really really observant and have a good knowledge of what the signs are to look out for. For instance, Wriggles' sign for spider, train and fish are all remarkably similar. Star is only differentiated from milk by how many hands are being used. Teddy, hug and baby are all given the same sign by Wriggles that is actually the 'real' BSL for change. I know exactly what she is going on about, but many may be mystified! She does know and can do the signs for most animals, but if she is tired then everything is divided into two categories: cat (small ears) or rabbit (big ears) which she often does one handed. All gone covers a range of phrases from all gone to go away, had enough, finished, shut, closed, don't want it, scared, upset, hiding and don't you dare come near me with that stethoscope. She knows the actions and orders to quite a few songs and will wiggle on command ("dance") as well as blow kisses, mimes tickling, claps herself and mime "Oh no!" and "yummy." She often babbles "mamammmamamamama" which is applied to everything in sight and everything not in sight, but has begun to touch the side of her head when I come into view which I am hoping is her approximation for "mummy" via signing, as the taught sign from class is three fingers in manner of a scout salute. It makes mealtimes a little more straightforward as rather than guessing solids/milk, Wriggles can now sign milk at me when wants it and when she is not up for it, which formerly had a higher incidence of gagging before she could sign.

She knows when she has been cheeky or clever and though doesn't always show much reaction to words, has a very strong visual memory as when we see something familiar, her little hands start clenching in excitement, or she hides behind my armpit depending on what it is. We read books an awful lot, and she knows the order of favourite books and has pictures which stick in the memory she will return to.


So there is clearly a decent enough level of understanding.

There are three things I am mulling over trying to enforce an understanding of or whether to leave it. She is now 19 months corrected and 22 months actual. The last I heard of it, she has been classified as 'globally delayed' although I am convinced her cognitive, social and problem solving skills are pretty much on track for corrected age at least and her fine motor skills are catching up quick. I'm not too concerned about speech as there is understanding present and some communication via signing, which leaves gross motor as the "problem" area. Sometimes, she seems quite young and sometimes far older and wiser. Anyway, what I have been wondering about is:


1. Her Story


How soon do you start explaining prematurity? Obviously in incredibly simplistic terms; 'small/poorly/early' seems a good beginning. She has seen pictures of herself since virtually birth but has never been interested enough to sit still for 2 seconds to see who the pictures are of. She is more interested though in the "term" pictures than neonatal ones. It is down to prematurity as to why to are in hospital such a lot and regularly see doctors and nurses. This is Wriggles' "normal", as she knows nothing different and does not yet have a sense of being any different to those she sees regularly. Not-yet-2 seems very young to grasp a history how you got here, but we know other little people either with or those expecting siblings, that grasp a vague concept of babies and others that know about caring for baby dolls and such similar emotive role playing.


2. The Entourage


Which leads us to the medical professionals. The person we see most is our physio lovely Gemma. Wriggles definitely recognises her and although she won't let her touch her feet, she will happily go to her. I often wonder, does she think she is a funny friend or does she know she is different? I have tried to vaguely explain Gemma comes to do exercises to help her legs so she can feel better but don't get a flicker of recognition or interest. Partly, breaking down the collection of professionals relies on recognising body parts, ailments and time frames. We are getting there on body parts (at least for nose, tummy and the other day, knees) but it has taken a long time for her to be aware of many limbs far less have names or uses for them. The only reason I have been wondering recently about being clearer about separating these people is that she is becoming increasingly aware by the name and quite clear about reactions to places, and I think sometimes it must be very bewildering to just be taken somewhere which either may be nice or may be upsetting or may be tiring. It might be for a short time (e.g. doctors) or might be overnight or longer (e.g. hospital!) but equally the same place (hospital) might be for a check-up or a social visit (e.g. NICU support group and an opportunity to butter up the nurses who remember her as a very fragile scrap). We've read books like Miffy Goes to Hospital and at least pointed at pictures and named key things, but judging by the lack of reaction, linking a connection between story and real life is too advanced. Although some books do elicit connections being made, relating to perhaps routine.


3. Feeding Hell


This is the biggie and the one that is closest to my heart, divides my brain most and is most pressing.
Given our recent ultimatum,time is of the essence and feeding either fluids or solids is really now very important to produce results and also maintain enjoyment and acceptance.
Do I carry on as normal, and then if there are negative consequences (feeding tube implemented or some hospital stays specifically for observing feeding patterns) have to then quickly find a way of describing it in ways a very little person can grasp?
Or do I try to introduce the subject without sounding too terrifying or like a threat? I don't want to scare the poor mite, but it is very unfortunate that at present she is being incredibly fussy about even the few things she would accept orally at a time when I really need her to be more open in order for us to stay off the dietician's radar as much as possible.
"Eat some yoghurt or someone'll put a tube down your nose" does not exactly conjure up a jolly mealtime to look forward to.


