How to Exist

How to Exist: 

Get up, even though you’re not entirely sure if you’ve been asleep. Actually, you must have slept as those nightmares that leave you screaming and sweaty require sleep.

And then just be. Keep busy. Shut it down. Focus on the present.

I’m not hysterical. In fact it’s unfunny how unmoved I may currently appear.

But I’ve made myself a promise: I won’t force emotion. I will just go for a ride on whatever appears. And so far that is the cart with three wheels but painted beige: wonky and meh.

It appears that even though there is an inevitability to the decision we’ve come to, there is no predictability.

It could be sudden. Imagine that? I have. Finding him in his bed, the phonecall from school. Yes, school, because he loves it, and the veritable King like status he now holds means he gets all the things he loves. Then odd thoughts: out in the park, a cafe, in the car. Having to try and explain that no, no, don’t call an ambulance.

It could be slow. Imagine that? We have medicines for nausea, spasms, seizures, increased secretions.


So we wait and watch. Hold him tight but let him be free to enjoy every day as he wants.

But here’s what helps us exist, RD is unsurprisingly surprising everyone. Bar the increasing weariness and muscle fatigue, his itching is under control. He’s still engaging, giggling, pulling at my hair. I can see that he’s getting paler, his eyes puffier and darker, but his mind still races with the million impulses to find all the toys and press all the buttons.

Also, the kindness of others. Visits, messages, post. Thankyou.

Grief is stilted. Part of me still waits for this all to be A Mistake. The wrong NHS number, an inaccurate measurement of blood toxins. So I guess denial plays a strong hand too.

The cart is on a slow trundle to a cliff edge in the fog.

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4 thoughts on “How to Exist

  1. I don’t think I have ever something as powerful and moving as your words. I don’t know what else to say but that this will stay with me for a very long time.
    Peace to you.

  2. My heart breaks for you all. As a mum you will find the strength but this is a journey no mum should ever have to be on 😢. My love to you.xx

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