It’s been a while since I posted and I don’t really know where to start. Everything has felt like a whirlwind with very little time to breathe.

Woody is continuing to progress at home – I still see tiny improvements every day which is good. He even managed to take a little drink out of a cup (a Scotrail cup, which added some brand incentive!). “That’s what the train drivers drink their juice out of!”

But the levels of frustration from Woody are really tough. He whines and screams so much and as much as it’s highly irritating, it also makes me feel really sorry for him. He can’t understand why he can’t do what he could before. All we can do is continue to encourage him.

The transition from hospital to home has been pretty appalling. There has been minimal communication between all the staff and specialisms involved and we’ve had to navigate much of what we need for ourselves. It seems that a lot of the key players involved in this transition were on annual leave when Woody was discharged but it’s baffling to me how there is no-one else to pick this work up. Seriously – never get discharged from hospital in August.

Slowly, we’re starting to piece things together and Woody will get therapy sessions at home. We’ve also organised some childcare at home for him so I can get a bit of a break and Stewart can get on with his work. The thing is, we’re paying for this care because no-one is able to advise us about what we should be entitled to. What happens to families who can’t pay for this care? It feels like we’re the first people in this position (which is clearly not the case) and it’s all a bit confusing and very frustrating.

On the bright side, we were able to celebrate Robin’s 1st birthday together as a family. I was determined not to lose out on yet another important family moment and it was a lovely day.

The sibling bond between Woody and Robin is growing and that is gorgeous to watch. Woody can be a bit heavy handed because his coordination is currently compromised but we can see him trying to be gentle and affectionate (much more gentle than he is with me or Stewart) and Robin simply adores him. I can’t wait to see that relationship continue to blossom.

And other things have been going on. Very sad things, very significant things – nothing I can go into just now. The waters continue to be very rocky but I feel like I can just about see dry land in the distance – which might just offer some calm, quiet, uneventful time for me and my family. Somewhere we can just lie in the sun. We long for it, for some old fashioned simple times, the chance to appreciate the small things. I know it is coming.