Hello beautiful people. How are you all? We've been having fun here, bad fun not good fun.

 

I don't know how I'm going to keep on doing this. I know that I have to but I don't know how I'm going to manage it.

Chai's Symptoms are getting more severe as he nears puberty and I'm finding it really, really difficult to cope. I am only just coping now, in fact I'm not sure that's correct. I'm only just holding on now is more accurate. I'm not sure how I'm going to get through when his symptoms are worse. And how I'm going to get through years of those symptoms being severe. 

 

Yesterday he lost his words. He knew what he wanted to say but couldn't get it out. Even when I told him the words he was looking for he couldn't say them. I'm so scared about what the future holds for him. Am I going to see my baby slowly regress and lose his ability to talk? My little boy who hasn't stopped talking from the moment he found his voice? Is that how it will look for him or was yesterday just a glitch? What do I do? Who do I ask for help?

I so wish that there was some help available. As much as I hate Medication, if that would help him I'd do it, but everything we've tried has had the opposite affect so his paed now will not prescribe any more medication. It's not worth it because some of them caused his symptoms to escalate and they stayed that way. Medication is supposed to make him better not worse. Definitely not permanently worse!

And what about us? There's all this information saying carers need to care for themselves, but that really just puts the burden back on the person who's already overloaded and struggling. How exactly am I supposed to look after myself when all my time is consumed with working, housework, arranging and taking Chai to his therapies, emailing or meeting with his school and all the other things that come with having a child with additional needs. 

I haven't been to the gym for over a year now. Maybe that's what I should focus on. That's achievable. I'll aim to get to the gym twice a week. I used to go three times a week when I wasn't working, but now I'm working twice a week is more realistic. 

That's what I'll try. Small steps. Slowly add in small things. One thing at a time until there is more happy in my life. 

As for Chai, I have no idea what I'll do. I will just have to wait and see how things turn out.