About

I have 4 children and 3 of them have Something Wrong With Them. Yes, I know, we all have something wrong with us, but for them it’s official. Caitlin is 20 and has just had her own child so probably cannot be classed as a child any longer. She has Ehlers-Danlos Syndrome (type III), and it is very severe. She uses a wheelchair. James is 16 and has the same condition but less severely (he is sick of people saying that because it feels pretty severe to him). He is also probably On The Spectrum. Leo is autistic. People ask me if it is severe or mild. I don’t even know what that means. I am not being difficult, I genuinely don’t know. Leo also has microdeletion16p11.2 (group 1). This could mean a whole new set of challenges for him. Or it could make no difference whatsoever. Miles is still a baby and we do not know what he will bring to the party. I also have an amazing partner. He is The Sensible One – one of us has to be, and it is never going to be me. I am learning a lot of stuff, forgetting a lot of stuff, and I have a lot of stuff swishing about in my head (I was going to say swirling but it is less energetic than that), so I thought blogging would be a good way to dump some of it somewhere. The idea is that I can then get on with other things, because believe me there is a lot to do and barely any of it gets done at the moment.

I don’t think anyone will ever read any of this apart from me, so my posts will be long, rambling and are virtually in their first draft form. I really don’t have time for anything more without seriously negecting my children. I will however, post once a week at least. It will be on whatever topic is foremost in my mind at the time. At the moment autism is the hot topic, but no doubt EDS will rear its head from time to time. Hey, I’m feeling better already!

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