I can’t sleep. Again.

i’m tired and go to bed at a reasonable time, but then all the worries and possibilites start churning endlessly in my head, going round and round until i become dizzy with them. It could be the milder form. He’s progressing at the moment. but…

And there’s the problem. In my head I already know that the likelihood of reprieve is slim. My lovely vital engaging little boy might die before he’s 10. Or if he doesn’t there could be other devastating physical problems. I can forsee a lifetime of hospital trips, hope for new treatments, being dominated by this condition.

I already feel bad for Twiglet, that we can’t always do things that he would enjoy. How much more so will that be the case in the future? How can I stop myself snapping at him when I’m eaten up with worry about his brother?

In a way I know this is my grieving period. Accepting and embracing the worst that could happen, so when we get the actual diagnosis, it may come as a relief, a release from that worst case scenario. So I’m waiting and waiting again.

For the last year and a half it feels like I’ve been stuck in a strange sort of limbo – knowing that something isn’t right with him, and not being able to get that seen by any health professional. But of course then it was just a matter of ‘being a bit backward’ and ‘perhaps it’s something that will improve as he gets older’. Now, I’m still stuck in the not-knowing, but the thing we don’t know is much worse.

Real life feels strangely unreal. I can be going to fetch a bottle of milk from the fridge, enjoying the warmth of a summer morning meaning that I don’t have to shiver on the way to the shed, hearing the birds chatter gently to each other and wondering what the weather will be like. And suddenly the remembering thumps into me.

Part of me wants to shout from the rooftops what I’m feeling at the moment, display this rawness to the world, invite people’s sympathy. But circumspect behaviour kicks in. Why tell people when I don’t have the answers to any questions at the moment? Why open the floodgates in public when I may never stop crying? Why mess up their lives with noisy uncomfortable emotions? So I carry on normal conversations, laugh and enjoy sports day like all the other parents.

This is the very definition of isolation.

Thank the universe for my sister and good friends who I can talk to. Hubby knows now too, and I think it’s hitting him harder – I’ve had longer to process the possibilities.

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