I am fucking sad today, overwhelmed, angry, pissed off and feel lonely …. I DON’T want Reed to have a special brain and sometimes I don’t want a child like Reed.
There I said it, and now i feel like the shittest person in the world, I will explain, cause that’s what I do best.
There is soooo much I love about him, but I feel like a massive failure to Reed, I want to understand him, support him, learn from him, but most of all I want a magic wand to make him normal, less extreme, better able to cope day to day, I want more time, space to spend with him.
I have three amazing children, a house, a good job, I have some of the most amazing friends, have family nearby, Ryan does all that he can for his children, a car that people would love, regular nights out and time “off”, which is amazing right?
But I have no husband anymore, I have lost friends, I have to pee in a bucket regularly, I have to spend all my time within reaching distance of my son who for no reason will flip the bench or sofa over or throw a chair or table or toy, who will scratch and hurt other children or adults for seemingly no reason, who I cannot take to the shop, to anywhere unknown, to anywhere he might be overwhelmed, cafe or even on a family holiday. And I cannot help thinking that this wouldn’t all be true if I Reed didn’t have a special brain.
It’s relentless, it’s lonely, it’s hard work and there doesn’t appear to be a light at the end of a increasingly long tunnel.
If only he were normal or just a little less extreme, we including His siblings would be able to do normal things together.
Never thought I would want to be normal, but this is my aspiration!
But it’s not his fault, Epilepsy and brain injury and any underlying issues are to blame and society.
Stupid society, I am not an entitled person, but I really thought that social services, medical professionals would be able to for warn parents like us. Give us the support and training we need.
You wouldn’t become a arctic explorer without training and so why is it that we get none, unless we fight fight fight, I am loosing my fight.
Each day we get through I celebrate and will of course remain optimistic of a bright future but for today I am angry, sad and lonely in equal measure.
Thank you, wasn’t meant to be a sympathy stunt, I just needed to get it out!
The love I have for him is so strong, just the pressure so intense and the future so unknown.