There’s not really much I feel I should add to this post, other than explain that Neil had been pushing at me to join in the blog. I still can’t read this one without tears, perhaps because I know I was finally giving in to writing it as a result of being angry at Neil for ‘sugaring the pill’ with the joviality of previous posts and when I read this back I'm hearing myself cry for help. – Louise (2013)
Hi, I'm Louise, this is my first post for The Plattitude… as you can imagine, after Neil and Oscar, there's not much of my time left to sit down and write!
As Neil is explaining all the physical effects of MND, I thought I would concentrate on the emotional side. Rather than catching you up to this point, I want to share one of my strongest 'outpours' that happened one morning. Unfortunately, I couldn't think of a better place to send my ‘outpour’ than the Jeremy Vine show on Radio 2, where it was thereupon ignored. I promise to think of a better forum next time! Please read on…
"I am up and playing with my baby, we’re playing with stacking cups and watching the breakfast news while letting his daddy have another half hour in bed to sleep. Amongst the frivolous and the awful, there’s an MP explaining how he thinks the creation of hybrid embryos to help cure diseases is quite ethically and morally wrong. I wonder if he’s ever had to let his partner get an extra half hour sleep because her body is giving up. I wonder if he could take my place for a day. I'm hoping that today isn't like yesterday when I was trying to give my baby the encouragement he needs to crawl and looking my husband in the eye as he admits that yet another part of his body is lost and he can no longer hold a pen to write. I wonder if he could explain to my son for me that his daddy loves him very much but can no longer hold him. Or perhaps he’d rather take my husbands place and watch his son cry and not be able to pick him up and cuddle him.
Please tell this MP, that I don’t care about any of the facts that he didn't bother to mention during his air time, I'm not a scientist or a politician, I'm just a new mum who only had 4 months of joy before her husband was diagnosed with Motor Neurone Disease and I'm trying to muddle my way through motherhood knowing that I'm going to be doing it alone. Please tell him that I know there’s nothing that can save or even treat my husband, but there might be something that can save my son… if that’s OK with him.
Please tell him that if it's so important to him to get his name in the public arena, to comment on something that affects his own family, not mine."
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