There are no words

Well after nearly four days at home William is back in hospital. He'd been doing really well and had no fits at all yesterday but his cough got worse overnight and he's been more snotty today. That wasn't of much consequence but then today he suddenly had a fit about 3pm. It wasn't a big one but it was the type that make him de-sat. About half an hour later in the garden centre car park he had another one and went very grey in his face. We tentatively drove home but after having several more fits within the next hour we had to call the hospital who asked us to go in. Once we arrived they calmed down but he's had a couple more again this evening and has been de-satting quite badly with them and needing some oxygen. They've given him another loading dose of phenobarbitol tonight. His consultant should be in tomorrow so we'll see what she says and decide where to go from there.

I don't know what else to say. I am well and truly fed up. As wonderful and welcoming and light hearted as the lovely Holly Ward nurses are the fact remains that we have nothing that even comes close to resembling a life. Steve is trying hard to get to work as much as he can because we don't want to take the mick which leaves us with very little time together. I feel like we're in a catch 22 situation. Life with William is awful a lot of the time and life without him would be awful. I can't understand why this is happening. It's one thing to have a child like William and to cope with all that involves but we never expected we would be in and out of hospital this much. We spend our lives packing and unpacking hopsital bags, trying to figure out where we're going to get our next meal, barely seeing each other, getting awful sleep apart, not being able to make any plans, cancelling any plans we do make. We never thought it would be like this and it's a completely crappy existence. Once again life feels completely unsustainable and I feel completely abandoned by a God who makes no sense to me at the moment.