The day went past without me even realising, yesterday has been 6 weeks since Grayson’s emergency surgery. In some ways it feels like a life time ago, in others it still doesn’t even feel like it really happened.
He is doing amazingly, no lies, the doctors said he came back from it better than even a healthy, normal child would, it looks like there is no lasting damage, other than the fact he is not really sleeping but that path had already started.
It is crazy to think 6 weeks ago my son had hours to live at best, to think they thought he wouldn’t come out of surgery, that we should have lost him, but today as I fed him breakfast he excitdely shouted at Mickey Mouse like nothing had happened and the only reminder to many is a very awesome scar on the side of his head which in fact is nearly completely healed.
For me though it has started a downward spiral, I am struggling, I am terrified to let him out of Ashley or my sight, I want him wrapped in cotton wool.
To be honest I have always been like that to a certain extent, I have always struggled to let him go, but I was doing so well, I was letting him live life, letting him be as normal as he could be, I knew Ashley was right when he would say to me “Let him be like any other child” but he isn’t, what happened is proof of that. It is looking more and more likely he is having a new type of seizure which is causing the falls, we are awaiting so many results to find out, but as everyone that has seen him medically this month has said “He just is an unique little boy”, I do tire so of hearing that, especailly when they are using it in the terms of saving my little boy, keeping him from harm, healthy and happy.
Not only has it affected how I want to parent him but it has affected me, I was on a start of a new journey before his fall, I was starting to find ways to love life again, to look to the good and work through the bad. But now I feel lost, I feel so alone and am struggling to understand why our life has to be this way. Why we can not afford to support our children, why my eldest son has to endure such pain, why my other children talk constantly of ambulances and hospital appointments.
I don’t want to be doom and gloom, I want to try and be happy, I have always fought hard to never show any upset online but now I feel like it is all I ever show.
I need to find a path that makes us happy, we need to embrace life, travel, make memories, stop hating our everyday, stop panicking at every letter that falls through the letterbox.
Any tips, any ideas ? I know there are no magic money trees, or buttons to make Grayson normal, I am looking for realistic help.