Visually presented, she does have a concept of what an NG tube is. I know this because in April when she was poorly and ended up on a drip in the end, when they tried to insert an NG tube, merry hell broke loose before they got within two feet of her with it and she was clearly absolutely terrified. 
I really really really REALLY do not want that to be a regular occurrence.
Obviously I am hoping it won't be.
But I do have to face up that either NG or PEG feeding may be a reality in the short term. She is a not a little baby anymore. She is aware of surroundings, has some sense of things to happen and has very clear triggers, visual stimulus and a surprisingly clear memory. 
When she was poorly very recently, I did try to reason with her (I say reason; I was literally sobbing in desperation trying to persuade her to at least part her lips to take just a 5ml syringe of water, hydration fluids, milk, juice, Calpol...anything) when she was becoming very dehydrated through refusal to take anything orally and the nurse was warning us that an NG tube was very much on the horizon as soon as the shifts changed over if progress had not been made. Maybe she took pity on me, maybe she just changed her mind, maybe she understood-but at 10pm that night, she finally took some fluids for the first time in 24 hours.
Now that was an extreme situation. We were both displaced, tense, she was very ill and I was very upset. Crying at teatime is not an everyday occurrence and it is not going to become one. I don't want to sound like I am regularly making threats, but should I refer to the prospect of tube feeding in the future? Or should I just leave things relaxed and then think on my feet if it comes to that?



Who would be a parent, eh?!

28/52

Happy

This evening, I was baking cakes (it has to be plural as my success rate in the baking department is highly variable. Tonight it was mercifully two out of three), jiggling around wearing an apron to some favourite music and realised that I was feeling something I perhaps hadn't felt massively for a while when on my own:

Happy. 

Content. 

Not sad. 

Not scared. 

Not anxious.

Not regretful. 

Not guilty. 

Not remorseful.

Just pleasantly chilled and covered in flour.

When I am with my little girl, I am generally fine. It is when she goes to bed, that the thoughts come tumbling out one by one ambushing me until I feel like keeling over with the weight of it all. Everything becomes mammoth, everything becomes my fault. My strength drains away and I have no will. But tonight, I feel light. Light and fluffy and hopefully the cakes in the oven!

Some good moments from our week:

Hedgehog comes for a day out

Definitely NOT afraid of the big bad (stuffed) wolf

"Helping" sorting out for the Tiny Lives sale fundraiser for our NICU

Sometimes

Always, always, always I am proud of Wriggles.

Proud of what she has achieved.

Proud of what she will achieve.

Proud of how far she has come.

Proud of what a delight she is (tantrums excluded) and how she charms the pants off anyone and puts a smile on the face of strangers.

But sometimes, although I am proud I am also sad.

Not disappointed, but sad. There is a huge difference between the two.

Sometimes I look at other children, and whilst I do not compare, I do notice. Notice that those younger are taking steps, forming forms, wobbling around whilst my older girl crawls around blissfully. And sometimes I feel angry or upset or frustrated that anyone should have a complicated journey, that any innocent child should have to be on a different path, that any family should have a challenging journey.

It's character building, they said. Challenges make us stronger and us who we are. 

Sometimes I believe it and sometimes I think it is bollocks.

Sometimes I want to know what the future holds and sometimes I am scared. Sometimes I am furious at the universe for giving my beautiful girl such a mixed bag when other (less nice, obviously) children get such an easy ride. To them, the terms I know and hear and think about every day are either those of ignorance or simply intellectual. To me, they are part of my child.

Sometimes I wonder if I had done anything any differently if we would have had the complications we did and still live with.

Sometimes I wish I could just take Wriggles had and run off into the sunset, away from doctors, from clinic, from observations, from reports, and just be the two of us alone.

Rain rain go away

I cannot begin to tell you how fed up I am with this rain. Except that if you live in the UK too, chances are you share my feelings and are busy with the same sentiment. The trouble I have is a simple equation:

Heavy rain + cooped up toddler = Not Very Good

Toddlers, need entertaining. Toddlers like variety. Toddlers like destruction and space to roam. Mummies do not like getting wet. Thus, being stuck inside the house is a nightmare that will often result in two people climbing the walls by 4:45pm. After a while, you run out of producing tricks, your voice goes hoarse from singing Wind the Bobbin Up a little too enthusiastically at first not anticipating how many times it would have to be repeated, there is nothing actually left in a drawer or cupboard, all the crayons have gone missed (lobbed God knows where) and every new and exciting (really!!) activity is met me snarls of defiance and lunging for the remote/telephone/bread knife/plug sockets/bin.

