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.

Madness?

I fear I might have gone mad.

I have, out of free will, consented and arranged to spend nearly FIVE HOURS on a packed train with a very loud and fidgety toddler and hundreds of probably tutting and head shaking strangers. I am dreading it and wondering if they will refund my ticket. Or give me ear plugs (me) and sedatives (Wriggles) for the good of the carriage. There are two changes to break things up but really, I am not hoping for miracles. In short, I am panicking and wondering how an earth I am going to manage this with one pair of hands and praying that the current unoccupied seat next to me on the train will remain unoccupied. The rest of the train is booked up.

*panics*

What am I going to DO with her? What if she refuses to nap? What if she tantrums uncontrollably? What if she is sick on the person sat next to me (please don't let anyone sit next to me)? WHAT WAS I THINKING?!

I suspect long distance public transport travel is one of the serious compromises of single parenthood without immediate help to conjure up. Four hands would be excellent. Also it would mean that I knew the person-sat-next-me and that Wriggles would be allowed to climb all over them. It would mean I could juggle a cup of coffee and the toddler without scalding either of us. It would mean I could go to the toilet in peace and without fear of loosing my child or either of us getting soiled in someone else's bodily fluids (come on, we have all been on a train). We could tag team. I'm getting carried away...

We have been on this journey before, but with the big difference that a) Wriggles was 9 months younger, immobile and not nearly so ear-splittingly vocal and b) my dad made the journey up to escort us down to lend an extra pair of hands. Dedication. We have also been driven up and down the country for Wriggles' first christmas when she had just reached her due date and either slept or had a bottle for the entire duration. Now she does not sleep the whole time or have bottles. Oh my goodness.

*panics some more*

I have bought a bumper pack of stickers and am trying to devise some way of sellotaping string to the lids of the felt tips to be sellotapes to errr something else to avoid loosing lids and pens a-plenty. I did think crayons but rememebered many a long distance journey of my childhood with melted crayons wedged down seats and found later in shoes. For the kindness of other passengers I am seriously limiting books as I very much doubt anyone else has the capacity to listen to Where Is Spot? at least 50 times. 

*panics even more*

Wish me luck!

Wires

You got wires, going in
You got wires, coming out of your skin
You got tears, making tracks
I got tears, that are scared of the facts

Running, down corridors through, automatic doors
Got to get to you, got to see this through
I see hope is here, in a plastic box
I've seen christmas lights, reflect in your eyes

You got wires, going in
You got wires, coming out of your skin
There's dry blood, on your wrist
Your dry blood on my fingertip

Running, down corridoors through, automatic doors
Got to get to you, got to see this through
First night of your life, curled up on your own
Looking at you now, you would never know

I see it in your eyes, I see it in your eyes
You'll be alright
I see it in your eyes, I see it in your eyes
You'll be alright

Alright

Running, down corridors through, automatic doors
Got to get to you, got to see this through
I see hope is here, in a plastic box
I've seen christmas lights, reflect in your eyes
down corridors, through automatic doors
Got to get to you, got to see this through
First night of your life, curled up on your own

Looking at you now, you would never know. 

Wires written and performed by Athlete 

Off their album Tourist, released 2005

Written after singer and guitarist Joel Pott's daughter Myla was born prematurely and rushed to NICU.


I wrote this after sorting through things for our local neonatal charity and being quite overwhelmed by the memories it created. If you want a very special message of hope from a hero, hop over to Diary of a Premmy Mum to read Smidge's message to all babies still in an NICU.

Victory

I just wanted to  bore  share a very small victory. It is this hat. It is actually not the hat itself, but the little green label *points* do you see? It says 12-18 months. Which is the size, obviously. At long last my 2 year old is growing! She has always had a ridiculously small head not helped by the plagiocephaly, but finally, she is fitting in bigger hats. Some may question the proof of a fleece-lined chunky knitted cheap-as-chips Tesco hat, but I for one am convinced of this magnificent feat. Now just to move up from clothes sizes of 9-12 months...

