When Will was in ICU the social worker, or psychologist or nurse… or whoever was comforting me at the time (there were many people trying to hold me up) suggested that I write a diary each day and that way I can see the wins in a situation that seems unwinable (they weren’t her words but I think I’ve said it more succinctly!). Writing is cathartic for me, so I’ve found - but I don’t have the capacity to write things twice. I haven’t worked out how I find the time to write on Will’s Update Page and write this “diary” that is supposed to highlight that despite how crappy everything looks… that perhaps today is not as crappy as it was 3 weeks ago.
As I have previously expressed, my greatest fear for Will is that people will not hang around and wait for him. That people will leave him behind, move on to others more able, more cool, more fun. It is this fear that drives me to keep people connected to Will’s story so that when he comes home - whenever that maybe - that people don’t see him as someone to pity, but through following his and our family’s story he is someone that they look at with admiration. And it is this admiration that I am hoping will spur Will on to get up each day and live it to its fullest no matter what his body is or isn't capable of doing. So, considering this - I’ve choose this page as the “one” I want to write on and hopefully through this page I can start to see a story that upon reflection is getting brighter bit by bit.
Well… no bloody brightness today - how’s that for cathartic! I’m not sure how you’re supposed to feel when you see your once fit, strapping and strong son be lifted into a wheelchair for the first time (first time for me - not for him). A spinal cord injury patient doesn’t get lifted into a chair and off they go (this, I think, is how I thought it went). No - a spinal cord injury patient can’t control their blood pressure and for Will feels very unwell when moved to the point of being physically ill. He is scared of falling out of the chair because he has no centre of gravity anymore and can’t feel the chair supporting him. He is weak and has lost significant weight and can only last 15min in the chair. This 15 min wipes him out physically and emotionally for the good part of the day.
Am I supposed to feel good, I wonder, that he’s over his infection and is now able to get out of bed? Or am I supposed to feel shattered at the reality of the situation… because, quite frankly, I feel shattered. I just want to give him a leave pass for a week… or a day… or 5 min. Just jump up Will - stretch your legs, go for a quick sprint down the corridor and then jump back in the chair… or even better, keep on running and I’ll take your place. (Oh gosh - this was supposed to feel cathartic and writing this feels bloody awful).
I left Will at lunchtime today - flat, exhausted and very somber… I carried these feelings for him through the rest of my day. Isn’t that what parents do? All the mindfulness, all the deep breathing and all the crying to my mum couldn’t shift these feelings.
I then got a text at 5pm from Will’s coach, teacher, mentor and friend saying what a great half hour phone call he’d had with Will. He was “on fire” - positive, happy, inquisitive.
So there you have it… Will, my 14 year old, self-absorbed, teenage son, had manage to shake these feelings and look to the new moment. Meanwhile his wise, “mindfulness teaching mother” was walking with her knuckles scrapping along the ground because of the weight on her shoulders.
Thanks Will - for leading me again and teaching me how to move through the many emotions of spinal cord injury. Much love and admiration to you buddy. xx