"Helping" address a card

Bookworm at home ravaging the shelves

In good weather, I have tricks up my sleeve. Namely ducks, pigs, the seaside, the playground, picnics outside, drawing on the path with chalk...I know, I do have ENORMOUS sleeves. In torrential floods, I must admit I am stumped. There is only so many times you can haunt soft play before you either go bankrupt or mad, and the great problem is getting anywhere in lashing monsoons. Yesterday we braved it and dashed out to toddler group which is all of five minutes walk away. Today, after miserably watching the drizzle we seized the moment and decided to go and bother the quiet literary types at the City Library. Luckily everyone else had the same idea and there wasn't a single literary type in sight. Instead there were some small children full of beans, what looked suspiciously like a great thong of the Unwashed talking earnestly about dragons and dungeons and taking up all the tables with their special tablecloths and lanky anaemic looking limbs, and several elderly ladies asking about Fifty Shades of Grey.

Our City Library is now huge. It has six floors including a nursery and creche, exhibition space, gigantic paper mache tiger, permanently shut job seekers advice (how fitting in this climate!) and a severe lack of books. It is very clean and modern, but does bear a minor resemblance more to a shopping centre or empty airport lounge as opposed to a centre of learning. Luckily it does contain children's books and a small area to amuse said small children. There is a rather exciting pretend tree and a huge print covering both a wall and curtains of clouds in the sky, so you can pretend you are outdoors. A bonus for us today, was there were some wide steps leading up to this. At the weekend, my friend decided her honorary aunt duty was to teach Wriggles how to climb up stairs. In just under an hour, Wriggles went from clumsily scrambling over legs to being able to shimmy up a lengthy and steep flight of stairs without a second glance. So being able to practise this new skill was a winner as far as she was concerned!

Mastering the stairs

Wriggles by name, Wriggles by nature

 As it was in the same building, we were able to call by the nursery Wriggles had temporarily been in whilst I finished work after our poor childminder had had to bring her retirement forward drastically. Due to our recent hospital admission, Wriggles had missed her last day so it was a lovely opportunity to say thank you and pick up anything she had left. Although she hadn't been there long, she had been assigned a key worker and had a folder full of 'drawings', observations, photographs of what she had been up to and descriptions of how her days there were filled. It is not just a lovely record to keep, but was also somewhat of a relief reading through the notes especially those in reference to the EYFS framework and child development. Although we know she has delays, and has been officially marked down now as globally delayed, the observations were glowing with her skills and it was clear that those partaking in her care were every bit as chuffed as I was every time she did something new. She may seem young for her age, but she is very much getting there and it was with both pride and pleasure that I noticed she is ticking many of the boxes for 8-20 month old development in social, cognitive, personal care, language and gross/fine motor skills. The speech and walking may be missing, but she is quite adept at communicating her needs, charming the pants off making relationships on her own terms and getting around to her wishes. I knew at home she was beginning to grasp the concept that things have uses but this made me laugh:

"....Wriggles was exploring the (toy!) mop, turning it upside down. Earlier in the day, she found the sweeping brush and proceeded to attempt to try and manipulate it to 'clean' the floor and also then to brush her hair."

I must admit, the idea of my Wriggles, who if she didn't look less baby-like by the day could easily pass for 10-11 month old, wrestling with a full-sized sweeping brush and attempting to comb her hair with it made me snort out loud. 

That aside though, the report was full of positivity and it will certainly be accompanying us to our next development review. It backs up what I have always thought and said, in many areas she is going at full steam ahead and what some areas may lack in, others such as social skills and confidence, she more than makes up in. One horrible review now months ago, it was implied that by being from a single parent background, she wouldn't be able to be brought on as much as a child from a more traditional background. I was told that unless she went quite substantially to nursery among lots of children, she would flounder. Yes, these recent observations have been made in a nursery setting now (albeit a very small indeed one), but she has clearly managed perfectly well to get this far with so much character by either being with me, or the childminder who only had one other little person one day a week. There might only be two of us, but since that stinging remark I have been determined to make sure we socialise and go to lots of activities in groups and see lots of friends to widen her circle. And it looks like it is working! She is not even 2 yet, so even on a purely hypothetical level as finances would not allow any nursery, I am not comfortable with having her away from me unnecessarily. She is a bright button and unless we become hermits, I refuse to believe her development will be harmed in any way by not rigidly following guidelines in a large group of peers.

Now if that rain can just stop for one minute to be able to get out and socialise....