Confession

I have a bit of a confession. I think it's a bit shameful; though nothing in the slightest bit gossipy or interesting.

I have a perfectly adequate bedroom and a perfectly adequate bed. It is right next door to Wriggles' room and there is but a wall separating us. Theoretically.

Yet, since about the end of July, I have been choosing to sleep on an airbed on the floor of Wriggles nursery room. 

I moved in as a temporary measure before we ended up in hospital for the millionth time when she was poorly, as she needed monitoring very closely and was awake most of the night crying and coughing. Then, we we abruptly came out of hospital over a fortnight later complete with feeding tube, pump and equipment, it made sense to sleep in with her in case she gagged and was sick mid-night, or the machine started beeping or the feed ended, saving fumbling in the dark, walking into doors or missing any of these cues because I couldn't hear.

I think it's come to the point now, nearly a month after her PEG tube was placed that it is now more for my benefit and comfort than hers. If I was worried about noise, I have a baby monitor, and really my flat is not huge. I know she would be be quite fine if I wasn't there: it's me that might be a wreck. It sends me into a panic, the thought of being apart. Maybe that isn't entirely true: what I am scared of it that something will go wrong and I won't hear. When I am in touching distance of her, there is not a lot I miss. The slightest whimper and I can be there. If she rolls over and gets tangled in her tubing, I can drag myself about a metre to the left and untangle her. Simples.

But what if I didn't hear next door? What if she started labouring breathing? What if she was sick? What if she paused in breathing? What if, what if....so many what ifs. So many what ifs that are unlikely but still there. Because after the last two months, if it isn't a dead cert, then frankly I'm not interested. I don't care for your probablys, your averages, your statistics, your maybes. I want definites and I want to know that I will be in the right place and the right time. I am sick of taking chances and of looking at even minuscule risks. I am done with what feels like playing games with my little girl' health. 

I'm not sure it's healthy, but I'm not sure I can move back yet either.

38/52 Toddler

Beautiful by night...

...until a mid morning strop!

Water Play

This week I have found really hard, what with colds, an unwanted trip to hospital, mention again of fundoplication surgery which I am really not keen on, an increase in physio as Wriggles' muscle tone is playing up and her legs are getting more exaggerated which is not a good thing for inducing mobility and lashings of torrential rain. This afternoon, our friends came round which was a very welcome bit of socialisation with no medical strings attached and really helped to clear the metaphorical clouds looming above my head! Trying to keep on the good track this afternoon, I decided it was high time we tried out Wriggles' birthday present: a water table.

I found choosing presents quite hard for her second birthday; things that would fit in my small flat, things she would enjoy, things that would push her, things that wouldn't drive me off a cliff...things I could afford! She loves messy play and is a complete water baby, and in the absence of swimming while her stoma site heals, playing at the sink is the next best thing. Or better, a table on the floor with less scope to slip over. Also it challenged her legs as it was a perfect incentive to stay standing and bearing (some) weight.

We chucked in all the bath toys, some stacking cups with holes in, a stray ball from a ball pit, a nice pouring cup and filled up the sides. I tried to have one side with strongly scented bubbles and the other plain water with a bit of glitter ("DAAAAARRRRS!") which of course got mixed up in about five seconds flat.

 And then let her loose!

It was really therapeutic playing with the water, but mostly seeing how much fun she was having. My floor got an impromptu thorough wash, which to be honest is probably no bad thing. We poured, splashed, shouted, sang and had a whale of a time. Just what the doctor ordered.

Muuuum, I am NOT doing your washing up for you!

Fairy Wings

Important discovery: toddlers hell bent on destruction are much easier to forgive when wearing new fairy wings. Despite being recently poorly, Wriggles has been firm in her objective to create mess wherever she goes and has been doing a pretty good job.

