We decided that the boys would pick me up from work and we’d take the dog to the groomers, then go out for lunch while we waited for him to be beautified (aka de-fluffed!).
We ended up in Pizza Hut, a place Sam enjoys because he loves the music they play and the atmosphere.
However, it always brings a little moment of awkwardness when we’re asked would we like a children's menu, or when ordering what the little man would like.
Sam is PEG fed, completely nil by mouth (although he is allowed the odd taste now and again), but the servers aren’t to know that!
We always explain the situation and that he has his feed with him – we try to time going out for food with Sam's feed times, so we’re not sitting eating in front of him while he waits for his.
Still, it makes me sad on a level that is positively visceral; I’d love my little boy to be able to join in and snaffle pizza like his fellow 5 year olds rather than be fed through a tube directly into his stomach.
His complex disabilities also make it difficult to try and engage him with anything – although now we will always ask for a childrens pack if they are available, and between the two of us we take it in turns to play with Sam and encourage him to do some colouring or to play a game.
It is exhausting.
You don’t get the same level of feedback that you do with a cognitively normal 5 year old, and it saps your energy as you are intently watching for the tell-tale signs that he’s enjoying himself or that its time to move on to the next activity.
He can’t talk, although he does vocalise; he’s registered blind although he does have some vision.
We know he can hear perfectly well, but he can’t respond to our suggestions or questions as clearly as other children can.
And it is soul destroying at times.
And then… then you see HIM.
The little boy, not the disabilities, focusing intently on colouring in a character on his page while his adored Daddy supports his hand while allowing him to do it himself.
Its only a brief moment, before the seizure activity overrides things and he struggles again to keep his eyes focused. But its there.
Its these little, fleeting glimpses of who my little boy really is that make up for the rest of the crap he and we deal with daily.
It’s a sign that regardless of his issues, he is winning.