The train home

It's the worst part of the week. All of the screaming, the kicking and the anguish; every hard-fought calorie; and every single moment of torment of the week comes down to this. Leaving St Pancras, with Ollie, going home again, and I'm sitting on the train crying. This is the moment when we have the longest wait to the next tiny little bit of respite, next Tuesday, for the same again. 

So we've spent another day at GOSH, and although we're assured that everything possible is being done to secure a specialist unit place for Ollie, we are still on our way home again. We don't know when we will get the call. It will be, apparently, "soon". 

"Soon" doesn't get me through the hours of horror. "Soon" could be a few days, or it could be weeks. Someone else's "soon" is very different from my "soon". Being asked today about our goals for the next 6-8 weeks was not reassuring. In 6-8 weeks, my only goal is to not be sitting on a train next to my son, who is in the foetal position whilst demons bellow in his head. 

I am utterly exhausted, yet incredibly angry. I feel rage when I look around at the carriage full of people going about their day. I am angry that they can just eat and drink when they want. That they go to work and have hobbies and relationships and they don't spend their days watching their baby be overwhelmed by a critical illness. They can go home at watch tv and go out and no one is screaming in their kitchens. They can sleep at night without listening out for sounds of escape. They can just be normal. 

In my weakest moments I feel huge self-pity. I've been mentally ill for years, as has my dad (and uncle, and grandmother). So it's clearly my fault that my son is now being ravaged by unseen monsters. It's all down to me. I couldn't even manage to grow a foetus right. I fucked it up. I broke the child. 

In my slightly more robust moments, I try to focus on the future. At the moment I can't see very far ahead. The markers that we'd put down for the year - Paris and London marathons, a huge rail trip across Europe, Ollie starting a new school - are all gone from the horizon. Everything has been cancelled or put on hold; parked. There's nothing but days of trying to eat, of trying to not die.