Emptying the cupboards whilst I am filling up the kettle:

Aim: To quickly empty as many contents of the sideboard as humanely possible in the 10 seconds it takes for Parent to fill up a kettle. Project to be resumed once kettle is boiled and it being poured.

Fairy wing forgiveness rating: 8/10 
Pretty good recovery of temper on maternal side. Fairy wings keep small child from crawling in said cupboard as the shape is too awkward to fit beyond the doors, a definite plus. Score may be skewed by the fact that the cupboard really needs sorting, thus everything is just jammed inside anyway out of sight for visitors, and so is not nearly as irritating as emptying say, the bookshelf.

The Bad Laundry Fairy:

Aim: To "help" empty the washing machine, preferably flinging clean clothes onto the floor, making off with some, and mixing back up with dirty washing. Any spillages must be zoomed in on to drag clean clothes through.

Fairy Wing forgiveness rating: 6/10 
A pleasing result. Fairy wings give the mess a comic edge, although having to wash some washing for the third time in notably annoying. Deduct points for every time infant-in-wings is removed but instantly returns to the scene of the crime.

Stay tuned for more toddler escapades....unless my child is suddenly replaced by an angel sent from mess-free heaven completely immune to tantrums....

Duck

Some days I am like a duck on water, (I was going to say swan but am nowhere near that graceful) on the surface serenely paddling along taking it all in my stride, quacking at appropriate moments, dabbling for leftovers...but on the underneath, frantically paddling to stay afloat and not sink however much I would like to drown in self pity and stick my head under and not come up again for a long long time. Today I am an upside down duck.

There is no particular reason, apart from throwing off a slight cold myself and taking care of a sick child, and carrying on with everything we do everyday in it's tube-feeding, physio-exercises, refluxing glory...oh yes actually, they look some very good particular reasons.

I AM ANGRY. VERY angry. Not at someone or anyone or anything. Just at the sheer bloody unfairness of some things. I know some people believe things happen for a reason. For better or worse, I am not one of the those people. How can suffering in any guise be for good?

Two years ago, my little girl was critically poorly in a plastic box, her little bird like body being pushed to it's physical limits to stay alive. I had held her once.

Two years later, she is lovely beyond belief, full of beans but still needing medical help in different forms to ensure day to day is comfortable and monitored so that things are not getting out of control. Medical science is amazing, I just wish we didn't need it. I am angry that somehow, she came to need it. That she needs tube feeding to protect her lungs, that she needs medicines to stop stomach acid damaging her oesophagus and airways. That she needs exercises to stop her legs, feet and hips from tightening and ceasing or delaying development further. Some days I am so TIRED of accepting and riding the wave of all this vital and gratefully received help and I just wish upon wish things were different.

That she would let herself eat. 

I am her MOTHER. Why can I not feed her in the way we take for granted? 

I want her to experience the delights, the sensory, the social aspects of eating. The pleasurable rituals we play out daily, the tingle, the sharp, the smooth textures, the range of tastes from surprising to comforting. The salivation that comes from it. The pathways our brains make from it. I want her to be able to go for tea with friends. To use food as a means for happiness not just necessity. 

Some days it pains me to keeping trying when she gets so agitated. 

Some days I am very angry that parents have to fight to be taken seriously. It has taken 2 years to finally get doctors to take her reflux seriously and to get to the point where she is 100% tube fed and will be for the foreseeable future. Because otherwise, her already vulnerable chest is at risk. Today I got a review letter confirming that the bronchoscopy, her pharynx is hypotonic (pharyngomalacia: basically "floppy", narrowed and prone to collapsing under strain). This was briefly noted back on PICU when she was intubated at 7 month old! How has it taken until now to get a name? Unsurprisingly, this can lead to feeding problems. Well who would have guessed?!

Mostly I am just furious that things are not straight forward. ALL I WANT IS MY CHILD TO HAVE A PERFECTLY ENJOYABLE UNCOMPLICATED FUTURE. 

Is that too much to ask?