Thursday, September 20


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?

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