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!

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.

A Day of Two Halves

If ever there was a day of getting out on the wrong side of bed, today was it. I only have one side of bed, but obviously today it was Wrong. 


I had a rare lie-in until 08:20 (thanks Wriggles!) but awoke in grouch-mode and it got worse and worse. I intended to get ready early and go out before 10 to take Wriggles to soft play before lunch in the hope of tiring her out a bit so she might re-take up napping in the daytime and thus start sleeping a bit more normally at night times. Partly due to the rain and mostly due to my ineptitude, we weren't both ready until gone 11. Wriggles was driving me up the wall, only content to throw everything off my bookshelf constantly ad shriek at me if I dared correct her from reading books upside down (not a deliberate attempt to spoil fun: she can and has for months read them the 'right' way and now her upside-down-and-back-to-front method is very rough, breaks the spine of all the books and thus makes the pages likely to fall out. She has developed superhuman strength and can easily destroy a board book) or suggest that she could do something, anything, other than book flinging either with or without me. I discovered I had missed a series of payments on things so had to do some organising and grovelling which is never nice, and finally wrapped up a parcel to post to a dear friend who is having a baby shower this weekend, which I cannot afford to go to (WHY do airlines charge practically an adult fare for infants who will after all, only be sat on your lap with no luggage?). There wasn't a proper reason for getting cross, especially with Wriggles who after all was only being a toddler, but I found myself getting increasingly wound up and stressed with everything. The washing up pile haunted me, reminding me that I was rubbish at doing things when I knew I should and I felt tired and a bit overwhelmed by just life.

By the time we left, it was pouring down but I could not stand to stay inside. I know from prior experience, being couped up with a full of beans Wriggles in destroy mode is not a recipe for a happy day. We had a nice hour where we go some jobs done, called in on our recently retired childminder who was delighted to see the Wriggly one and had some lunch . Then the trouble brewed again as I tried to persuade the baggy-eyed and yawning child to have a nap. Just five minutes (or preferably twenty if you're asking). She looked sleepy. She has until very recently, had a hour or longer nap after lunch to recharge her batteries. This has suddenly turned into a battle meaning by 5pm she is a whining and exhausted child and bedtime is frankly a miracle when it eventually occurs. We walked around the park. We walked around the park again. We had some top-up milk. We walked around the park some more. In the rain. An hour later, with a very frayed temper I gave up. 

It is very rare I am grumpy with Wriggles or tell her off seriously. I do employ "No!" at appropriate moments ("NO Wriggles do not turn the TV on or off/grab plug sockets/climb onto the toilet/throw your dinner on the floor") but partly I've never really had cause to tell her off and partly I'm terrible at it as I instantly feel terrible. I'm not talking about dodging discipline, but shouting for the sake of a bad or frazzled mood over something that doesn't warrant that level of reprimand. I know it was wrong to snap at her, but snap I did. What with working and managing everything on my own from baby things to finances to the sodding washing up (where, where does it come from!) when it gets to the end of the week, a hard week of sleep regression, a frustrating previous day at work, then to be honest I need Wriggles' nap as much as she does. Just to get fifteen minutes or so to me. Just to sit down without guilt and breathe a sigh of relief. Just to know that the whining will almost-probably be cut out later. Just to have a cup of coffee that is still hot. Just to stop being two parents rolled into one with eyes in the back of my head and enough patience to shame a saint, for a tiny tiny fraction of time. I was cross and I told her off. I'm not proud of it. At all. But it was that or burst into tears. Needless to say, it did nothing. With defeat and now over an hour lost, I gave up and chalked it up to my list of failings and headed into soft play. As I paid the entrance fee, I knew full well that she wouldn't last the two hours it gives you but by now we both needed somewhere neutral and shrieking friendly.


And actually it did the trick. I chilled out and relaxed especially as Wriggles clambered over me. Seeing her cackling away to herself trying to climb the wrong way up the slide reminded me why I love her completely. I helped her perfect her clambering skill, which I suspect I may regret. It was rather hot in there, and as time passed Wriggles began to concern me slightly. She was getting very sweaty and clammy; I removed her t-shirt and clipped her face back. She was still very hot. In horror, I watched a bright rash spread across her arms and chest. It was very red and very spotty. Whether fever or heat rash it was hard to tell. Gradually it faded as I tried to cool her down and my bed time it is as if it had never been there. It is horrible moment though when your heart leaps into your mouth and panic is suddenly everywhere! We came home without even and had a cuddle that put the world, or at least mine, to right.


