There are times when it’s hard to see the bigger picture. I know I should be grateful for many things – for Woody’s incredible recovery so far, for our excellent NHS, for the wonderful support from our friends and family.

I AM grateful for all these things but they don’t stop me finding myself in some pretty miserable slumps.

This weekend has been hard. We thought it would be a nice idea to go to the zoo yesterday. We’d kindly been given tickets from the play worker on the neurology ward to use when Woody was well enough. The sun was shining and it seemed like a good plan.

Very very quickly, reality hit. Woody was unhappy and complaining throughout. He wouldn’t walk anywhere, he was whining and screaming. He showed no interest in the animals and only brightened up when he a) got a piece of chocolate and b) saw a digger.

I know I should chalk this one up to one of those shit parenting experiences – one that we’ll shrug and laugh about in days to come. But it was a lot more than that.

I looked around at all the other families at the zoo and became acutely aware of how difficult life is for Woody – and why it is that he is constantly frustrated and moaning. (Incidentally, he is a lot less like this when he’s not with Stewart or I).

Woody’s brain has been impeded from developing since day one. Yes, of course it has developed but slowly and with a lot more effort from him and from us. Right from the newborn days, he was the unsettled baby at baby group, the one who wouldn’t do the activity in sensory class, the one who wouldn’t sit still for a story at Book Bug. He was very rarely content if required to focus and now I have a better understanding as to why that was. Even when small, he was frustrated and age-appropriate activities were not appropriate for him.

Especially after this recent illness, he can’t do even the simplest of tasks with his hands or communicate his needs. And he doesn’t understand why that is.

I feel a very confusing mix of annoyance, exasperation, sympathy and guilt when we have hard days. I get so fed up of having to give up on promising days out (we only lasted about two hours at the zoo, and Woody was unhappy for most of that). I want us to spend time doing fun things as a family without all the battles and the stress. What they call “making memories”.

Yesterday really got to me. Most three year olds would be thrilled to go to the zoo, have some yummy lunch and run around looking for animals. Our experience was nothing like this and I’m not sure it ever will be. Woody’s attention span is virtually zero and combined with all the things he can’t do independently, we just can’t expect him to appreciate experiences like other kids his age.

It makes me feel sad for what he’s missing out on, and what we’re all missing. I think sometimes Stewart and I will have to split up and take Bobbie somewhere and Woody somewhere else. Not exactly family together time.

We have no idea if or when Woody will move beyond this period of frustration and it’s breaking my heart to imagine that he may not get to experience things that his peers do. Why should he miss out? Why should we?

But yesterday proved to me that if we just push him, he will push back and that ends with everyone in tears.

I’m not looking for picture perfection. But I long for a bit more light and joy pushing through the shadows. That still feels like a long way away.