I have a heavy heart as I say that the wee man has now been taken due to this dreadful, horrendous diagnosis. He passed in his sleep, mercifully, a couple of weeks after SMA took his facial muscles and therefore his gorgeous smile from his face.
The feelings of inability, uselessness, ineptitude and nothingness came rushing back. No family should have to deal with this bollocks. And twice??
Hesitation has hit me as I write this, as to whether it is something that I should share. If it is something that should be hidden away and I should not mention it for fear of making others uncomfortable. The death of a child is not a conversation starter, this I have learned.
Fact is, this is an uncomfortable topic. I know that. I've lived that. I don't want to push this on someone for whom this is a no-go station. Via the internet, you can click this topic away. So I will go on and give myself a bit of a release that I needed before and now need again. If I see you in real life and this has made you a bit uneasy, pretend you haven't seen it to make things easier on you and me both. Lets talk about the weather instead. Hum de ho.
My brother is my piece of goodness. He made my youth worthwhile. I helped him and he helped me. Going into why is another story altogether. Just know that I adore him and will do anything for him. To not be able to help him now, is unbearable. He is an amazing man, with strength, goodness, pride. If anyone deserved something less, I would like to meet them. My brother has dedicated his life to making people laugh. And he ends up with this shit.
Life is sometimes a bag of fucking arseholes with no rhyme or reason.
