Blogging!

The great thing about a blog is that you can just blog. It's your own so in theory you can say whatever you like. It's often quite cathartic and helps get things off your chest.

We have had a wonderful Christmas and New Year, enjoying two weeks abroad in the sun - including Muir. Right now, as I type he is sitting on the sand beside his moat full of water whilst his younger brother runs in and out of the sea with buckets full of water to replenish the slow seep. Its all wet sand and sand pats just like it should be - idyllic on the surface but in reality hard work.

We don't do this without help. In fact we couldn't be here without help and the help we get is outstanding. Increasingly I am aware of the long term problems we face with Muir. He will be 15 years old on 14th January. How did that happen? Muir is a young man now. Yes, he still plays at the stage and age of a toddler but he is physically 15 years old with all the emotions and strengths that go with that. It's tough for him and it's tough for us too.

I would be lying if I didn't say that sometimes I wish it were different. In fact, with all my heart and soul I wish it were different. I really do and perhaps now more so than ever. We try and include Muir in as much as we are doing as possible but he always presents us with limitations. The fireworks on Hogmanay were amazing. The smile on his face was bigger than that of the Cheshire Cat but he couldn't be with us at the party and we would not have missed that moment being with him enjoying the fireworks at midnight for all the world.

It's difficult not to be sentimental at times like these and all too frequently I find my mind wanders back to that awful question "why?"
  
Maternal stress during the very early stages of pregnancy is something that is now being investigated as a cause of the mutating genes associated with severe childhood epilepsies. Our own Muir Maxwell Consultant at Edinburgh University is studying this amongst other things. For me, there is no doubt that maternal stress during pregnancy could be a cause of Muir's epilepsy. I have never in my life experienced the stress that unfortunately coincided with Muir's conception, a hideous level of stress that prevailed for the first six months of my pregnancy with Muir. I am certain his life has been altered permanently and utterly detrimentally as a consequence.  

My stress was not of my own making. There was someone behind it but I don't know if having someone to blame actually helps matters. In my case it cost a child his life! How do you ever come to terms with that?!

Yours,

Muir's Mum.