Most of the time I look at F and I think that you’d never know he’d ever struggled. You’d never know that there was a time when he spent whole days just screaming in pain. You’d never know that his weight had ever started to nosedive down the centiles. You’d never know that he had to sleep in a swaddling bag for the first year of his life just to feel comforted.
But every now and again, I see glimpses of the things that reflux has left behind.
F has a sensitive gag reflex. So sensitive that he gags on most foods apart from yoghurt. Sometimes he still throws up, especially if he isn’t keen on the taste of the food to begin with.
He also still seeks out the comfort of that swaddling bag sometimes by pulling his arms into his sleepsack, particularly when he’s not feeling well.
F is clearly thriving and, despite a very slight developmental delay caused by his reflux, most of the time he eats well. But mealtimes are when his past battles show their most obvious scars. Most of his meals are still puréed at 21 months old. He will eat finger foods – breadsticks, fruit, rice cakes – quite happily, but offer him baked beans or scrambled egg and he will try it, gag on it and refuse to have anything further to do with it. It means that I am often the subject of judgemental stares and scathing stage whispers when I take my children out for a meal. I’ve learnt to block it out for the most part, but sometimes one of those comments still gets through. Sometimes I still feel those stares.
“Why is he still eating baby food? He must be almost two?”
“Why is she still trying to get her kid to eat? He’s crying. He’s obviously not hungry.”
“How come the other kid is eating normally?”
There are days when I wish the ground would just swallow me up during these outings. But there are other days when I want to get up, walk over to these people and ask them why the fuck they think they have a right to judge my parenting when they don’t know a damned thing about my child.
Here’s the thing: sometimes this is hard for all of us. Sometimes I lie awake and I worry about the future. I wonder if there will ever be such a thing as a “normal” meal for F and I worry. He didn’t start to get teeth until he was over a year old – which was a good thing, because if he had gotten them earlier they would have been ruined by stomach acid -, but people don’t know that. They don’t know that he isn’t the same as his brother. They don’t know how hard some days are for him, and that’s the point: this is hard for him.
Yes, the stares and the whispers are horrible for me. But it’s not myself I feel the hurt and the anger for; I feel it for him. I feel it because I wish that he didn’t have the legacy of this condition to deal with. I feel it because I want to protect him from that judgement. And I feel it because I love my children more than anything on this Earth and I don’t want them to find out how cruel people can be just yet.
The truth is that I don’t really know whether or not these things are permanent, and I wish that there was something I could do to fix it. But I think this is just what we’ve been left with, and it’s okay really. It feels like a long time since I would stagger out of bed at 1AM, 2AM, 3:30AM and so on just to sit in the dark beside his cot and whisper that it would be okay while he struggled to sleep and grizzled through the discomfort.
I know that we’ve come a long way and that F will continue to get better, and I know that we will keep finding our way as we go.
That’s just what we do.