The trouble is, when you actively try and make food not an issue, you do that very thing and it somewhere-subconsciously or just like a giant klaxon-becomes a bloody great issue. Anything who can sit with a child who recurrently refuses all morsels, offered or pilfered, and not be affected by it even a little bit can in my opinion get a knighthood, sainthood and any-other-glowing-hood they wish.
It is EXHAUSTING.
I try, I really try to not let it get to me. After all, Wriggles has a g-tube so she has all nutritional requirements going straight where they need to, but nonetheless feeding is the very cornerstone of life. And I hate that she won't eat. Still. At 27 months, on the cusp of age 2 corrected, she is still yet to contribute to her daily needs of nutrients or calories.
This all sounds very harsh on her. I'm not disappointed in her, more feeling defeated by the situation. Orally aversive children, or recovering orally aversive children are hard work-and I mean that in the nicest of ways. I love my daughter, I think she is the bees knees, but feeding is bloody tiring, physically, mentally and emotionally it is nothing short of demoralising. I wish it wasn't, and however lightly I whip away plates and "never mind, we'll try again tomorrow!" and think of ingenious ways to get her to relax around food, inside a little bit of me is just in pieces. Because something so basic has become such a hill to climb.
We do have good phases where we can make progress. for instance, she will now touch food even when in a bad phase. She will try and steal food off other people and plates, rather than recoil. She can chew some things and move food around in her mouth before swallowing it. Her gag reflex is nowhere near as prominent as before. She will happily play with cutlery, plates, bowls and cups. She enjoys messy play with food (far more than putting it in her mouth!) and we also play with toy food. So definite progress. At the start of this journey, she would not be near food or cutlery, she could barely swallow without gagging and vomiting, she would not tolerate having food placed on her and for a very long time, the only food we had any success with was yogurt. Up and until well after her first birthday, between her childminder and myself, I think we tried every brand of yogurt, fromage frais, mousse and dessert-pots to try and tempt her. Some went in, a lot didn't. When we are going through bad patches, like now, I have to remind myself of how far she has come really. Yes the journey is very long, but we have done not too shabbily so far. When tube feeding was first mentioned I was horrified, but it actually has helped.
It's just, try as I might, I can't stop myself from wishing we were further on. I know, as an adult without problems, there is so much joy to be had from food. It pains me when I see her batting away spoons, hiding from meals, kicking off in a completely uncharacteristic and exaggerated way, crumbling things to the floor, throwing food and spitting things out that do manage to go in. I am proud as punch when she does touch, taste, lick, or eat something even the smallest amount. I just really wish it was more often. Little breakthroughs are like blinding light in a dark world, I am dancing on the ceiling.
One thing I find hard is that it doesn't sit well with me, this wishing some things were different. Rational-me knows I am not trying to swap her; that this is not some trivial issue I am trying to mould her into; that it does not affect my love for her or my overall parenting. I don't resent her, I'm not angry with her. If anything, I get cross with myself. How did it get to this point? I go over and over in my mind the past. What if I had done that differently, or this differently? Did I not try hard enough? Was it because her reflux took so long to be controlled-should I have stamped my feet louder? Is it her prematurity-why didn't I keep her safer for longer? Was it down to the intensive care experience-should I have kept her solely in the house for longer? I know none of these things I can change. I know I'm not perfect, but I did try at every point. Maybe some things I could have done better-hindsight is marvellous and we can all be guilty of looking with rose coloured glasses at the past and judging the future by it.
So for now, g-tube it's you, me and Wriggles. I know now that her behaviour goes in cycles and we will eventually hit a good patch and build things up again. I know too that in time I will hopefully be able to let go both of this idea of "normality" and also at internal guilt. I just bloody can't wait to get somewhere near there. And not see another Quaver ever ever again.