It is rare these days that I feel as I am right now. But yesterday there was one more thing told to me that made me accept the reality of what is happening with my boy and I caved. And I used the bottle to self anaesthetise and I sobbed like a child who had something precious taken away from her.
And that is rare these days because after so long I had finally found a kind of inner peace. But yesterday that seemed tenuous.
I don’t like to write or talk about this fucking disease that has my eldest son firmly in its grip. If I don’t talk about it it doesn’t exist. I had to talk about it yesterday as it was one of the rare times that my ex husband and I speak now and it was firstly me pointing out to him something I had found about new groundbreaking research about a thing called ‘gene silencing’. I am always alert and reading trying to find some magical cure. But as I thought, my ex husband was already aware of it and told me it wasn’t going to work for our son, but there may be something else; he mentioned this DNA repair mechanism thing which was long winded and ridiculously titled and although I try to never entertain finality, for a window of time yesterday I did.
And I had never felt so alone and so out of control of things. There was nothing I could do to stop this and it was the worst feeling in the world.
I know that all around shit is happening to others, that I am not the only one. We had bad fires in this state over the last few days and people have lost their homes and livelihoods and that is horrendous. There are people displaced from their countries trying to find a place to call home and being turned away. There are any number of things happening.
But my reality is all I can or can’t handle right now, it may sound selfish but it is true.
I don’t know what to do and I am trying hard to stay upright and it ain’t easy AT ALL. Aside from my financial, job and living stresses and other crap (which is actually nothing compared to my boys’ illness), my ex told me that my son is now losing his voice which indicates that currently the deterioration is currently in his throat and it may close up and he will choke to death and that has always been my worst fear. This hideous thing has made it hard for him to talk, chew and swallow food. His limbs are starting to cripple from dystonia and it has become painful for him so they have him dosed up on heavy duty pain killers. This insidious fucking thing is slowly taking away his ability to live and I can’t do a fucking thing about it. At times I feel I am dying inside from this torturous knot I can not undo.
I rang my youngest son yesterday to make sure he was OK because he is living with it first hand (he lives with his father now and so does his brother. His father is very good provider, he can afford things I just can’t, and very dedicated to our boys and for that I am so grateful). I told him how proud I am of him and how he holds himself in these trying times, that he was on the front line and he said to me ‘I’m not on the front line mum, Jordy is’. He was so right and he is amazing. The positive out of all this is that I have been blessed with 2 of the most amazing human beings that ever existed…my beautiful sons…my angels.
As I wrote the above in partial tears and with a large lump in my throat a wonderful feeling came over me. The realisation that I can now also see the beautiful side of things. After many months of working through my fucked up mind and working hard to gain some semblance of strength and resilience it just occurred to me that I now automatically see the upside of the situation.
That for whatever time I have been and am blessed to have these beautiful humans in my life I am profoundly lucky and very grateful. They have always been my anchor to this earth and I need to firmly anchor now, in this time…for both of them. Snap out of my self pity and just get on with it.
And I will.
I knew that writing this out like this would help pull me out of it, what I have been feeling….fuck the tsunami of crap…it won’t take me down without a fight..not this time…
Love and whitelight xx