A Blog About a Bloke-Living with WHS

It most definitely has been a while. But as usual I am being slowly and gently guided into writing again. I will most likely not publish or open the blog just yet. In fact. I will probably not even continue here. I have started a new blog elsewhere. But I am not even sure if that is for me. All I can hope is that the gentle guidance grows stronger. Because I miss writing. I miss expressing myself creatively in that form. I don't care who reads it. But I do feel as though there is space for my voice to be heard again. And so. It shall be.

On the hard days, I wake at 5am. For a few moments, or, what feels like hours, there is a rush of anxious adrenalin racing through my body. It's as though I am running a marathon. I don't fight it. I lay there, allowing it to make its way through my body then find its way out again. It is a tiring way to start the day. Thankfully, these days happen infrequently and I can easily identify that I am stressed and that I need to take a break and clear my mind. Usually, I just remind myself not to catastrophize anything and get on with it. But ugh. It can be so annoying. Lately, I have been getting these flashes of inspiration in my mind. Almost like a gentle whisper in my ear. Encouraging me to write. Write a book. Go on. You can do it. So as a way to start, I am writing in my long forgotten and (currently) unpublished blog. There is an awful lot I need to write about. This journey of mine hasn't finished yet. I have been terribly emotionaly lately. Small things have h...

Where is the handbook that discusses how to help your nearly teenage son deal with his changing body? Yeah Yeah . I can hear people yelling out the names of them to me. Well, thanks, they will be useful in another 4 or so years when my typically developing child is going through puberty. Right now though, I am faced with kind of a big challenge. You see, my son is nearly 13 and starting to change. Probably a little bit later than what the typical kids do these days. But still within the 'normal' range. I have noticed physical changes (bit confronting the first few times), but I have also noticed the HUGE changes in his emotions. Gone is my gentle, sweet charming little boy. Replacing him is a young man who is confused, angry and sad. I guess seeing as you are reading this blog, you probably realise that the son I am talking about is my one who has a disability. If you are new here, he has Wolf-Hirschhorn Syndrome, or as it is sometimes known, 4p- Syndrome. This mea...