This week has been a little ray of bliss in terms of Wriggles' feeding. We have tried:

• Mummy's sandwich
• Mummy's cake
• Strips of pitta bread
• Wafers
• A bit of buttered roll 
• A vegetarian sausage 

...which have all gone down relatively well. I'm not talking huge amounts, but just tasting and Wriggles voluntarily putting them in her mouth is such an enormous step. I decided to bite the home cooking bullet today and make some sweet potato chips. To my amazement, as I deposited some on the highchair, Wriggles abandoned the strips of toast she was dribbling on and took one. And put it in her mouth. This was a beautiful moment; it was the first thing I have made she has touched*. Obviously I am delighted she now will try toast and sausages, but was giving up hope of ever being able to nourish her myself! Alright, I know it was just a bit of essentially fried potato. I imagine I could have possibly obtained some from the frozen aisle as the supermarket. But I cooked it. 

It dawned on me that I am enjoying food times with Wriggles. For the last 14 months I have been very much trying to enjoy food times zen to a fine art, but enjoy it? No way. Would you enjoy your offerings refused for months and months? Every day, several times a day no matter what you do with it? Would you enjoy seeing your child make herself sick with distress because she caught sight of a spoon....no not her spoon, your spoon you intend to eat your yoghurt with? Would you enjoy finally revelling in her trust that fromage frais is actually yummy only to see her stomach contents cover the entire kitchen because of one little gag? No, thought not. Live with, yes. Accept, yes. Chill out about, very almost yes. Enjoy? No. But now, now Wriggles is trusting food enough to at least make sensory discovery and her own mind up and at best actually use her oral skills and digest it, now there is variety and her enthusiasm matches my own, now it is fun. Now if she just put on a little bit of weight so I couldn't play the xylophone on her ribs...!

Getting a bit cocky with the "climbing" malarky...

Frustration

Generally, I have made my peace with oral aversion and it's place in our lives. I have accepted that we are in for the long haul and that one day some years down the line, I will look back with relief and wonder how myself and Wriggles kept our sanity in tact. I understand that there is no magic cure or divine intervention, no magical point where suddenly it is gone. And then, there are the increasingly rare days like today where I want to wail and stamp my feet and scream that it's not fair and got and hide in a huff. I hate feeling cross with something I have no control over and something I don't want to show Wriggles that it affects me, lest I make it worse. I save my frustration for nap times and bed times and cross walks home, where I can breathe and seethe. I'm not annoyed at my daughter, I'm annoyed at the universe and that some people will have to struggle while others don't. I hate that I get annoyed and snappy with people I care about who try and make helpful suggestions, that have long been tried. Very few people understand that it's not that we haven't hit on the perfect way of eating or the perfect food, but that the problem is the entire process itself. It is part behavioural, part sensory and part psychological; and all in an essentially very young child who is not equipped to deal with reason.

"Normal"

Yesterday morning I was idly listening to the...gulp...Archers omnibus, whilst chasing a newly crawling Wriggles around when I heard the storyline about a heart attack. Bloody Archers, first they have the premature baby storyline (reduced me to hysterical tears over the dinner table at Christmas just weeks after Wriggles reached 'term') and now one about hearts! A lump rose to my throat and I was transported back to the Intensive Care waiting rooms of my father and beautiful daughter within seconds, scared and tired in an empty clinical world.

I also fittingly read a discussion on "normality" after trauma and if you ever return to your former state or feel like you fit back in with the world. Can you, and are you, 'normal' again?

Living with Oral Aversion

Oral aversion is hard. Really hard. It strips away one of the most natural things a parent does for and subsequently teaches their child: to eat.

Oral aversion is defined as "reluctance or refusal to eat". It can arise from a number of sources, and often from more than one. It responds well to therapy but does so at snails pace. The reluctance or refusal is not a generic toddler phase of bad manners or defiance; it is linked with oral trauma and thus is an intense experience for the child that literally stops them from eating, swallowing, trying things or allowing textures nearby the face. It must be very frustrating if your child only eats Quavers, cucumber sandwiches and Kit Kats but that is not quite oral aversion.

This post by Life with Jack sums up perfectly much of how I feel about it. Having not yet encountered someone face to face with this problem, the internet has been a lifeline of information and hope for the future. It has given me reasssurance and I have "spoken" virtually to other parents who have been there, done that and got the sodding t-shirt. This has meant a lot, as it is one of those issues that is hard for some people to truly understand and therefore can be quite isolating. It is easy to say airily "Oh they'll get there in the end" but when your child is only on fluids or is reliant on tube feeding whilst around you others are scoffing three meals a day of a variety of textures and tastes, it can feel like another world. And the reality is that it is not going to change fast or go away over night. It is not solved by intense hunger or withholding "safe" or favoured items.