It seems so impossible to want something gone for so long and then when it actually might be truly going suddenly feeling so incredibly sad about it. 
Oliver is 18 months old and has been fed by nasogastric tube for his entire life. Tomorrow we take it out, as part of our attempt to wean him from the tube. He’s not drinking milk, he’s not eating much, but the idea is that he will become so incredibly hungry that he will start to eat and drink. It’s a form of torture really. But it’s the way that science tells us is most effective. 

I primed the new feed line tonight for the last time. I opened the purple pack and threw out the pieces we don’t use and I screwed it into the bottle and primed the line with milk. 

And I cried. 

I don’t want to have to prime a line to feed my child but it’s all I know. 

I cried because we are going into the unknown, a place of fear and hunger and dehydration. I cried because I’m a woman of routine and this is what I do every single night, how do I make a new routine? I cried because I was sad, because although it wasn’t what I wanted, it has become our normal, our way, and I will miss it.

And I cried because I feel like I’m taking part of my son away from him. 

He is chatty and he smiles all the time, he’s not a big crier and he’s in love with cars and oven doors and balls, and he’s a tubie. It’s part of him. The tube, the tape, the pump and line, the adapters and syringes; they are Oliver. 

His face is a blocked nostril and some duoderm and hypafix, a bridge, a loop and an anchor. I’ve never spent more than an hour looking at both of his empty cheeks in the last year. 

I don’t even know what he truly looks like. 

He crawls along and throws the tube over his shoulder when it dangles in the way. He nibbles the end sometimes and he swings the feed line against the side of his cot when he wakes up in the morning. He lies still while we change his tape and he lets us because it’s just part of his day. 

It shouldn’t be part of his identity but it is. And we are taking it away. 

In the dark of the night I can make him hate me for this, even though I know that’s ridiculous. But I can imagine him wondering why his cheek feels cold, and struggling to fall asleep because his tummy isn’t being filled up with milk while we rock. I can see him become more tired and dehydrated as the time since his last tube feed goes by, see him wonder why he feels so funny in his tummy and why things aren’t happening the way they used to. 

And I hope he will forgive us for the misery and discomfort we are putting him through. I hope he can understand in a years time when he’s eating macaroni cheese that we challenged him and were hard on him and his body so that he could enjoy his dinner without having to hook up to a pump and sit still while his tummy fills. 

And who knows, maybe we will only get a day to look at those little cheeks, but maybe we will get a lifetime. So tonight I’m trying to commit to memory who Oliver is as a tubie, and to enjoy the last few feeds that I hated for so long, because they are part of our history and they deserve to be remembered. They tell a story of how hard we worked to help him grow so that he could be brave and strong and here. 

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Author: rfclews

I'm just another mum trying to figure all of this out, with the added bonus of getting to start extra early, and well and truly on the back foot!

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